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Community Forums => The Lounge => Topic started by: tikay on December 24, 2007, 03:35:03 PM



Title: Reece goes away for Christmas. Again.
Post by: tikay on December 24, 2007, 03:35:03 PM

Sad to hear this morning that Reece has had to go into Hossie again. So, that's another Christmas at home missed, for him, & for Mum Stacey, Grandma Maureen & Grandpa Darren. They will now visit him & give him his pressies at 6am on Christmas Day. A young kiddie opening his Pressies on Christmas Day must be the highlight for a family, so this is a bit of a blow, especially now he's old enough (3, I think) to appreciate Christmas.

He has another "line infection", & he'll be OK, apart from missing Crimbo.

But it's worse than that. On the 27th, he was due to go into Hossie for evaluation for his forthcoming & much needed "big op". That will now have to be cancelled. That is really bad news, he needs that Op - he just has to have it.

Our thoughts are always with Reece, Stacey, Maureen & Darren, but especially so right now.

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Colchester Kev on December 24, 2007, 03:37:15 PM
xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: Graham C on December 24, 2007, 03:38:23 PM
Best wishes, hope everything goes well for you and our thoughts are with you all.


Title: Re: Reece goes away for Christmas. Again.
Post by: TightEnd on December 24, 2007, 03:40:22 PM
Puts things into perspective at this time of year

best wishes x


Title: Re: Reece goes away for Christmas. Again.
Post by: kinboshi on December 24, 2007, 04:14:35 PM
Best of luck to Reece and the rest of the family over xmas and in 2008.

;goodluck;


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on December 24, 2007, 04:31:40 PM
best of luck and best wishes ;goodluck;


Title: Re: Reece goes away for Christmas. Again.
Post by: Wardonkey on December 24, 2007, 04:31:57 PM
Best wishes. x


Title: Re: Reece goes away for Christmas. Again.
Post by: charmaine on December 24, 2007, 04:34:19 PM
I'm sure Reece will have a wonderful Christmas where ever he spends it , as he has a wonderful caring family to share it with .

Best wishes to all of you .

Charmaine

xxxx


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on December 24, 2007, 04:46:41 PM
What a blow. I know everyone was psyched up for the 27th.

Chin up, we're thinking of you.


Title: Re: Reece goes away for Christmas. Again.
Post by: Shogun112 on December 24, 2007, 04:47:45 PM
I am not sure who Reece is, but, I can certainly sympathise and wish the best of everything with his hospital visit..  Good luck and take care..


Title: Re: Reece goes away for Christmas. Again.
Post by: bobby1 on December 24, 2007, 05:14:05 PM
I was so hopeful that the 27th would bring some good news for Reece and his family, all the best to them all. xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Geo the Sarge on December 24, 2007, 05:40:37 PM
I'm sure Reece will have a wonderful Christmas where ever he spends it , as he has a wonderful caring family to share it with .

Best wishes to all of you .

Charmaine

xxxx

Spot on as usual kind lady.

Best wishes

Geo


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on December 24, 2007, 05:55:03 PM
I am not sure who Reece is, but, I can certainly sympathise and wish the best of everything with his hospital visit..  Good luck and take care..

Reece is the Grandson of "The Nun", (Maureen), & Stacey is his Mum. He's about 3, & is not a well lad, but he's a fighter, & he keeps beating the odds. There was a fund-raising Event for him in 2005, & the blondes raised over £8,000 for his Mum, to help her cope, & look after the lad properly.

He's been in Hospital - I exaggarate not - probably more than a hundred times, over half his life, but he's bonny & bouncy & very advanced for his age, & when he's home, he's as happy as larry. I think he must have had at least 30 "Ops" already, but he was due to have his "big one" very soon, & this infection will postpone that.

He'll be just fine, I'm sure.


Title: Re: Reece goes away for Christmas. Again.
Post by: taximan007 on December 24, 2007, 05:59:08 PM
The News I didn't want to hear. Was so hoping Reece would get get a clear run till the 27th.

Here in the Philippines we celebrate Christmas with a get together and a meal at midnight on Christmas eve. It's now 2am here Christmas Day and I am just home, Now in tears having read this.

The best of Christmas wishes to you Reece and your Family from

(http://limelight-882.static.dailymotion.com/dyn/preview/160x120/1801882.jpg)


Title: Re: Reece goes away for Christmas. Again.
Post by: Tractor on December 24, 2007, 08:35:15 PM
Best wishes.


Title: Re: Reece goes away for Christmas. Again.
Post by: redimp on December 24, 2007, 09:17:32 PM
Thinking of you all xx


Title: Re: Reece goes away for Christmas. Again.
Post by: bigalhx1 on December 24, 2007, 10:16:37 PM
best wishes


Title: Re: Reece goes away for Christmas. Again.
Post by: sofa----king on December 24, 2007, 10:18:37 PM
good luck little boy,you are strong,and have a fab family


Title: Re: Reece goes away for Christmas. Again.
Post by: mickyp on December 24, 2007, 10:32:02 PM
Thinking of you both, and the little man.xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: M3boy on December 24, 2007, 10:36:11 PM
Our best wishes to a special family at this time of year.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on December 24, 2007, 11:47:48 PM
Tx again for all the well wishes, but the good news is all is not lost yet, Reece's New surgeon believed Reece should be at home in the morning so has allowed us to bring him home on 2 antibiotics in hope that these are the correct ones to fight the infection he now has, both Stacey and myself are trained up to administer these. Normally they would keep him in hossy until the correct treatment is accertained, but  this new guy that Reece has in charge of him thinks it is only right he be at home on Christmas Day, also he still thinks the 27th is a possability depending on the next 36 hours, but if Reece spikes a temp again over night we have to return him straight away.  So after all todays ups n downs things may still go ahead.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on December 25, 2007, 12:52:21 AM
Tx again for all the well wishes, but the good news is all is not lost yet, Reece's New surgeon believed Reece should be at home in the morning so has allowed us to bring him home on 2 antibiotics in hope that these are the correct ones to fight the infection he now has, both Stacey and myself are trained up to administer these. Normally they would keep him in hossy until the correct treatment is accertained, but  this new guy that Reece has in charge of him thinks it is only right he be at home on Christmas Day, also he still thinks the 27th is a possability depending on the next 36 hours, but if Reece spikes a temp again over night we have to return him straight away.  So after all todays ups n downs things may still go ahead.

That'd be some Christmas Pressie!

Thanks Maureen. Take care of yourself, now. Reece & Stacey needs you, too.


Title: Re: Reece goes away for Christmas. Again.
Post by: steeley68 on December 25, 2007, 01:01:39 AM
Praying for you all.


Title: Re: Reece goes away for Christmas. Again.
Post by: Wardonkey on December 25, 2007, 01:12:56 AM
Fingers crossed for Reece.

Merry Christmas to all of you.


Title: Re: Reece goes away for Christmas. Again.
Post by: turny on December 25, 2007, 01:45:23 AM
good luck reece and best wishes that you get to enjoy xmas day the way a 3yo shoud xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Eck on December 25, 2007, 02:04:21 AM
Hope the wee guy has a wonderful christmas.

Best wishes

James & Debiie


Title: Re: Reece goes away for Christmas. Again.
Post by: suzanne on December 25, 2007, 02:26:19 AM
Hope you all have a lovely christmas Mo, especially the wee lad.

Fingers crossed for the 27th xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Bainn on December 25, 2007, 04:34:27 PM
Our thoughts are with you all, Harmony lit a candle at Mass for Reece and we will be sending positive thoughts.


Title: Re: Reece goes away for Christmas. Again.
Post by: taximan007 on December 25, 2007, 05:13:23 PM
Our thoughts are with you all, Harmony lit a candle at Mass for Reece and we will be sending positive thoughts.

 ;hattip;


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on December 25, 2007, 08:05:20 PM
Had a great day, he is not 100% energy wise but is now tucked up in bed after a wonderful immediate only family day.  Feel quite confident that he will now remain home until am on the 27th, we did have a close call last night but the temp did not go above what we were instructed to return to hossy with. Happy Christmas all, and thanks forall the posotive thoughts,  vibes and candles  which I am sure really help.


Take care all Maureen and family.xxxx


Title: Re: Reece goes away for Christmas. Again.
Post by: taximan007 on December 25, 2007, 08:15:01 PM
Great to read that Maureen:

Glad you were all able to enjoy the day you so richly deserve.


I think this is the news we were ALL hoping to read.


Title: Re: Reece goes away for Christmas. Again.
Post by: Bainn on December 25, 2007, 08:18:10 PM
Great to read that Maureen:

Glad you were all able to enjoy the day you so richly deserve.


I think this is the news we were ALL hoping to read.

Seconded.


Title: Re: Reece goes away for Christmas. Again.
Post by: bobby1 on December 25, 2007, 09:51:53 PM
Had a great day, he is not 100% energy wise but is now tucked up in bed after a wonderful immediate only family day.  Feel quite confident that he will now remain home until am on the 27th, we did have a close call last night but the temp did not go above what we were instructed to return to hossy with. Happy Christmas all, and thanks forall the posotive thoughts,  vibes and candles  which I am sure really help.


Take care all Maureen and family.xxxx

great news Maureen.


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on December 25, 2007, 10:19:18 PM
 :)up xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on December 26, 2007, 11:17:06 AM
Blimey, just catching up on the posts and my heart sank at the start of this thread, but was lifted by the end.  Delighted to hear he got to spend Christmas at home and will keep fingers crossed for an 'all clear' tomorrow.  You're an amazing family!  Hugs to Reece and all. 

xx 


Title: Re: Reece goes away for Christmas. Again.
Post by: charmaine on December 26, 2007, 11:31:33 AM
Gald you were able to spend Christmas at home , goodluck for the 27th .

Charmaine

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on December 26, 2007, 12:17:24 PM
Just a couple of pic's


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on December 26, 2007, 12:20:46 PM
.


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on December 26, 2007, 12:21:39 PM
Only just seen this thread.  So glad Reece was able to spend Christmas at home, and thanks for posting the pics.  Fingers crossed for tomorrow x


Title: Re: Reece goes away for Christmas. Again.
Post by: ericstoner on December 26, 2007, 05:19:59 PM
Glad he's up and rareing to go .Good luck for the op,he''ll be in good hands.

Brendan. x


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on December 27, 2007, 06:43:23 PM

Young Reece had the scheduled intrusive surgery today, & he's back home now. He's on morphine & has tubes & pipes coming from all over him. Mum & Nan & Grandad are, as you can imagine, a bit non-plussed by the sight of the little lad who was enjoying his Christmas 48 hours ago, but now with all this medical paraphanolia going off.

However, the fact that he's back at home must be an excellent sign.

More news later.

It's difficult to imagine what the family must be going through.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on December 27, 2007, 07:40:03 PM
No Tony. not back home, I meant back out of surgury, miss read his txt as well as his cards.(lol).xx

Reece is still out for the count after his surgury, on opening him up it was seen that the dilated part of the bowel that we were hoping was more dilated than it was is just not quite dilated enought to perform the Bianchi proceedure to lenghten the bowel, but the good news is that instead of the origianl 17cm he had this has grown to approx 45cm, which gives the surgeon a bit more to play with. Reece has now another large cut to his tummy and 2 more tubes coming out, these will be used over the next 4 - 6 months to stretch the dilated bit more, (this will not start 'till after monday when he has recouperated a little). Then after a few months he will then go to surgury again in hope that it has dilated more to then attempt to lenghten the bowel.

So he is now linked up to morphine and drips and drains , but still managed a quiet I  Love You Grandma, bless him, 


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on December 27, 2007, 07:50:40 PM
No Tony. not back home, I meant back out of surgury, miss read his txt as well as his cards.(lol).xx

Reece is still out for the count after his surgury, on opening him up it was seen that the dilated part of the bowel that we were hoping was more dilated than it was is just not quite dilated enought to perform the Bianchi proceedure to lenghten the bowel, but the good news is that instead of the origianl 17cm he had this has grown to approx 45cm, which gives the surgeon a bit more to play with. Reece has now another large cut to his tummy and 2 more tubes coming out, these will be used over the next 4 - 6 months to stretch the dilated bit more, (this will not start 'till after monday when he has recouperated a little). Then after a few months he will then go to surgury again in hope that it has dilated more to then attempt to lenghten the bowel.

So he is now linked up to morphine and drips and drains , but still managed a quiet I  Love You Grandma, bless him, 

Ahh, my apologies Maureen. As you say, another misread......

Anyway, thanks for the explanation.


Title: Re: Reece goes away for Christmas. Again.
Post by: bobby1 on December 28, 2007, 01:55:00 AM
No Tony. not back home, I meant back out of surgury, miss read his txt as well as his cards.(lol).xx

Reece is still out for the count after his surgury, on opening him up it was seen that the dilated part of the bowel that we were hoping was more dilated than it was is just not quite dilated enought to perform the Bianchi proceedure to lenghten the bowel, but the good news is that instead of the origianl 17cm he had this has grown to approx 45cm, which gives the surgeon a bit more to play with. Reece has now another large cut to his tummy and 2 more tubes coming out, these will be used over the next 4 - 6 months to stretch the dilated bit more, (this will not start 'till after monday when he has recouperated a little). Then after a few months he will then go to surgury again in hope that it has dilated more to then attempt to lenghten the bowel.

So he is now linked up to morphine and drips and drains , but still managed a quiet I  Love You Grandma, bless him, 

all the best Maureen.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on December 28, 2007, 03:07:52 PM
Quick update, only been awake for 10 Min's since the op so nothing really to tell apart from they are happy with him being like this. It was expected that he would sleep for quite a while which is best as at least he is not consciously experiencing the pain.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on December 28, 2007, 03:09:16 PM
He's such a little trooper!  Thanks for the updates and give him a wee hug from us.


Title: Re: Reece goes away for Christmas. Again.
Post by: charmaine on December 28, 2007, 07:22:12 PM
So glad all is going well for Reece Maureen  :)


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on December 28, 2007, 07:54:32 PM
Glad to hear he's doing well xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Dingdell on December 29, 2007, 10:25:00 AM
I was talking about Reece on Christmas day and saying what a trooper he was - we were all thinking of you - fingers crossed Maureen x x x


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on December 29, 2007, 03:06:29 PM

Maureen callled today. Reece has now "woken up", but he's not very happy with life. He won't sit up, or chat to anyone.

He's probably miffed that his Christmas has been interrupted!

I spoke to Maureen yesterday too, & she said that the quack - a modern thinking sort of guy - had suggested that Reece may be able to spend the day at home on New Yars Day, if no actual surgical treatment was needed that day, & he'd then return to Hossie the next day. Fingers crossed, it'd be nice for all of them if the whole family could spend New Years Day at home.

Big thanks to Maureen for keeping us all Updated.


Title: Re: Reece goes away for Christmas. Again.
Post by: Bainn on December 29, 2007, 03:08:44 PM
Good to hear the news, as always our thoughts go to you all.

Bainn & Harmony.


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on December 29, 2007, 03:17:17 PM
I spoke to Maureen yesterday too, she sounded exhausted.

It's incredible how much of a strain it is, coping with this sort of situation, day after day, month after month. I tried to remind her to look after her self in all of this, but I don't know if she will.

Mind you, grannies are tough old birds.....


Title: Re: Reece goes away for Christmas. Again.
Post by: bobby1 on December 29, 2007, 06:36:19 PM
I spoke to Maureen yesterday too, she sounded exhausted.

It's incredible how much of a strain it is, coping with this sort of situation, day after day, month after month. I tried to remind her to look after her self in all of this, but I don't know if she will.

Mind you, grannies are tough old birds.....

Especially Northern grannies, keep yourself well Maureen.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on December 29, 2007, 09:08:28 PM
Well the little big man is taking it all in his stride, he is finding it hard to talk to us and this is so out of character as he is such a little chatterer. At 7 pm over 2 days since the op we got him to sit up, that is the first time he has got off his lay down position, but his surgeon said that he is coming in tomorrow to take him for a walk. His surgeon must be the most nicest person within his medical environment that we have met since Reece was born, he really is so committed, he cant stay away from him. He makes us feel that there is someone out there that is willing to give him a good chance at survival and trust me that is one bloody great feeling. I cant begin to describe what we are all going through, because words really will not even touch it, but calling Tony to give updates and talking to Tom especially is really helping, I will never be able to repay the kindness these fellas show to us.


Title: Re: Reece goes away for Christmas. Again.
Post by: Dingdell on December 30, 2007, 11:27:40 PM
Great news Maureen - he's sitting up and it's another milestone reached.

Keep thinking positive. I can't say anything more as it all seems so banal compared to the stuff you're going through, but we are all wishing you everything.

Tracey x x


Title: Re: Reece goes away for Christmas. Again.
Post by: bobby1 on December 31, 2007, 01:02:31 AM
Well the little big man is taking it all in his stride, he is finding it hard to talk to us and this is so out of character as he is such a little chatterer. At 7 pm over 2 days since the op we got him to sit up, that is the first time he has got off his lay down position, but his surgeon said that he is coming in tomorrow to take him for a walk. His surgeon must be the most nicest person within his medical environment that we have met since Reece was born, he really is so committed, he cant stay away from him. He makes us feel that there is someone out there that is willing to give him a good chance at survival and trust me that is one bloody great feeling. I cant begin to describe what we are all going through, because words really will not even touch it, but calling Tony to give updates and talking to Tom especially is really helping, I will never be able to repay the kindness these fellas show to us.

great news.


Title: Re: Reece goes away for Christmas. Again.
Post by: suzanne on December 31, 2007, 07:39:45 AM
As Tracey said its hard to think what to say.

I want to be there and give you all a big hug and words cant do that.

Another bridge has been crossed and slow but sure he will get there im sure :-)

My best wishes are with you Stacey, Maureen and Darren and please take care of each other xxxx


Title: Re: Reece goes away for Christmas. Again.
Post by: charmaine on December 31, 2007, 08:14:19 AM
So pleased everything is going well Maureen .

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on December 31, 2007, 09:17:37 AM
Reece still has a line infection so has not been able to have his TPN for 2nights as he keeps spiking a small temp. We made him get out of bed yesterday he took around 10 steps assisted by us but he still has canula's in both feet which make it slightly uncomfortable for  him to walk so he tiptoed. He was not too impressed by this show of cruelty by us but it was better for us to do it than the surgeon as he was getting a little upset when the medical teamcome near him for anything more than temps and bag drainage. Hopefully today will see a big change in him, if he has no further temps the canula's can come out of his feet and one of the drainage bags can come off. Darren and I are sleeping there tonight as we want to be with him new year and Stacey is going to go home for the night and maybe just maybe go out. Reece has his own little side room so we do get a bit more privacy in there than we would on the ward. He is so very brave and has not moaned aboutanything yet, taking into account he is only just 3 and is happy to lay in bed watching his DVD,s and letting us tell him stories, unreal really. I can't help but think back at a work colleague that had a blood test recently which caused a bruise on their arm, they never stopped looking at it and say owwww ohhhh look what they have done  to me then I look at Reece with all this and think you are one very special brave little man.


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on December 31, 2007, 12:09:07 PM
Thanks Maureen.

Well, another year has gone by, and Reece is still at the plate, batting like a good un.

I hope 08 is good to you and yours.

XX


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on December 31, 2007, 04:51:11 PM
Thanks Maureen.

Well, another year has gone by, and Reece is still at the plate, batting like a good un.

I hope 08 is good to you and yours.

XX

Says it all.

What a brave lad he is, but he got lucky too, having such a special Mum, Nanna & Grandpa.


Title: Re: Reece goes away for Christmas. Again.
Post by: Harmony26 on December 31, 2007, 07:50:48 PM
Thanks Maureen.

Well, another year has gone by, and Reece is still at the plate, batting like a good un.

I hope 08 is good to you and yours.

XX

Says it all.

What a brave lad he is, but he got lucky too, having such a special Mum, Nanna & Grandpa.

Well said, both of you.

Thinking of you all,

Bainn & Harmony



Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on December 31, 2007, 09:58:03 PM
He's finaly home tucked up in bed but I have to keep him on his machines for 16 hours instead of the usual 12 in order to stop him dehydrating.His temp is a little low at the min so keeping a close eye on that. He is walking slowy and not too much, basically about 30 steps, prefers to be carried and he also lay on the couch for a short period whilst I prepped up his treatment. He still has a drainage bag which he will be keeping as on Wednesday we begin to start stretching his bowel. He can stay home subject to condition until Wednesday, when we have to return him to Pendlebury. It feels bloody great to have him home so very soon but I know we have a long long way to go with him, but have every confidence in Mr Morobito (his surgeon), this guy really does give it his all, he is a very big credit to the NHS, regardless of the outcome we feel so confident in this guy. Anyway darn't stay up too late just incase we have to dash off, so Happy New Year all.XXXXXXXXXX


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on December 31, 2007, 10:08:34 PM

A big up to Mr Morobito.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_duke on December 31, 2007, 10:45:26 PM
I understand that Morobito means everyone or all people in Japanese. It would seem that he's as good as his name and is a good man. All the best to all the family and my prayers are with you all.


Title: Re: Reece goes away for Christmas. Again.
Post by: Eck on January 01, 2008, 12:30:36 AM
We hope 2008 is a wonderful year for Reece.

Best wishes

James & Debbie


Title: Re: Reece goes away for Christmas. Again.
Post by: taximan007 on January 01, 2008, 01:49:47 AM
My Best Wishes to you all Maureen.

Here's to a Happy 2008.

image removed


Title: Re: Reece goes away for Christmas. Again.
Post by: tigger37 on January 01, 2008, 02:02:26 PM
Hey Maureen, haven't been on for a while but we were thinking of you on the 27th and glad Reece got to spend Christmas Day at home.  The pics are fab, looks like he had a good day.  Nice for you to get him home last night too for the New Year and his op went ok.  Thinking of you, David and Caz xxxx


Title: Re: Reece goes away for Christmas. Again.
Post by: bobby1 on January 08, 2008, 04:03:44 PM
Hi Maureen,

I hope Reece has had a good week and that everything is progressing well.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on January 08, 2008, 04:06:21 PM
Hi Bobby

Thanks , been a bit of an up n down so not even tried to post about it. Thanks for the post.x


Title: Re: Reece goes away for Christmas. Again.
Post by: bobby1 on January 08, 2008, 04:09:58 PM
no probs, when you feel up to it let us know how the little fella is doing.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on February 05, 2008, 06:23:35 PM
A little update..

Reece still has the line infection and has been on various antibiotics since the op, he just can not seem to shake it off. We are treating him at home where he is most happy. He now walks almost normally, apart from some discomfort with all the tubes, but has to go through the bowel stretching proceedure 4 x a day. Each time we put milk into his tummy through his gastrostomy, it is then held there for 2 hours ( this has been increased by 10 mins every so many days, he started off at holding it for 20 mins ),  we then put a bag on one of the new tubes he has coming out of his belly and drain it off, then we recylcy it inton another new tube into his colon, this reminds his bum to function as it is now cut off from the rest of his bowel in order to do this streching of the bowel. It takes up all the day to do this so we dont really get to go far with him, we have received a very kind donation from a blonde member which, when Reece is better, probably after the next op ,  we shall use to take him away for a couple of days but not too sure when that will be. He is doing well but we still have really not got much idea if it is working as he is vomiting quite a lot too.
Photo's to follow tomorrow.

Take care all Maureen.


Title: Re: Reece goes away for Christmas. Again.
Post by: Wardonkey on February 05, 2008, 06:31:56 PM
Thanks for the update Mo.

All the best. X


Title: Re: Reece goes away for Christmas. Again.
Post by: Harmony26 on February 05, 2008, 07:55:54 PM
Yes, thanks for keeping us informed, Maureen.

Thinking of you all and hoping you can see some success soon with the treatment and that the vomiting will cease.

TC

B&H xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on February 05, 2008, 08:36:52 PM
A little update..

Reece still has the line infection and has been on various antibiotics since the op, he just can not seem to shake it off. We are treating him at home where he is most happy. He now walks almost normally, apart from some discomfort with all the tubes, but has to go through the bowel stretching proceedure 4 x a day. Each time we put milk into his tummy through his gastrostomy, it is then held there for 2 hours ( this has been increased by 10 mins every so many days, he started off at holding it for 20 mins ),  we then put a bag on one of the new tubes he has coming out of his belly and drain it off, then we recylcy it inton another new tube into his colon, this reminds his bum to function as it is now cut off from the rest of his bowel in order to do this streching of the bowel. It takes up all the day to do this so we dont really get to go far with him, we have received a very kind donation from a blonde member which, when Reece is better, probably after the next op ,  we shall use to take him away for a couple of days but not too sure when that will be. He is doing well but we still have really not got much idea if it is working as he is vomiting quite a lot too.
Photo's to follow tomorrow.

Take care all Maureen.


My oh my, what a story Maureen.

We look forward to the pics.

My thoughts are with you all, as ever.

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: celtic on February 05, 2008, 08:46:00 PM
What tony said Maureen.

What a brave little man.

Looking forward to the pictures.

Vince


Title: Re: Reece goes away for Christmas. Again.
Post by: charmaine on February 05, 2008, 09:16:52 PM
Thank you for keeping us updated on Reece Maureen , look forward to seeing the pics  :)


Title: Re: Reece goes away for Christmas. Again.
Post by: HOLDorFOLD on February 05, 2008, 11:59:01 PM
Ditto.  My thoughts and prayers are with you x


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on February 06, 2008, 12:05:11 AM
lots of love to you all Maureen xx


Title: Re: Reece goes away for Christmas. Again.
Post by: redimp on February 06, 2008, 12:06:26 AM
Hope 2008 is a good year for you all.
My familys thoughts are with you
xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on February 06, 2008, 10:47:58 AM
Thinking of all of you and hope the little man finds comfort soon.  Hugs

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Dingdell on February 06, 2008, 10:30:39 PM
Oh Maureen - there is nothing to say - you just seem to keep on going. Fingers crossed that Reece is soon feeling better. Tracey xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Snatiramas on February 07, 2008, 07:58:30 AM
What a tough chap this Reece is.
It makes one as large as me feel very small...........
I hope this year brings a real up turn for Reece and the whole family

Hugs to all
Phil and family
xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on February 07, 2008, 12:06:42 PM
As promised a few pictures.
These were taken this week, some at our local museum where Reece loves to go. He has been twice this week alone, being that it is only 4 Min's drive from our home it is easy to take him there whilst his stretching process is in place, if he travels far he vomits the milk it back up which defeats the object.
This morning we received some tickets from the company I work for that have got a free offer for the Thomas Tank train day out taking place at York museum this month. We always struggle to take Reece for prepaid days out like this as he is usually sick on the day and monies are generally non refundable. Well work has been kind enough to send us 3 separate tickets for a choice of 3 different days so if Reece is sick one day he can go another.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on February 07, 2008, 05:25:51 PM


xx


Title: Re: Reece goes away for Christmas. Again.
Post by: boldie on February 07, 2008, 06:17:27 PM
Fantastic pictures..


Title: Re: Reece goes away for Christmas. Again.
Post by: taximan007 on February 07, 2008, 06:35:47 PM
Pictures look great Maureen, Thank You.

Reece is looking really good.

Best wishes to you all

taximan


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on February 07, 2008, 11:26:05 PM
Yes he does look well in these piccy's ..Thanks for replies.


Title: Re: Reece goes away for Christmas. Again.
Post by: bobby1 on February 07, 2008, 11:39:26 PM
lovely pics Maureen. I hope everything goes well. xx


Title: Re: Reece goes away for Christmas. Again.
Post by: charmaine on February 08, 2008, 12:01:52 AM
Lovely pics Maureen , i love he's facial expressions  :)


Title: Re: Reece goes away for Christmas. Again.
Post by: suzanne on February 08, 2008, 01:20:48 AM
He has a wee face that you just want to cup in your hands and smother with kisses and probably get a YUK!! in responce LOL

Thanks for the pics xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on February 28, 2008, 09:18:39 PM
A little update,

The little fella is doing good apart from a couple of things,  a, he still has not rid himself of the line infection that he has had since Dec 24th, at the moment we are trying a new (to Reece) antibiotic. as said previous, line infections are potentally life threatning. B, one of his rubber tubes that enters his bowel is leaking constantly, his surgeon is away this week so we need to see him on his return to determin what needs to be done. Apart from this he is of great spirits. Last week his surgoen told us that he is very close to the big op, but has not told us how close. He is up to holding his milk in for 2hr 20 mins so by the time one milk comes out the next has to go in.

Last week we took him to the National Railway Museum for the Thomas Tank day out, he loved it. Photos to follow toninght or tomorrow if time.


Title: Re: Reece goes away for Christmas. Again.
Post by: celtic on February 28, 2008, 09:21:25 PM
Still thinking about you all Maureen.

Best Wishes

Vince


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on February 28, 2008, 09:49:32 PM
Wonderful news Maureen, thank you. Please continue to keep us updated.

Thinking of you & yours, as always.


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on February 29, 2008, 01:19:45 PM
glad to hear things are progressing.  Will speak to you tonight no doubt xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on April 05, 2008, 10:50:00 AM
Just noticed I never put the photo's on last time I said I would so will attempt that before I go to work.

Update Time.

Reece has been doing remarkably well enduring the the pain that he sometimes suffers whilst we stretch his bowel. We have got it to 120 mil but now only 3 times a day, each time holding it in for 2 1/2 hrs each time. Recently, whilst I was changing his dressings ( which causes him a hell of a lot of discomfort and of which has to be done up to 7 times a day, depending on how much it is leaking) one of the tubes came out, my only option was to reinsert it back in immediately, so with Darren and Great Grandad John (Darren's dad) holding him down I eventually did it. I must have gone on auto pilot as when it is one of your own it hurts you as well as the child, but I succeeded and after,  shook like hell and cried. Reece slept for a while after as it took it out of him too. The holes where the tubes go into Reece have never healed proporly due to them always being moist, so they tend to swell and bleed a lot but he carries on regardless.

His humour is second to none, only the other day he was nibbling on sweets with his Grandad he said " would you like a sweetie Grandma ", " no " I relied, " I don't eat sweeties do I Reece". To which his reply came back " Do you just eat pies Grandma".

Anyway, yesterday we were told that his BIG operation has been pencilled in for the 23rd of this month. This is when we will now how well the bowel has reacted to all of this. It will be a very long op. They intend to take out the bowel cut the part that we have been stretching in two and make it twice as long, then reconnect it to the part that has been cut off for the stretching process. Bowels are funny organs, they don't like being touched they react differently than other organs do.

This op is going to cause the little man a tremendous amount of pain, we are not too sure how long he will be in hossy for but do recall Mr Morobito saying anything up to 6 months, but I may be mistaken as that was before his last op.

So for everyone concerned the next few weeks leading into months are going to be very stressful, but my main aim is make him as comfortable as possible.

Maureen.xx


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on April 05, 2008, 10:54:20 AM

You must be positive about the Op Maureen - it's Reece's big chance. But the worry that Darren, Stacey & yourself are carrying must be immense.

He's a very brave lad, & I'm sure he will cope better than the rest of you.

Please try & keep us informed.


Title: Re: Reece goes away for Christmas. Again.
Post by: Eck on April 05, 2008, 10:57:30 AM
Thanks for the update Maureen, hope it all goes well.

Best wishes to you all


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on April 05, 2008, 10:59:20 AM
Thinking of you all, as always.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on April 05, 2008, 11:15:18 AM
Photo's added..


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on April 05, 2008, 11:23:53 AM
Hope everything goes well over the next few weeks and months Maureen - Reece is such a trooper.

Lovely photos too xx


Title: Re: Reece goes away for Christmas. Again.
Post by: littlemissC on April 05, 2008, 11:27:39 AM
really lovely pics

all my love to you,darren and your whole family

FRAN  xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: Karabiner on April 05, 2008, 11:28:32 AM
My thoughts and hopes are with you and that brave little man.


Title: Re: Reece goes away for Christmas. Again.
Post by: Robert HM on April 05, 2008, 11:38:21 AM
Good luck xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: Graham C on April 05, 2008, 12:03:54 PM
All the best :)


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on April 05, 2008, 01:43:03 PM
He's such a sweetie and always in our thoughts and prayers.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Wardonkey on April 05, 2008, 02:03:33 PM
Best wishes. x


Title: Re: Reece goes away for Christmas. Again.
Post by: taximan007 on April 05, 2008, 03:21:52 PM
Thank you for the update and great pics Maureen.

My thoughts are with you all there


Title: Re: Reece goes away for Christmas. Again.
Post by: boldie on April 05, 2008, 04:10:12 PM
My thoughts and hopes are with you and that brave little man.


Title: Re: Reece goes away for Christmas. Again.
Post by: Harmony26 on April 05, 2008, 05:29:45 PM
Lovely to see the photos, Maureen, and thank you for the updates.

All the very best to you all for this big chance on the 23rd - our thoughts and prayers will be with you - leading up to this treatment, on the day of the op and the following months recovering.

Thinking of you all,

Bainn & Harmony


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on April 06, 2008, 01:33:21 AM
Thanks all , for replies and pm's.x


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on April 06, 2008, 11:52:02 AM
 :)up :kiss:


Title: Re: Reece goes away for Christmas. Again.
Post by: madasahatstand on April 06, 2008, 12:16:52 PM
Lovely pics Maureen , i love he's facial expressions  :)

I agree, he is looking really well Maureen and very happy. I laughed when I saw his face looking at the skeleton...the wonder of it all at that age is just amazing. Youre a rock to your family and should be very proud of yourself! Best wishes for the future x


Title: Re: Reece goes away for Christmas. Again.
Post by: sofa----king on April 09, 2008, 07:34:35 PM
what a brave little boy,,,,,,,,,,,,,,,,,,,,,................,.,.,.,.,
our thoughts are with you mo,all the way from cyprus,.,.,.,.,good luck.,.,.,.,and easy on the pies lol x x x


Title: Re: Reece goes away for Christmas. Again.
Post by: charmaine on April 09, 2008, 08:18:01 PM
bless him :)


Title: Re: Reece goes away for Christmas. Again.
Post by: londonpokergirl on April 09, 2008, 09:46:58 PM
such a sweet wee lad

thinking of you all and stay positive

Mel xx


Title: Re: Reece goes away for Christmas. Again.
Post by: bobby1 on April 09, 2008, 09:56:37 PM
All the best Maureen. xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on April 21, 2008, 07:16:57 PM
Well, THe little man has been staying with us again recenty and today we took him into hossy in prep for the big op on Wednesday. He was in good spirits as he aint a clue what is about to happen. With me having him here Stacey is Staying there tonight with him and we are catching up on what sleep we can muster. Tonight he will have a blood transfusion and another one again tomorrow, he will also be blood matched just so that all is sorted. Theater is booked for the full day on Wednesday, it is expected that he will be transfered to ICU at first then onto HDU after. Not too sure how I am feeling at the moment very mixed emotions. If I cant update on here I will call Tom or Tony and I am sure they will pass on updates to those who are interested via this thread.

Maureen.x


Title: Re: Reece goes away for Christmas. Again.
Post by: DUNK619 on April 21, 2008, 07:21:20 PM
best wishes hope all goes well xxxxx


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on April 21, 2008, 07:23:35 PM
all the best M


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on April 21, 2008, 07:23:50 PM
all the best Maureen x


Title: Re: Reece goes away for Christmas. Again.
Post by: turny on April 21, 2008, 07:23:57 PM
best wishes hope all goes well xxxxx


seconded


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on April 21, 2008, 07:58:26 PM
Thanks all, very much appreciated.x


Title: Re: Reece goes away for Christmas. Again.
Post by: Graham C on April 21, 2008, 08:06:47 PM
All the best to you all


Title: Re: Reece goes away for Christmas. Again.
Post by: bobby1 on April 21, 2008, 08:10:21 PM
Fingers crossed Maureen, he is so stronge.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on April 21, 2008, 08:13:46 PM
Will be thinking of all of you... especially him.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on April 21, 2008, 08:22:29 PM
He is so strong yes. A couple of weeks ago i took part of my thumb nail off, every time i did a choir i teneded to bang it  and mutter something like    oh ffs not again.  Then i though how he must feel on a daily basis and reprimanded myself.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on April 21, 2008, 09:52:43 PM

Well, the big day has arrived Maureen, & it has to happen. I'm sure he'll be just fine, he's such a battler.

I can only imagine what you, Darren & Stacey are enduring.

If possible, try & keep us informed, please.


Title: Re: Reece goes away for Christmas. Again.
Post by: Karabiner on April 21, 2008, 10:45:33 PM
I'll be funking for you big time.


Title: Re: Reece goes away for Christmas. Again.
Post by: taximan007 on April 22, 2008, 01:34:21 AM
Thinking of you, hope all goes well.


Title: Re: Reece goes away for Christmas. Again.
Post by: Harmony26 on April 22, 2008, 01:58:57 AM
Thinking of you all, Maureen, especially young Reece.

Bainn & Harmony


Title: Re: Reece goes away for Christmas. Again.
Post by: Robert HM on April 22, 2008, 03:46:41 PM
Good luck fella x


Title: Re: Reece goes away for Christmas. Again.
Post by: boldie on April 22, 2008, 03:47:56 PM
Good luck fella x



Title: Re: Reece goes away for Christmas. Again.
Post by: kinboshi on April 22, 2008, 04:00:10 PM
;goodluck;


Title: Re: Reece goes away for Christmas. Again.
Post by: Dingdell on April 22, 2008, 04:19:55 PM
Blonde holds its collective breath......good luck Maureen x x x x x


Title: Re: Reece goes away for Christmas. Again.
Post by: redimp on April 22, 2008, 06:57:52 PM
Thinking about you
xx


Title: Re: Reece goes away for Christmas. Again.
Post by: technolog on April 22, 2008, 07:09:20 PM
 ;goodluck;


Title: Re: Reece goes away for Christmas. Again.
Post by: celtic on April 22, 2008, 10:34:21 PM
 ;goodluck; and god bless reece.


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on April 23, 2008, 09:15:58 PM
Maureen just rang. Reece is out of surgery. The operation took almost 10 hours and Reece has over 2000 internal stitches.

He is now in intensive care. Maureen said he has tubes everywhere and he is on a ventilator.

The operation was a success in as much as they did what they set out to do. i.e. cut his stomach open and sew it back together in such a way as to double it's capacity.

Reece started out with only 18cm of intestine. Over the last few months that has been increased to 40+cm by forcing milk into it and then making him hold it there for ever longer periods.

Today, that 40+cm was doubled to 80+cm.

If I understand this properly. 80cm is viable. Enough to sustain life, but...

Over the next year they have to teach Reece to eat, (I don't think he ever has) and then hope that his stomach is capable of absorbing nutrients.

So, a long way to go, but today was a success, and that's all we could hope for.


Maureen is, as you will understand, absolutely shattered. but she asked me to thank you all for your kindness and promises to post when she can.

I apologise if I have got any of the facts wrong, when I was talking to Maureen I was very relieved and a little emotional.  The main thing is, he came through it and he's OK.




Title: Re: Reece goes away for Christmas. Again.
Post by: Robert HM on April 23, 2008, 09:21:22 PM
Thanks for that Tom

Wishing Reece all the best and his magnificent family



Title: Re: Reece goes away for Christmas. Again.
Post by: celtic on April 23, 2008, 09:22:58 PM
thanks for the update tom.


Title: Re: Reece goes away for Christmas. Again.
Post by: DUNK619 on April 23, 2008, 09:32:52 PM
best wishes to the little fella


Title: Re: Reece goes away for Christmas. Again.
Post by: booder on April 23, 2008, 09:37:20 PM
Thanks for that Tom

Wishing Reece all the best and his magnificent family



from me too


Title: Re: Reece goes away for Christmas. Again.
Post by: Ginger on April 23, 2008, 09:47:08 PM
Thanks for the update Tom.

Can't possibly imagine what they must all be going through, I'm always at a loss as to what to say.

Thinking of all your family Maureen, best wishes and positive vibes for Reece

xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on April 23, 2008, 09:48:06 PM
That's the best news ever!  Thanks Tom.  Hang in there Reece and Co.  We're thinking of you and hoping for a speedy recovery.


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on April 23, 2008, 10:04:17 PM
Thanks Tom.  Please give Maureen my love if you speak to her again and tell her I'm thinking of them all x


Title: Re: Reece goes away for Christmas. Again.
Post by: Graham C on April 23, 2008, 10:06:35 PM
Thanks Tom.  Please give Maureen my love if you speak to her again and tell her I'm thinking of them all x

Same here, best wishes to you all.


Title: Re: Reece goes away for Christmas. Again.
Post by: action man on April 23, 2008, 10:20:07 PM
great news that he is ok. big hugs and kisses to all the family. hope everything will turn out well. xx


Title: Re: Reece goes away for Christmas. Again.
Post by: sofa----king on April 23, 2008, 10:29:58 PM
what a good little boy,hope a feels well soon god bless.,.,.,.,


Title: Re: Reece goes away for Christmas. Again.
Post by: gatso on April 23, 2008, 10:40:37 PM
top news Maureen


Title: Re: Reece goes away for Christmas. Again.
Post by: charmaine on April 23, 2008, 10:50:02 PM
Really good news , hope Reece's recovery is speedy  :)


Title: Re: Reece goes away for Christmas. Again.
Post by: Karabiner on April 23, 2008, 10:54:44 PM
Really good news , hope Reece's recovery is speedy  :)

What she said, hoping and praying for the best here.


Title: Re: Reece goes away for Christmas. Again.
Post by: suzanne on April 23, 2008, 11:52:53 PM
Thanks for the update Tom.

Can't possibly imagine what they must all be going through, I'm always at a loss as to what to say.

Thinking of all your family Maureen, best wishes and positive vibes for Reece

xxx

Says it all..get well soon Reece x


Title: Re: Reece goes away for Christmas. Again.
Post by: bobby1 on April 23, 2008, 11:59:50 PM
Maureen just rang. Reece is out of surgery. The operation took almost 10 hours and Reece has over 2000 internal stitches.

He is now in intensive care. Maureen said he has tubes everywhere and he is on a ventilator.

The operation was a success in as much as they did what they set out to do. i.e. cut his stomach open and sew it back together in such a way as to double it's capacity.

Reece started out with only 18cm of intestine. Over the last few months that has been increased to 40+cm by forcing milk into it and then making him hold it there for ever longer periods.

Today, that 40+cm was doubled to 80+cm.

If I understand this properly. 80cm is viable. Enough to sustain life, but...

Over the next year they have to teach Reece to eat, (I don't think he ever has) and then hope that his stomach is capable of absorbing nutrients.

So, a long way to go, but today was a success, and that's all we could hope for.


Maureen is, as you will understand, absolutely shattered. but she asked me to thank you all for your kindness and promises to post when she can.

I apologise if I have got any of the facts wrong, when I was talking to Maureen I was very relieved and a little emotional.  The main thing is, he came through it and he's OK.




Thanks Tom. Fingers crossed for Reece.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_duke on April 24, 2008, 12:24:47 AM
everything is crossed -- all things being equal -- the love of a good family - the expertise of the surgical team -- the combined prayers of friends -- god bless for the future.....


Title: Re: Reece goes away for Christmas. Again.
Post by: MPOWER on April 24, 2008, 12:32:25 AM
Just keep fighting little chap.

Good Luck and get well soon.

Regards

M





 


Title: Re: Reece goes away for Christmas. Again.
Post by: redimp on April 24, 2008, 01:01:29 AM
Really good news , hope Reece's recovery is speedy  :)


Title: Re: Reece goes away for Christmas. Again.
Post by: turny on April 24, 2008, 01:09:22 AM
all the best reece x


Title: Re: Reece goes away for Christmas. Again.
Post by: Harmony26 on April 24, 2008, 01:29:18 AM
Thanks so much for the update Tom.  Please send them our love when you are next in touch.  Glad to hear the op achieved what it set out to do -  but what an ordeal for them all.  Wishing you a good recovery, Reece, and some peace and rest for Stacey, Maureen and Darren.

Love to you all,

Bainn & Harmony xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: I KNOW IT on April 24, 2008, 04:16:05 AM
All the best Reece
xx


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on April 24, 2008, 06:18:59 AM

Phew! What a relief. Onwards & upwards now, one step at a time.

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: boldie on April 24, 2008, 08:07:37 AM
Thanks for that Tom

Wishing Reece all the best and his magnificent family



What the man said.


Title: Re: Reece goes away for Christmas. Again.
Post by: Snatiramas on April 24, 2008, 10:16:48 AM
All the best to the whole family
Lots of love
Philxx


Title: Re: Reece goes away for Christmas. Again.
Post by: kinboshi on April 24, 2008, 10:18:43 AM
Thanks for that Tom

Wishing Reece all the best and his magnificent family



What the man said.

Exactly.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on April 24, 2008, 11:12:59 AM
Don' feel quite up to updating yet, just that he is still on a ventalator as his body has so much to deal with they want to take that added task away from him. They hope to start waking him today some time.  Just wanted to say thanks for all the wishes and please keep them vibes coming, we all need them especially the Hero.


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on April 24, 2008, 11:26:05 AM
 :)up cariad mawr


Title: Re: Reece goes away for Christmas. Again.
Post by: ericstoner on April 24, 2008, 11:35:08 AM
Take it slowly Maureen,you Stacey and Darren,will be truely surprised at Reece's capacity to recover quickly.
Remember he's in good hands.
Just be there for him, like you've always been.


Title: Re: Reece goes away for Christmas. Again.
Post by: Dingdell on April 24, 2008, 12:31:17 PM
Thank god. This thread just made me cry at the office. Fingers crossed Maureen, he's a fighter. xx


Title: Re: Reece goes away for Christmas. Again.
Post by: taximan007 on April 24, 2008, 01:02:57 PM
This is the thread that puts my current situation into complete perspective.

I wish young Reece all the very best in his recovery, my thoughts are with you all.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on April 24, 2008, 09:09:52 PM
Still in ICU. This afternoon after a few tests they decided to remove the ventilator and just put him on oxygen /nebuliser mask . He has coped well and is breathing all on his own. Acknowledge us a bit today, reached out his hands and nodded head yes or no to questions, but asleep most of the time, although he does know we are present. He is very very bloated, his face does not look much like our little Reece apart from his extra long eyelashes still on show even though his eyes are very puffy too. He still has his epidural in plus many many other drips and lines going into various veins all over him, from his neck right down to both feet. Some of the things we saw that he had to go through today would make the biggest of men cry, we were offered to leave but no way could we allow him to go through it on his own.

We have now returned home leaving Stacey there as tomorrow night I sleep then Saturday Darren sleeps. Only 1 allowed. The hossy is well over crowded, there is very little bed space and even less sleeping facilities for parents / families. Not the best of hospitals I have to admit but we need to have this surgeon as he really is the best for Reece. I can not fault the ICU team they are great but it is not nice at all to see what these kids endure on this ward.

One very moving moment was after he had the ventilator removed and all the tape, I asked him, are you happy Reece, which may sound silly at this point to you lot but it is statement we use with Reece a lot after he has endured discomfort, Well under the mask he made a smile, and when you see a child do that without opening their eyes , trust me it's a good feeling.

Anyway, long way to go and can not wait for his pain to be over with. Thanks again for the support, we need it.


Regards, Reece's family. xxx



Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on April 24, 2008, 09:43:21 PM
Thanks for the update Maureen - glad to hear Reece is recovering well.  Love you to you all xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: kinboshi on April 24, 2008, 10:08:17 PM
Thinking about you and the little fella Mo. 



Title: Re: Reece goes away for Christmas. Again.
Post by: Bainn on April 25, 2008, 12:50:25 AM
As always, our prayers and thoughts go to Reece and you all.

Bainn & Harmony.


Title: Re: Reece goes away for Christmas. Again.
Post by: snoopy1239 on April 25, 2008, 01:37:36 AM
Best wishes to you from myself and Dana.  ;pokergods;


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on April 25, 2008, 01:45:26 AM

x


Title: Re: Reece goes away for Christmas. Again.
Post by: bobby1 on April 25, 2008, 01:48:58 AM
Thanks Maureen.


Title: Re: Reece goes away for Christmas. Again.
Post by: boldie on April 25, 2008, 08:42:45 AM
Thinking about you and the little fella Mo. 




Title: Re: Reece goes away for Christmas. Again.
Post by: Poppet7 on April 25, 2008, 08:49:45 AM
Thinking of you x


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on April 29, 2008, 01:04:20 PM

I spoke at length with Maureen yesterday, & Reece is doing splendidly.

Firstly, his DVD player. Maureen popped across to see Kev in Manchester over the weekend. She told Kev his old DVD player was now working again, so he does not need a new one. The money already raised or pledged for it can be added to the residue of the cash Julian gave, & used for a family holiday when Reece is better. The family will need this more than Reece, truth to tell, as they've endured incredible stress.

However, when Maureen returned to the Hossie yesterday (Monday), Reece had thrown up alll over the old DVD player, so we are not sure if it will work again. Either way, if a new DVD player is required, the blondes have donated more than enough to sort one, & I told Maureen to go get one if it was needed, & we'll sort it.

Now, the Lad himself. I don't fully understand Reece's condition, but the rest of this is not for the squeamish, I'll try & relay it as I understood it. Look away now if you don't do squeam.

He has had most of his tubes & pipes removed. He still has a pipe in his nose, to drain matter, & still has to wear nappies, as he has no bowel control, & never has had.

While Maureen was there, she noted copious amounts of blood in his nose tube. His nappy also had bloodstains.

She called the consultant, who's not actualy "on call", & he came straight to the hossie. He seemed fairly relaxed about the blood, "not a problem" he thinks.

The next - & most vital step, is to get Reece to eat by mouth. (He remains nil-by-mouth). He's not even sipped fluids since last Wednesday, it's all intravenous. He has never - ever - been able to eat food by mouth, so it's going to be quite a challenging step to teach a 3 year-old to eat by mouth. Then there's his entire digestive system & stomach, intestines, bowel, etc, which has to learn to cope with solids. So that's crucial.

But the step before that is for him to pass a stool. & until he does, the eating by mouth training cannot begin. It's much more complex than I ever understood it to be.

Maureen & the Family are a bit up & down, the stress levels are dreadful. But they are getting there, slowly. He has severe bowel problems, but his heart is evidently big and strong.

Going back to the start of the problems, 3 years ago, it's a miracle he's made it this far, but, scores of operations (hundreds?) & he's still here, & bit by bit, getting better.

No matter how hard the task, it has to be done one step at a time. Climbing Everest is the same. But it can be achieved.

Best wishes to Reece from all at blonde. He won't let us down.


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on April 29, 2008, 01:13:58 PM
 ;goodluck;   :)up


Title: Re: Reece goes away for Christmas. Again.
Post by: boldie on April 29, 2008, 01:21:52 PM
Quote
Best wishes to Reece from all at blonde. He won't let us down.

What TJ said.


Title: Re: Reece goes away for Christmas. Again.
Post by: charmaine on April 29, 2008, 02:17:42 PM
An awful lot for one family to go through for so long !! goodluck Reece and family xxxx


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on April 29, 2008, 02:30:37 PM
x


Title: Re: Reece goes away for Christmas. Again.
Post by: Harmony26 on April 29, 2008, 09:45:14 PM
Thanks very much for the update, Tikay.

Thinking of you all, Maureen.

B&H xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: DUNK619 on April 29, 2008, 09:48:54 PM
Best wishes to the wholle familyxxxxxxxxx


Title: Re: Reece goes away for Christmas. Again.
Post by: kinboshi on April 29, 2008, 09:51:51 PM
Quote
Best wishes to Reece from all at blonde. He won't let us down.

What TJ said.

Reece will come through it.  He gets his stubbornness from his Gran... ;D


Title: Re: Reece goes away for Christmas. Again.
Post by: celtic on April 29, 2008, 11:20:36 PM
Best wishes to you all.

vince


Title: Re: Reece goes away for Christmas. Again.
Post by: Wardonkey on April 29, 2008, 11:26:13 PM
xox


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 01, 2008, 05:24:27 PM
Thank you Tony for the update whilst I have not been able.

Thank you Blonde for the ongoing support.

 We all have been spending a lot of time at the hossy with him usually taking it in turns, 2 nights for Stacey, 2 for me then 1 for Darren (as he needs to keep up an income). Also when I am not sleeping we spend the day there too and just return home at night. I have just returned home from my 2 nights and believe me I feel totally.....  bleep..... Not so much the taking care of Reece but the lack of rest. You see this hospital will close next year to be relocated to a brand new one, so to say it is dated is an understatement. Over crowding is a big issue, noise levels at night are terrible, last night was possibly one of the quietest nights I have spent on a ward since Reece was born and I managed around 2 hours kip. There are all races on these wards so there are many different cultures,  we all  tend to have a different way of life so even though visiting is all day to 8 pm  some people do not turn up 'till 8 pm due to religious prayer times etc. and tend to stay a little later which can cause problems with sleep patterns. Resulting in being totally knacker-ed the next day, but yey how do these people sleep all day through general ward noise.., whoosh.

Anyway, Reece once again has proved a bloody miracle, he has now had a bowel movement or two , not solid but it never has been , but he has at the end of the day got a bowel armed with approx two thousand stitches to start functioning. He also has had his NG tube removed and we are asperating from his gastrostomy when he feels discomfort but we do need this to reduce in levels. He is still on 24 hour TPN and replacement fluids, he is only used to being wired up to machines for 12 hours per night so this is a pain. He is walking easily already which was not expected at this early stage, playing like any other child and hardly complaining about his pain which everyone involved is very impressed with.

As Tony said the two next major steps are 1, Getting him to eat, Yesterday he was allowed to drink which he did after we removed the NG, but the eating is going to be so hard as he has never had to eat, only the odd nibble here n there. It looks like a very special diet, no wheat, gluton dairy etc. Now as most of you know getting a 3 yr old to eat what you want them to is hard never mind one that has never ate.

2, Getting the bowel to absorb nutrients from the food.


You see TPN gives him all he requires, he hardly feels hungry or thirsty on it, suppress the appetite, but we can not reduce the TPN until he eats and he will not want to eat until TPN is reduced as no hunger. Hard..yes it will be a long road but hopefully a chance of near normal life which this time last year we would not of dreamed of.


Regards Maureen.


Title: Re: Reece goes away for Christmas. Again.
Post by: bobby1 on May 01, 2008, 05:54:52 PM
Thats great news, cheered me up no end that, thanks and good luck mate.


Title: Re: Reece goes away for Christmas. Again.
Post by: boldie on May 01, 2008, 06:03:35 PM
Thats great news, cheered me up no end that, thanks and good luck mate.

What he said..great stuff!


Title: Re: Reece goes away for Christmas. Again.
Post by: Colchester Kev on May 01, 2008, 06:03:40 PM
Theres a Colchester cuddle here with your name on it ... you can pass it on the Reece xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 01, 2008, 06:12:19 PM
Oh btw, one has to sleep in a very aged hard semi reclining chair. Which when you move a tiny bit reverts to upright position. I was up n down all night. YES YES first time in ages b4 anyone of you say it.


Title: Re: Reece goes away for Christmas. Again.
Post by: Colchester Kev on May 01, 2008, 06:14:26 PM
Theres a Colchester cuddle here with your name on it ... you can pass it on to Reece xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 01, 2008, 06:16:46 PM
Theres a Colchester cuddle here with your name on it ... you can pass it on to Reece xx

This will be passed on and gratefully received. xx Oh and tell Ginger to reserve a seat for me at the toffee flavoured table.


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on May 01, 2008, 06:20:54 PM
Keep up the good work and news  :)up

having spent in a week in hospital with my brother i know exactly the comfort you can get in those splendid hospital chairs..


Title: Re: Reece goes away for Christmas. Again.
Post by: kinboshi on May 01, 2008, 06:30:26 PM
Good news Mo.  Onwards and upwards :)up


Title: Re: Reece goes away for Christmas. Again.
Post by: Ginger on May 01, 2008, 06:58:25 PM
Theres a Colchester cuddle here with your name on it ... you can pass it on to Reece xx

This will be passed on and gratefully received. xx Oh and tell Ginger to reserve a seat for me at the toffee flavoured table.

Fantastic progress from such a brave little boy.

Don't worry, your name is now firmly reserved for the toffee table(I think I under estimated how many bottles I'll need! lol)

Hugs and good vibes sent as always, see you soon.

xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on May 01, 2008, 07:07:08 PM

Incredible news. Thanks Maureen.

Plucky little bugger that boy, eh? 2,000 stictches, pipes stuck up every orifice, & he's running around like a 3 year old. Which, I suppose, he is.

He'll be alright.

In a cloudy month, he's been our ray of sunshine.

He was always the banker bet.


Title: Re: Reece goes away for Christmas. Again.
Post by: Wardonkey on May 01, 2008, 07:33:47 PM
Thanks for update Mo.

Great to hear that the op went well and that Reece is making such good progress.



Title: Re: Reece goes away for Christmas. Again.
Post by: booder on May 01, 2008, 07:36:30 PM
Thanks for update Mo.

Great to hear that the op went well and that Reece is making such good progress.



Likewise here M


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on May 01, 2008, 07:38:09 PM
Fantastic news, but unsurprising from such a little trooper! xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: Dingdell on May 01, 2008, 08:35:38 PM
Phew - general sighs of relief all round.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Horneris on May 01, 2008, 08:36:30 PM
Hes so Brave.

Good luck with it all Maureen & family.

Brent x


Title: Re: Reece goes away for Christmas. Again.
Post by: DUNK619 on May 01, 2008, 08:42:00 PM
best wishes as always xxxxx


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on May 01, 2008, 08:43:39 PM
SuperHero :)up


Title: Re: Reece goes away for Christmas. Again.
Post by: Eck on May 01, 2008, 08:44:39 PM
Great News Mo.

Best wishes

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on May 01, 2008, 08:45:37 PM
Absolutely DELIGHTED to hear that news!!!  Hugs to the wee lad and to the rest of you for looking after him so well.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: taximan007 on May 01, 2008, 09:19:50 PM
Thank you as always for the update Maureen. Great news.
The
(http://cdbaby.name/l/i/littlebigman.jpg)
is a
(http://www.j-popcdart.com/images/small/Superstar.jpg)
(http://www.bellathemovie.com/images/nutshell.jpg)


Title: Re: Reece goes away for Christmas. Again.
Post by: technolog on May 01, 2008, 10:23:02 PM
Keep it up littl'un!

Looking forward to meeting you at bB36 - but keep your hands off my blinds!!!

 :respect:


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on May 02, 2008, 07:39:23 AM
Hang in there. One step at a time.


Title: Re: Reece goes away for Christmas. Again.
Post by: Karabiner on May 02, 2008, 10:30:06 AM
Great news Maureen, love and hugs to all of you.

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: I KNOW IT on May 03, 2008, 01:13:32 AM
Great news Maureen. Love to Reece xx
Hope to see you soon


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on May 05, 2008, 01:04:25 PM

An excited Maureen just rung me (Monday, 1pm), - Reece has been allowed to go home for one night - tonight - but returns to Hossie tomorrow.

Why so excited?

Well, for a start, it gives the whole Family a break from the 24/7 "stop-over" rota at the Hossie. It's a bit complicated, actually, because he has all sorts of machines he's wired up to, & normally at home, they are upstairs, in his bedroom, & now they have to somehow get it all downstairs.

But the real message behind this is the fact that he is being allowed a day out of Hossie - which in turn shows the progress he has made. A 12 hour operation, with over 2,000 stitches, & a procedure that's probably never been tried before, & here he is, already, being given a 24 hour break from Hossie life.

And think what that means to a 3 year old, who must, by now, hate the sight, sound & smell of Hossies.

It's staggeringly good news.

We all knew that Boy would not let a "little op" bother him.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on May 05, 2008, 01:44:10 PM
That's made my day.  Thanks Tony and keep smiling Reece!  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 05, 2008, 03:32:05 PM
Just arrived back home, he is at this very moment running, yes running around in the garden, we need to put him on his machines at 5pm for 20 hours thenwhen he comes off he has to go back in but this is such a release for us all, we never in a million years anticipated this sort of recorvery so soon. He shocks the staff too.


Title: Re: Reece goes away for Christmas. Again.
Post by: Colchester Kev on May 05, 2008, 03:34:02 PM
Ship it ... fantastic news. xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: Wardonkey on May 05, 2008, 06:36:39 PM
 ;applause;


Title: Re: Reece goes away for Christmas. Again.
Post by: sofa----king on May 05, 2008, 06:54:41 PM
good news mo get your flights lol....


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 05, 2008, 07:48:28 PM
As Tony said in his diary, we were very kindly offered a free stay in a certain blondes villa. Unfortunatly Reece is no where near ready to go abroad, it was an opportunaty we would love to have taken and we are so very grateful to this blonde member for the offer. Believe me when we say we would love to have gone, Cyprus has very fond memories to Darren and myself, it was our late honeymoon destination. James has not given me authority to name him but I have taken it upon myself to do so and hope he does not take offence. Thank you Sofa----king. xxxx


Title: Re: Reece goes away for Christmas. Again.
Post by: b4matt on May 05, 2008, 07:52:20 PM
XXXXXXXXXX Love to all Mo


Title: Re: Reece goes away for Christmas. Again.
Post by: kinboshi on May 05, 2008, 07:55:45 PM
As Tony said in his diary, we were very kindly offered a free stay in a certain blondes villa. Unfortunatly Reece is no where near ready to go abroad, it was an opportunaty we would love to have taken and we are so very grateful to this blonde member for the offer. Believe me when we say we would love to have gone, Cyprus has very fond memories to Darren and myself, it was our late honeymoon destination. James has not given me authority to name him but I have taken it upon myself to do so and hope he does not take offence. Thank you Sofa----king. xxxx

Lovely offer Sofa. 


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on May 05, 2008, 08:18:01 PM
N1  :)up


Title: Re: Reece goes away for Christmas. Again.
Post by: cbass on May 05, 2008, 11:31:50 PM
Wow Maureen, when I saw you on Friday night I had no idea this thread existed, it certainly makes for emotional reading.  You probably know our daughter Holly spent many months in Great Ormond Street as a baby, and I well know that exhaustion after you've slept for about 3 minutes amidst all the noise.  It sounds as though young Reece is making a fantastic recovery so far and Norman and I wish him and you and your family all the best.  Aren't kids bloody amazing?  And actually, aren't parents and grandparents bloody amazing too?  People will say to you 'I don't know how you do it', but the fact is we both know that you just have to get on with it and look forward to the future.  I'm so glad you're getting support from this forum, I know I would have loved a network like this, and I shall follow Reece's progress from now on.

love and best wishes

Bev xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on May 05, 2008, 11:35:55 PM
Ship it ... fantastic news. xxx




Title: Re: Reece goes away for Christmas. Again.
Post by: turny on May 05, 2008, 11:38:05 PM
great news!


Title: Re: Reece goes away for Christmas. Again.
Post by: bobby1 on May 05, 2008, 11:51:49 PM
tremendous news.


Title: Re: Reece goes away for Christmas. Again.
Post by: KarmaDope on May 06, 2008, 10:09:16 PM
tremendous news.


Title: Re: Reece goes away for Christmas. Again.
Post by: Harmony26 on May 07, 2008, 10:05:22 PM
Delighted to hear this news.

All the best

B&H xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: sofa----king on May 07, 2008, 10:52:01 PM
As Tony said in his diary, we were very kindly offered a free stay in a certain blondes villa. Unfortunatly Reece is no where near ready to go abroad, it was an opportunaty we would love to have taken and we are so very grateful to this blonde member for the offer. Believe me when we say we would love to have gone, Cyprus has very fond memories to Darren and myself, it was our late honeymoon destination. James has not given me authority to name him but I have taken it upon myself to do so and hope he does not take offence. Thank you Sofa----king. xxxx

Lovely offer Sofa. 
no offence taken.,.,.,., good luck with the little fella..,.,.,.,,


Title: Re: Reece goes away for Christmas. Again.
Post by: snoopy1239 on May 08, 2008, 12:15:35 AM
As Tony said in his diary, we were very kindly offered a free stay in a certain blondes villa. Unfortunatly Reece is no where near ready to go abroad, it was an opportunaty we would love to have taken and we are so very grateful to this blonde member for the offer. Believe me when we say we would love to have gone, Cyprus has very fond memories to Darren and myself, it was our late honeymoon destination. James has not given me authority to name him but I have taken it upon myself to do so and hope he does not take offence. Thank you Sofa----king. xxxx

Lovely offer Sofa. 
no offence taken.,.,.,., good luck with the little fella..,.,.,.,,

Can I come instead?  ;angel;


Title: Re: Reece goes away for Christmas. Again.
Post by: sofa----king on May 08, 2008, 07:18:18 AM
As Tony said in his diary, we were very kindly offered a free stay in a certain blondes villa. Unfortunatly Reece is no where near ready to go abroad, it was an opportunaty we would love to have taken and we are so very grateful to this blonde member for the offer. Believe me when we say we would love to have gone, Cyprus has very fond memories to Darren and myself, it was our late honeymoon destination. James has not given me authority to name him but I have taken it upon myself to do so and hope he does not take offence. Thank you Sofa----king. xxxx

Lovely offer Sofa. 
no offence taken.,.,.,., good luck with the little fella..,.,.,.,,

Can I come instead?  ;angel;

sorry no pets.,.,.,.,.,especially.,.,.,dogs.,,,..,.,


Title: Re: Reece goes away for Christmas. Again.
Post by: kinboshi on May 08, 2008, 09:16:50 AM
As Tony said in his diary, we were very kindly offered a free stay in a certain blondes villa. Unfortunatly Reece is no where near ready to go abroad, it was an opportunaty we would love to have taken and we are so very grateful to this blonde member for the offer. Believe me when we say we would love to have gone, Cyprus has very fond memories to Darren and myself, it was our late honeymoon destination. James has not given me authority to name him but I have taken it upon myself to do so and hope he does not take offence. Thank you Sofa----king. xxxx

Lovely offer Sofa. 
no offence taken.,.,.,., good luck with the little fella..,.,.,.,,

Can I come instead?  ;angel;

sorry no pets.,.,.,.,.,especially.,.,.,dogs.,,,..,.,

He is a guide-dog for the blind, and they are usually allowed as exceptions.  Well, Dana must be blind....surely?


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 11, 2008, 10:55:57 AM
Charity begins at home.

That is what being part of the Blonde forum is to some,  a second home with a chosen  family. Like every large family it has it’s heated debates from time to time but last night at DT (http://www.dusktilldawnpoker.com/index.php?affiliate=blonde)D (http://www.dusktilldawnpoker.com/index.php?affiliate=blonde) we saw that family come together along with the DT (http://www.dusktilldawnpoker.com/index.php?affiliate=blonde)D (http://www.dusktilldawnpoker.com/index.php?affiliate=blonde) guys and donate money for Reece. I was lost for words when Tony called me up to hand over some money from you all and did not have it in me say just how grateful we are. I could not even try and thank you all individually face to face as it I do get very emotional. Then Paul Jackson along with Simon Trumper kept adding to the pot from other kind donations.

For any of you that have had to take care of someone with special needs and constant hospital journeys you will know it does take a big strain on not only your state of  mind but on your finances too.

Our aim is to take Reece on holiday as soon as he is able to do so. Truthfully it would be the obvious destination, Disney World but at this stage in his life that is a million miles away, as he is still reliant on machines, failing that a short break in the UK would be good for him. In total I was given £980 last night from you all , this will be added to the remaining £300 of Julian Thews recent donation and will be used accordingly to enrich Reece’s life in whatever way we feel he needs it. This will include a much needed family holiday.

From the bottom of our hearts we would like to thank you all for the money and the gifts  we received last night. You will never possibly know how much this all means to us.

THANK YOU BLONDE FAMILY and DT (http://www.dusktilldawnpoker.com/index.php?affiliate=blonde)D (http://www.dusktilldawnpoker.com/index.php?affiliate=blonde).

Regards Darren, Maureen, Stacey and the hero Reece.

XXXXX


Title: Re: Reece goes away for Christmas. Again.
Post by: Bainn on May 11, 2008, 12:05:14 PM
Was great to see you two yesterday.

All our thoughts and love,

Bainn & Harmony.


Title: Re: Reece goes away for Christmas. Again.
Post by: sofa----king on May 11, 2008, 01:09:22 PM
pure,pure class
its nice to know people care
well done blonde,dtd,thewy,paul,simon,and all who contributed
this really made me smile well done all......................................regards..............................james.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 14, 2008, 07:16:50 PM
As requested at the BASH more updates.   

Been at the hossy this week, my first night home and it feels nice. Reece is doing very well indeed. His surgeon is very pleased with him, he still is ringing at 10 pm to the ward to see how he is, he also comes at least once a day himself to chat.

Today he ate for breakfast a 1/4 bowl of rice crispies and 1/2 a piece of toast. He is now almost totaly restricted to his special diet, ie gluton , wheat, soya and  dairy free. He struggles on his veg but eats ham like there is no tomorrow. His TPN volume has been reduced by almost a 1/4 and he is now on for 16 hours per night until next week where we hope to reduce it to 14. He is allowed home again on Friday until Sunday, this will be his 2nd and 3rd night at home since the op. He will be staying here with me. Quite a few blondes mentioned that they would love to meet / visit Reece either at the hossy or when he is home and like I said you are most welcome to do so just pm me and we can arrange a suitable time, that also goes for anyone else that would like to also.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on May 14, 2008, 07:19:05 PM
Give the wee peanut a hug from across the river for us.

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on May 15, 2008, 01:21:37 AM

The miracle-boy continues to amaze. Great news Maureen.


Title: Re: Reece goes away for Christmas. Again.
Post by: Harmony26 on May 15, 2008, 02:04:33 AM
We're delighted to hear this news, Maureen.

Glad to hear Reece is doing so well with his eating and that his Consultant continues to be so attentive.

Enjoy yourselves with his next visit home.

Take care and give the young hero a big hug from us.

Bainn & Harmony

xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: sofa----king on May 15, 2008, 06:44:38 AM
this little boy dont half put things into perspective.,.,.,.,.,.,

(im worried about the trailer for the jet skis being fixed for the weekend) there are much more important things in life.,.,.,.,.,.,.,.,.

i love reading this little boys updates.,.,.,you know what,,,,my wife asks after him,,,,my mum and dad have asked.,.,.,how he is,.,.,and now my sister knows who this brave kid is, and asks after him.,.,.,
no one has asked about the trailer for the jet skis lol.,.,.,.,keep it up REECE.,.,.,.,.,


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 16, 2008, 08:09:46 PM
We picked Reece up at 11am and came home via Asda. Reece tootled off to his favorite place, the DVD section whilst I shopped. A lady that worked at Asda took a shine to Reece, she was impressed by his knowledge of the section at such a young age. She told Darren that she is not really into children but for some unknown reason felt drawn to Reece, she thought him a right character. Darren went on to briefly explain why Reece is so into DVDs, she then purchased a gift for him, a collection of Thomas Tank books. How nice are some people, total stranger had no need to even chat let alone give him a gift.

He has had a great day, eating is coming along nicely but I am struggling to get him to eat veg. He now knows what hunger is and tells us he needs food to fill his tummy and make his muscles grow like Grandads, cough cough splutter splutter. He is also putting weight on which is a very good sign as his volume of TPN has been reduced again. It feels like I have missed doing some of his cares as at the moment he is totally free of med's, all I have to do is put him on his TPN at night, it is a doddle compared to what I am used to doing, which took up every spare minute really. So it is nice to just enjoy having an almost normal child for the 7 hours he is free of his machines. It is also great now he has got rid of 2 of the tubes from his tummy. All he has now is his Gastrostomy, which we are giving him a small special milk feed over night through and his central line.


Title: Re: Reece goes away for Christmas. Again.
Post by: AndrewT on May 16, 2008, 08:15:01 PM
He has had a great day, eating is coming along nicely but I am struggling to get him to eat veg.

Sounds like a normal toddler to me Maureen. :)

Great news that everything is going so well xx


Title: Re: Reece goes away for Christmas. Again.
Post by: b4matt on May 16, 2008, 08:17:51 PM
Your truly amazing Mo, what you guys go through on a daily basis puts most mundane problems into perspective. I hope all's well in the Nunery and Darren and Stacey are ok. Love to all x x x x x


Title: Re: Reece goes away for Christmas. Again.
Post by: boldie on May 16, 2008, 08:20:43 PM
Top stuff...great to hear he's doing soo well.


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on May 16, 2008, 08:21:49 PM
 ;woohoo;


Title: Re: Reece goes away for Christmas. Again.
Post by: suzanne on May 17, 2008, 04:27:02 AM
Sounds like the wee man is doing great  ;mexicanwave;


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on May 17, 2008, 04:51:51 AM

The best Progress Report on Reece ever. Ever ever.

Thanks Maureen.

And don't be making him eat veg. It's not good for him.


Title: Re: Reece goes away for Christmas. Again.
Post by: Karabiner on May 17, 2008, 09:29:57 AM
Fantastic news Maureen.


Title: Re: Reece goes away for Christmas. Again.
Post by: charmaine on May 17, 2008, 11:51:38 AM
Best news anyone could wish for , so pleased for you all especially Reece  :)


Title: Re: Reece goes away for Christmas. Again.
Post by: Harmony26 on May 18, 2008, 03:31:29 PM
We're so delighted to hear this news and hope you all have a wonderful weekend!

B&H xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: sofa----king on May 18, 2008, 03:49:45 PM
would have loved to have seen his face on the jet skis lol.,.,
great news mo you should change yours and darrens name to mr+mrs nun angel.,.,.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 18, 2008, 06:28:17 PM
would have loved to have seen his face on the jet skis lol.,.,great news mo you should change yours and darrens name to mr+mrs nun angel.,.,.

Hopefully one day.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on May 18, 2008, 06:29:29 PM
Hope you've enjoyed the week-end together.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 18, 2008, 06:33:31 PM
Fantastic Laxie.

We actually did something today that we haven't been able to do with him. A thing that most take for granted but we loved it, we wentto bed after doing the garden for 2 hours, all three of us in our bed. No worrying about meds, or needs, it was such a great " normal " feeling.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 20, 2008, 12:43:46 PM
How about this for a surgeon.

Last night Reece wouldn't eat his tea after he saw the nurses having a Pizza delivered. He wanted to try it. So Antonino ( Mr Morabito his surgeon ) today has gone shopping to buy him some gluton free dough and will make him a pizza for his tea tonight. Now that's dedication.


Title: Re: Reece goes away for Christmas. Again.
Post by: Colchester Kev on May 20, 2008, 12:48:35 PM
 ;applause; ;applause; ;applause; ;applause;


Title: Re: Reece goes away for Christmas. Again.
Post by: Graham C on May 20, 2008, 12:49:22 PM
Fantastic stuff :D


Title: Re: Reece goes away for Christmas. Again.
Post by: boldie on May 20, 2008, 12:49:50 PM
How about this for a surgeon.

Last night Reece wouldn't eat his tea after he saw the nurses having a Pizza delivered. He wanted to try it. So Antonino ( Mr Morabito his surgeon ) today has gone shopping to buy him some gluton free dough and will make him a pizza for his tea tonight. Now that's dedication.

Fantastic!...and well done to the young man for realising that pizza is the way to go! :)


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on May 20, 2008, 12:56:03 PM
Fantastic Laxie.

We actually did something today that we haven't been able to do with him. A thing that most take for granted but we loved it, we wentto bed after doing the garden for 2 hours, all three of us in our bed. No worrying about meds, or needs, it was such a great " normal " feeling.

How about this for a surgeon.

Last night Reece wouldn't eat his tea after he saw the nurses having a Pizza delivered. He wanted to try it. So Antonino ( Mr Morabito his surgeon ) today has gone shopping to buy him some gluton free dough and will make him a pizza for his tea tonight. Now that's dedication.

Awwwwww, now ya've gone and put wee tears in me eyes.  Absolutely delighted to hear all the latest.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 20, 2008, 12:57:06 PM
I should shun you really Silo, but I won't .


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on May 20, 2008, 01:01:16 PM
thanks for the updates Maureen - sounds like he's doing just great xx


Title: Re: Reece goes away for Christmas. Again.
Post by: charmaine on May 20, 2008, 02:16:34 PM
Sounds like Reece has a very dedicated doc  :)


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on May 20, 2008, 02:49:57 PM
Geat news, Great doctor :)up


Title: Re: Reece goes away for Christmas. Again.
Post by: DUNK619 on May 20, 2008, 02:56:06 PM
Pizza ftw  best wishes 2 the whole family xxxx


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on May 20, 2008, 02:56:24 PM

Dr Antonino Morabito - Top Bloke. Official. We should make him a Lord. Can you have Lord Doctors?

Please tell Antonino that everyone at blonde loves him, & thanks him, & he'd be very welcome at the next blonde Bash as our Guest.

What an amazing recovery this lad is making, but he has the right Team on board. Can't fail.


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on May 20, 2008, 03:21:25 PM
Fantastic Laxie.

We actually did something today that we haven't been able to do with him. A thing that most take for granted but we loved it, we wentto bed after doing the garden for 2 hours, all three of us in our bed. No worrying about meds, or needs, it was such a great " normal " feeling.

was the Doctor in bed with you?


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 20, 2008, 03:24:04 PM
Well now Dewi, he is rather a handsome chap, Italion you know.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on May 25, 2008, 01:31:50 PM

How's Reece getting along now, Maureen?


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 25, 2008, 09:14:12 PM
Tony I sent you a picture text yesterday showing him tucking into his chicken wings he so loves, not too sure if you got it.

He's doing great, we have him here for the weekend, returning Monday pm as he has to have his bloods done on Tuesday am as he comes off his TPN. They do his bloods to balance out what nutrients etc they need to put in his TPN each day.
At the moment through his TPN his calorific intake is 450 (ish it's on his TPN dose upstairs but I cant be bothered to go look)and he still is not losing wieght, his eating was not great today and he wanted to stay in bed a little longer than usual. We are desperatly hoping that this is because he has the start of a cold and not a dreaded line infection.

Darren and I so wanted to spoil him this weekend as it is the first time since his op that we have had him home on 12 hours TPN ( which is what he used to be on ) and free of everything all day, apart from the reintroduction of 1 med twice a day to try and thicken up his stools. It is so much like having a " normal " child it is unreal, it's like...so this is what life should be like, obviously we are under a lot of pressure on the feeding side of things and are still very worried about getting too confident too early. It was so great to get in the car today knowing we were not in a rush to get anywhere in order to perform cares and not worrying about will he vomit etc. We have a long long way to go and I am personaly absolutley dreading a down period but take Tom's advice by taking it one day at a time and try not to look too far ahead.

Bainn and Harmony, thanks for the pressy we recieved through the post and the card. We let him do 2 pages a day out of the book, the other gifts you gave him went down a treat, thankyou.





Title: Re: Reece goes away for Christmas. Again.
Post by: TightEnd on May 25, 2008, 09:17:12 PM
Great stuff Maureen, continued best wishes to you all


Title: Re: Reece goes away for Christmas. Again.
Post by: DUNK619 on May 25, 2008, 09:19:47 PM
best wishes as always xxxxx


Title: Re: Reece goes away for Christmas. Again.
Post by: ChipRich on May 25, 2008, 09:23:15 PM
best wishes as always xxxxx
xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 28, 2008, 10:44:34 PM
Now we know Sonia is doing good, and thank goodness for that as my heart was going out to both Sonia and her family, I will post Reece's news.

I am fetching him home tomorrow, he has only been at the hoosy since Monday pm when I took him back after Stacey having a break and us doing the weekend shift.
Stacey is going to have a breather and he will come here. He lost weight last weeekend whilst at home ( 13.5 to 13.1 kg), this did not make me feel too good as
Antanino was not too happy, but after thinking a lot about it he is on reduced TPN, he is, once again, off his machines for 12 hours, thus enabling him to run freely
around, plus he has a cold. So they have decided to let him have a try at eating almost owt we can get into him apart from milk, eggs and small amounts of cheese. Lets hope I can stimulate his taste buds without doing too much harm.

He will be allowed home until Saturday, he has to go back to have his bloods done.


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on May 28, 2008, 10:47:56 PM
good luck M . I heard guinnes is good for weight gain  ;)


Title: Re: Reece goes away for Christmas. Again.
Post by: pokerram on May 28, 2008, 10:59:02 PM
all the best


Title: Re: Reece goes away for Christmas. Again.
Post by: charmaine on May 28, 2008, 11:00:03 PM
Hope you have a good time together Maureen , sure with all the running around Reece will be eating you out of house and home in no time x


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on May 28, 2008, 11:12:57 PM
Thinking of you all  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on May 29, 2008, 01:22:56 AM

Trememdous news Maureen, it - & he - just gets better & better.


Title: Re: Reece goes away for Christmas. Again.
Post by: madasahatstand on May 29, 2008, 07:22:43 AM
Brilliant news Maureen, all the best to you and enjoy yourselves :)


Title: Re: Reece goes away for Christmas. Again.
Post by: Tonji on May 29, 2008, 09:51:43 AM
All the best to you all Maureen.


Title: Re: Reece goes away for Christmas. Again.
Post by: pokerram on May 29, 2008, 01:36:01 PM
give reece all our love thinking of u all


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 01, 2008, 12:33:03 PM
Sunday 1st June 2008.                                                                   

Not too sure how we feel this weekend as our thoughts, as well as being excited are also for a close friend of Reece's and his mum, who over the last 3 three years have gone through the same as what we have. Whilst we have some good news they are going through the worst possible time.

Ishmael was born within a few days as Reece at St Mary's hospital Manchester. He too was born with very similar complications to Reece, suffering continuously and not ever getting the chance to be introduced to Antonino, not too sure why, but there we go, so many children aren't, it's all very controversial.

Ishmael, like Reece,  kept losing access veins to enable him to have his TPN, but unlike Reece his veins have not repaired. I think he was down to his last vein so Reece's procedure became not an option for him, too late basically. His only chance was a small bowel transplant and was put on the list at Birmingham. Then the dreaded wait began for them and trust me it is bloody awful waiting for that call, we went through it when Reece was on the list. Thursday night that call came and off went Shamin (mum) with Ishmael to Birmingham. The operation was performed all day Friday, he had a bad night Friday night and Shamin said he was fighting very strongly. Please God let him win this battle. Our thoughts are with them all especially the little hero.

We collected Reece Thursday and he came here to me for the night whilst Stacey caught up on sleep and prepared her house, as it has been vacant for a while, for Reece returning to her for the first time at home alone with his mum since the op as he has always come here on hossy leave nights to let Stacey chill out and do things that 2o year olds do.

He started vomiting in the mornings, this started alarm bells ringing in case it is the dreaded infection. His overnight milk feeds which they have started have been increased and we are hoping that is all it was as last night Stacey reduced the volume fed and he has not vomited this morning and also he has eaten more.

We are taking Reece back to the hossy tonight, we thought he had to be back last night but got a bonus night. Tomorrow night is a giant step for Reece, he will not be given his TPN. This is way ahead of when Antonino anticipated him to reach this stage. A couple of years ago this was tried but the next day he was all deflated and drawn and by lunch times he could hardly motivate himself , but now this op is looking successful to date, it is time to take the biggest step he has to take. It will mean he should be wanting to eat and drink a lot more on Tuesday and then the idea being is to give him every Monday off until we can try a Wednesday night too. It has to work as that is what this op was all about, getting him off TPN, long term TPN can be a killer as it attacks the livers causing liver failure like he has experienced previously.

So a very mixed weekend all in all, with us have trying to have a near normal life but being reminded constantly by thoughts of Ishmael's pain and suffering and Reece's giant step forward.

Regards Maureen.x



Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on June 01, 2008, 12:40:41 PM
Blimey.  It's a difficult spot to be in when you've been watching Reece's fight for so long and you're trying to enjoy the improvements, to have the well being of his wee friend stuck in your mind now too.  I hope Ishmael pulls through and you can all have a day at the park together in a few years time.  Watching the lads on some swings having fun, knowing what they've both been through.  xx 


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on June 01, 2008, 03:27:48 PM
When our son Tommy was poorly, we too shared our lives with the parents of other poorly children. What a double edged sword that is.

On the one hand, it's wonderful to have the encouragement and support of people who really truly do know what you're going through, (for some reason, it's sort of comforting to know that you're not the only ones) but on the other hand, it's heart breaking when they suffer a setback, or receive bad news.

Long term coping and caring for a seriously ill child is indescribably hard, both physically and mentally. When that child is your own flesh and blood, you enter a select, secret, exclusive club. A living nightmare world that only those other parents who are in the same boat can begin to comprehend.

Good luck to Reece, to Ishmael, and to all other parents and poorly children.

Where ever I am, and whatever I'm doing, there will always be a small part of me that is thinking of you all.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 01, 2008, 05:36:28 PM
Spot on postTom. Thankyou very much.
x


Title: Re: Reece goes away for Christmas. Again.
Post by: pokerram on June 01, 2008, 05:52:36 PM
all our family thinking of both reece and ishmael. not a religous man but god be with you all


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 03, 2008, 01:25:15 PM
Reece has managed his night off TPN. He had his bloods done this am and the result are no different than if he had his TPN which has made Antonino a very very happy man. He is still running around full of beans not yet flagging at all. Antonino has now informed us that he is so pleased with him that next week he will be free of TPN on the Wednesday too. We did not expect 1 night free a week this soon let alone 2. So all is well up to now.



Title: Re: Reece goes away for Christmas. Again.
Post by: Harmony26 on June 03, 2008, 01:53:03 PM
Pleased to hear this news of Reece's progress, Maureen.

Shall keep Ishmael and his family very much in our thoughts and prayers.

Love to all of you.

Good post Tom.


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on June 03, 2008, 01:56:11 PM
great news keep it up  :cheers: :)up


Title: Re: Reece goes away for Christmas. Again.
Post by: ericstoner on June 03, 2008, 02:33:12 PM
Maureen,great  to hear Reece is feeling better,of course my love goes to him.keep thinking of the great joy he'll bring you in the future.


Title: Re: Reece goes away for Christmas. Again.
Post by: boldie on June 03, 2008, 02:36:20 PM
Fantastic stuff!


Title: Re: Reece goes away for Christmas. Again.
Post by: Tonji on June 03, 2008, 04:28:03 PM
Lovely, all the best.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 11, 2008, 10:03:02 AM
Reece has not had the best of times over the last few days. He did come home for the weekend but we noticed he gradually started getting tired more quickly.

We took him out on Sunday to the seaside, or beachside as he has chosen to call it, but after his third ride on the fair he asked to go home. We returned him to the hossy where he has stayed with Stacey. He still had his night off TPN Monday but he spent yesterday in bed and has lost a considerable amount of weight, therefore he will not be having tonight off it as planned. He is coming home to see if that perks him up but we have to take him back for some tests tomorrow, if he is not too bad he can stay home for the weekend but has to take it easy, he tends to be at bit mad on the ward, running up and down so maybey  this is where he is using too much energy. His little arms and legs look so thin it saddens me.

He will stay with me from tomorrow onwards as it is Stacey's 21st tomorrow.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 11, 2008, 10:04:11 AM
Maureen,great  to hear Reece is feeling better,of course my love goes to him.keep thinking of the great joy he'll bring you in the future.

He brings us so much joy now Brenden, he has an amazing sense of humour for a 3 yr old.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on June 11, 2008, 10:06:09 AM
Really hope it's just a wee glitch in the radar Maureen.  He's been through a lot and is bound to be tired now and then, but have kept him in our thoughts and prayers even when the news is good.  Hugs to the wee lad and the rest of you.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on June 11, 2008, 10:12:52 AM
Stay positive Maureen, it will be OK.

XX


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on June 11, 2008, 10:13:03 AM
Really hope it's just a wee glitch in the radar Maureen.  He's been through a lot and is bound to be tired now and then, but have kept him in our thoughts and prayers even when the news is good.  Hugs to the wee lad and the rest of you.  xx

My thoughts exactly Maureen, keep us informed, please.

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Eck on June 11, 2008, 10:15:53 AM
Stay positive Maureen, it will be OK.

XX

What Red said..


Title: Re: Reece goes away for Christmas. Again.
Post by: Dingdell on June 11, 2008, 10:40:18 AM
Huggs Maureen xxxx


Title: Re: Reece goes away for Christmas. Again.
Post by: boldie on June 11, 2008, 10:58:03 AM
Really hope it's just a wee glitch in the radar Maureen.  He's been through a lot and is bound to be tired now and then, but have kept him in our thoughts and prayers even when the news is good.  Hugs to the wee lad and the rest of you.  xx

What the nice American lady said.



Title: Re: Reece goes away for Christmas. Again.
Post by: Snatiramas on June 11, 2008, 11:58:19 PM
A big hug from a big guy to a tougher small one.


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on June 11, 2008, 11:59:54 PM
thinking of you all xx


Title: Re: Reece goes away for Christmas. Again.
Post by: charmaine on June 12, 2008, 12:38:31 AM
thinking of you all xx

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on June 27, 2008, 05:46:12 PM

A bit of an Update, I was in touch with Maureen this morning. Here's what she wrote me, in a PM. I don't have her permission to Post it, but it's a special case, so I know she will understand, & I know the blondes like to know how Reece is shaping up.


Reece aint doing too well at the moment in his health. His eating is absolutely fantastic, there is no stopping him apart from veg. He eats fruit though and a lot of other stuff,  I am truly amazed at his apetite, but he can not hold it in and is pooing for England. This means he is losing weight, his weight last night was 12.5 kilos. He is skin n bone, on top of this we rushed him in last Saturday night with his first lineinfection since the op. He was put on antibiotics that we put straight down his central line 3x per day then came home to me on Monday. This too was not enough so I rushed him back in last night as he was spiking another temp. He is now staying in hossy on another Antibiotic that we feed him intraveeniously before we start his TPN infusion. We are trained to do this at home but with him not doing too well at moment he is staying in at least over the weekend so Stacey is staying with him. Antonino is on holiday but has been ringing daily and we have his mobile number to talk to him when needs be. He is aware he is back in and has been in constant contact with the ward last night

Athough he is poorly his spirits and humour is second to none still. He knows when he is ill but today says he is better. He is just lacking get up n go. So would we if we had constant trots and an infection on top.

I really don't feel I can play the Virgin-DTD Fessie this wekend though, I'd feel so guilty.


The rest was personal stuff, which I won't Post.

Anyway, I told her I'd give her a slap round the chops if she did not do the Virgin-DTD weekend. I know what she's thinking, but it's nonsense. She needs the break, & people wanna hear from here, one-to-one, how Reece is. So, I told her - she'd better be there. Or else.
 
As to Reece, it's a bit of a blow. He's turned 3 now, & he s more aware of what's what. We've all had the trots, but he has them non-stop. His little botty must be red-raw, poor lad. And it's a problem, there's no denying it. Getting him to eat was a miracle in itself, but it's no good if it goes straight through, as it clearly is, as he's as thin as a rake.

Buck up Reece, you've been through worse than this, & you'll sort it. And look after Nanny, too. You hear me boy?


Title: Re: Reece goes away for Christmas. Again.
Post by: Snatiramas on June 27, 2008, 05:58:07 PM
Thinking of you all xxxx Phil


Title: Re: Reece goes away for Christmas. Again.
Post by: madasahatstand on June 27, 2008, 06:05:46 PM
I agree with Tikay Maureen, you deserve a break and you are only a telephone call away. You need to look after yourself too as well as the wee man and all your family. Go play the game and win it!!

I do hope Reece gets through this quickly but remeber he is a fighter and I'm sure he will be okay. Great news about his appetite.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on June 27, 2008, 06:08:39 PM
Hang in there Chicka.  Thinking of Reece, you and the family always.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on June 27, 2008, 06:08:47 PM
I agree with Tikay Maureen, you deserve a break and you are only a telephone call away. You need to look after yourself too as well as the wee man and all your family. Go play the game and win it!!

I do hope Reece gets through this quickly but remeber he is a fighter and I'm sure he will be okay. Great news about his appetite.

Thanks Mad, that's exactly my (poorly-explained) thoughts.

Maureen is still dithering as to Virgi (http://travis.bosscasinos.com/re.asp?name=POK&camp=REF5111_0&go=http%3a%2f%2fwww.virginpoker.com)n (http://travis.bosscasinos.com/re.asp?name=POK&camp=REF5111_0&go=http%3a%2f%2fwww.virginpoker.com)-DT (http://www.dusktilldawnpoker.com/index.php?affiliate=blonde)D (http://www.dusktilldawnpoker.com/index.php?affiliate=blonde), & I badly want her to go.

Messages such as yours are exactly what is needed. She ignores me. Well, everybody does, come to think of it. Such is life as an OAP. ;)


Title: Re: Reece goes away for Christmas. Again.
Post by: Snatiramas on June 27, 2008, 06:27:15 PM
Hi Maureen......... my word I have written this post four times already and really Mad has summed it up. No one can influence your decision and I will not try other than to reconfirm that you need a break............

Oh and go and win it if you play,,,,,,,,,


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on June 27, 2008, 06:32:50 PM
thinking of you all Maureen xx


Title: Re: Reece goes away for Christmas. Again.
Post by: sofa----king on June 27, 2008, 06:37:54 PM
i dont have too many heroes.,.,.but this little kid is one of the biggest.,
as for maureen.,.,have a break and get it won.,.,mobile if your needed.,.,goooooooooooooone.,.,.,james..,.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on June 27, 2008, 06:55:22 PM
Didn't bother to suggest going in my first post as it was covered well by Tikay and Mad, but for the record...they're all right.    Everyone needs a break, but you need one more than everyone else.  For someone who is sooooo good at worrying about everybody else, you sure are crap at looking after you.  You're no good to the wee man if you're worn out.  So get yer backside to DTD this week-end and have some well deserved down time Chicka!!!   


Title: Re: Reece goes away for Christmas. Again.
Post by: boldie on June 27, 2008, 07:46:50 PM
Hi Maureen......... my word I have written this post four times already and really Mad has summed it up. No one can influence your decision and I will not try other than to reconfirm that you need a break............

Oh and go and win it if you play,,,,,,,,,

what Snatty said.


Title: Re: Reece goes away for Christmas. Again.
Post by: charmaine on June 27, 2008, 08:09:36 PM
Thinking of you all Maureen , good news about Reece eating hopefully everything else will be sorted asap .

Take a break and come back refreshed and full of energy coz no doubt young Reece will have you on your toes again in no time !!!


xx


Title: Re: Reece goes away for Christmas. Again.
Post by: DesD on June 27, 2008, 08:30:04 PM
I'd have to agree with what everyone is saying Maureen.  It's important that you take any opportunity to revive your spirts - even briefly - because people are undoubtedly relying on your strength at home.  You will be amongst friends at DTD, people who care, so do the sensible thing, take a little time off and recharge your batteries.   /:-|


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 29, 2008, 09:55:30 AM
Off to the hossy soon, Reece is not too good still. His temp keeps going up even though he is on a strong antibiotic, this morning it went up to 39.9. They can't use his central line as it has the worst infection growing in it that he can get. Therefore a some point today they will have to remove it.

Will update later again.


Title: Re: Reece goes away for Christmas. Again.
Post by: snoopy1239 on June 29, 2008, 09:56:09 AM
Good luck a the hospital.  ;pokergods;


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on June 29, 2008, 10:24:15 AM
Hope it all goes ok today Maureen.  Please let us know. xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: madasahatstand on June 29, 2008, 11:00:54 AM
Hope it all goes ok today Maureen.  Please let us know. xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on June 29, 2008, 12:03:16 PM
Ugh.  Thanks for the update and hope they can sort him out today.  Will keep prayers flowing for him.    xx


Title: Re: Reece goes away for Christmas. Again.
Post by: pokerram on June 29, 2008, 12:07:43 PM
how hearts are with you


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 29, 2008, 04:54:52 PM
They can't pull the line today as they need to scan his veins to see if he has another one that can take a new line as his veins aren't too good.This will be done tomorrow, Unfortunately Antonino is away until next Sunday and there seems to be a bit of controversy over decision making, he wants to do things one way but the on call reg says he is not God and decisions will be made in his absence. Mean while he is getting thinner by the day as he can not have his TPN due to the infection being bad, hence he is not getting the nutrients that he so badly needs. He looks awful to be honest.


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on June 29, 2008, 05:01:11 PM
sorry to hear that Maureen.  Lots of love and hugs for all of you (especially Reece), and hope all goes well tomorrow  and over the coming days xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: boldie on June 29, 2008, 05:37:56 PM

Good luck Maureen  ;pokergods;


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on June 29, 2008, 06:07:04 PM
Antonio knows Reece better than any on call reg would and the reg needs a good kick up the backside!  Will be thinking of you as always and hope things turn around for the better.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: boldie on June 29, 2008, 06:11:33 PM
Antonio knows Reece better than any on call reg would and the reg needs a good kick up the backside! 


agreed


Title: Re: Reece goes away for Christmas. Again.
Post by: mondatoo on June 29, 2008, 06:49:08 PM
sorry to hear that Maureen.  Lots of love and hugs for all of you (especially Reece), and hope all goes well tomorrow  and over the coming days xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on June 29, 2008, 07:48:21 PM
I'd say where Reece is concerned Antonio is his "GOD" no-one knows him better.

Good luck hope all goes well x


Title: Re: Reece goes away for Christmas. Again.
Post by: Graham C on June 29, 2008, 07:53:06 PM
sorry to hear that Maureen.  Lots of love and hugs for all of you (especially Reece), and hope all goes well tomorrow  and over the coming days xxx

Couldn't say any more, best wishes to you all


Title: Re: Reece goes away for Christmas. Again.
Post by: Wardonkey on June 30, 2008, 01:14:07 AM
Thinking of you all Mo.

xox


Title: Re: Reece goes away for Christmas. Again.
Post by: Snatiramas on June 30, 2008, 08:00:38 AM
Thinking of you all.........


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on June 30, 2008, 08:22:33 AM

Sorry to hear that Maureen, but stay strong for him.

He's had a thousand of these problems before, & beats them all.

It'll be OK, I'm sure, but it must be a terrible worry.

Give him my love, & a hug, please. And love to you, too.

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on June 30, 2008, 07:43:40 PM

Monday.

I am sorry to tell you, but Reece is no better, in fact he's gone downhill since last week. I've had a long note from Maureen, but it's too personal & graphic to detail in full here.

He has not had his new "line" yet, as the (stand-in) Surgeon is busy at another hossie, & Antonio is still away. He needs more antibiotic for the infection, too, but he's not strong enough to handle it right now. The new line should go in tomorrow, but the infection needs to abate a bit first, really.

His weight is falling alarmingly now, there's almost nothing of him, he is visibly losing weight daily, & Mauren is now very distressed. He has only had his TPN line 2 nights in the last 12, & he needs that twice a week minimum.

He has no energy now, & 10 minutes play at a time is all he can manage, he just asks to go back to bed then.

Everything hinges on him getting that new line in tomorrow - it's crucial. And to do that, they need to find a vein which can take it, & that's becoming increasingly difficult. Fingers crossed for tomorrow.

I hope you all understand how much your verbal/written support for Maureen helps her through these very difficult times. We can't help Reece much right now, but we can help Maureen in her hour of need.

I can't realy add much more.



Title: Re: Reece goes away for Christmas. Again.
Post by: Newmanseye on June 30, 2008, 07:48:22 PM
I hope with every fibre in my being that Reece gets better. If I was religious I would pray for him Maureen.

I hope you have the strength to endure until Reece gets better and I hope Reece battles through.

My Family's thoughts are with yours


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on June 30, 2008, 07:50:25 PM
I hope with every fibre in my being that Reece gets better. If I was religious I would pray for him Maureen.

I hope you have the strength to endure until Reece gets better and I hope Reece battles through.

My Family's thoughts are with yours

I'm lost for words, so those will do.   

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on June 30, 2008, 07:54:07 PM

Sorry to hear that Maureen, but stay strong for him.

He's had a thousand of these problems before, & beats them all.

It'll be OK, I'm sure, but it must be a terrible worry.

Give him my love, & a hug, please. And love to you, too.

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 30, 2008, 07:57:37 PM
Thanks all.

Tony made a little error in that Reece actually needs TPN 6 out 0f 7 nights, so this massive miss of nights is knocking him big time.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on June 30, 2008, 07:58:58 PM

Sorry Maureen, I misunderstood.

I'm sure tomorrow will be a better day for him, once he gets that new Line.


Title: Re: Reece goes away for Christmas. Again.
Post by: kinboshi on June 30, 2008, 08:02:01 PM

I hope with every fibre in my being that Reece gets better. If I was religious I would pray for him Maureen.

I hope you have the strength to endure until Reece gets better and I hope Reece battles through.

My Family's thoughts are with yours

I'm lost for words, so those will do.   

xx

Sums up what I'm feeling as well.  

{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}}


Title: Re: Reece goes away for Christmas. Again.
Post by: b4matt on June 30, 2008, 08:09:53 PM
All our love and thoughts are with you x x x x If there is anything at all i can do to help, lifts anywhere, shopping, anything, please don't hesitate to ask. x x x x x


Title: Re: Reece goes away for Christmas. Again.
Post by: AndrewT on June 30, 2008, 08:10:54 PM
Newmanseye's post puts my feelings better than I could.

Considering how well he was doing I feel a bit empty having read Tikay's post.

However, he's been so strong in the past, I'm sure he has still, as yet, untapped reserves of strength to draw on.

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: boldie on June 30, 2008, 08:44:30 PM
I hope with every fibre in my being that Reece gets better. If I was religious I would pray for him Maureen.

I hope you have the strength to endure until Reece gets better and I hope Reece battles through.

My Family's thoughts are with yours

Billy's post says it better than I could.


Title: Re: Reece goes away for Christmas. Again.
Post by: booder on June 30, 2008, 08:46:50 PM
I hope with every fibre in my being that Reece gets better. If I was religious I would pray for him Maureen.

I hope you have the strength to endure until Reece gets better and I hope Reece battles through.

My Family's thoughts are with yours

Billy's post says it better than I could.

xxxx


Title: Re: Reece goes away for Christmas. Again.
Post by: LLevan on June 30, 2008, 09:10:05 PM
Good luck to the little fella tomorrow..............fingers crossed here that they can find a vein............wishing all your family well in these difficult times.


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on June 30, 2008, 09:20:37 PM
((((((Maureen))))))  I really don't have anything to add to what the others have said, but just wanted to let you know I'm thinking of you, and got everything crossed for Reece.  Please feel free to drop me a PM any time you need someone to talk to or just sound off to.

lots of love xxxx


Title: Re: Reece goes away for Christmas. Again.
Post by: suzanne on June 30, 2008, 10:30:46 PM
It must be heart breaking to see him so poorly Mo, just remember he is a tough wee cookie and I am sure he will be fine.

As Claire said we are all here for you and praying that Reece has a speedy recovery xx


Title: Re: Reece goes away for Christmas. Again.
Post by: sofa----king on June 30, 2008, 10:53:01 PM
i am just writting you a nice poem to chear you up hun.,.,.,
he will be fine i just saw 2 shooting stars.,.,they were really bright ones.,.,and he got the both of them tonight.,.,


Title: Re: Reece goes away for Christmas. Again.
Post by: Tonji on July 01, 2008, 09:32:57 AM
My thoughts are with you xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on July 01, 2008, 09:35:09 AM
Thinking of you today and hope all goes better than has been over the last couple.  Give him a wee hug from us.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Karabiner on July 01, 2008, 10:14:39 AM
My thoughts are with all of you Maureen

XX


Title: Re: Reece goes away for Christmas. Again.
Post by: Graham C on July 01, 2008, 10:30:26 AM
Our thoughts are with you all.


Title: Re: Reece goes away for Christmas. Again.
Post by: boldie on July 01, 2008, 10:37:52 AM
Goodluck today Maureen.


Title: Re: Reece goes away for Christmas. Again.
Post by: Eck on July 01, 2008, 11:07:30 AM
Hope it goes well today Mo.

All our best wishes

James, Debbie & Samantha


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on July 01, 2008, 02:29:00 PM
xx


Title: Re: Reece goes away for Christmas. Again.
Post by: TheChipPrince on July 01, 2008, 02:40:07 PM
I feel strangley attached to this thread even though i've never met Maureen, gl with everything...


Title: Re: Reece goes away for Christmas. Again.
Post by: jizzemm on July 01, 2008, 02:53:45 PM
GL maureen. It was great to be behind you on Sat and have a little chat, and you seemed be able to put a smile on your face even with all thats going on..

Hope it goes well..
x


Title: Re: Reece goes away for Christmas. Again.
Post by: Harmony26 on July 01, 2008, 04:59:01 PM
It was good to meet up again, Maureen and Darren, on Saturday. 

This has been my first chance since to catch up with your news and I am so very sorry to hear it is such a very tough time for you all and that the Consultant is away longer than I thought, though God knows he will be doing his utmost as best he can.

Just know we are here, with all the rest of the forumites, wishing and willing you all all the very best, all the extra strength needed just now, and loads of love, hugs, thoughts and prayers for young Reece and you all.

B&H XXXXXXXXXXXXX


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 01, 2008, 09:56:09 PM
Only a very quick update tonight.

Reece eventually had his op this afternoon. They found a vein and to date it is succesful, this was in the past quite a simple proceedure but today required a more special team to be on hand due to his condition. He is now on his TPN and resting.

I have to say I am overwhelmed with the posts and Pm's, which I will reply to as soon as feel up to it. Sofa, your a star poet.

All your support means much more than you will ever understand.

xx



Title: Re: Reece goes away for Christmas. Again.
Post by: suzanne on July 01, 2008, 09:58:49 PM
Great news..get well soon Reece x


Title: Re: Reece goes away for Christmas. Again.
Post by: Harmony26 on July 01, 2008, 10:01:45 PM
XXX


Title: Re: Reece goes away for Christmas. Again.
Post by: pokerram on July 01, 2008, 10:03:33 PM
get well soon reece all the best xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on July 01, 2008, 10:04:30 PM
good news - thanks for letting us know xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: Snatiramas on July 01, 2008, 10:06:09 PM
Thx for the update Maureen

Big hugs to Reece

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: jizzemm on July 01, 2008, 10:06:42 PM
Thx for the update Maureen

Big hugs to Reece

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on July 01, 2008, 10:10:25 PM
Newyddion da iawn ;)


Title: Re: Reece goes away for Christmas. Again.
Post by: Robert HM on July 01, 2008, 10:11:42 PM
Thx for the update Maureen

Big hugs to Reece

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Wardonkey on July 01, 2008, 10:11:51 PM
Thx for the update Maureen

Big hugs to Reece

xx

xox


Title: Re: Reece goes away for Christmas. Again.
Post by: Graham C on July 01, 2008, 10:17:22 PM
Thx for the update Maureen

Big hugs to Reece

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on July 01, 2008, 10:19:41 PM
Such a relief!!!  Delighted to hear they finally got his TPN sorted and hope he's back to his ol' self soon.  Hugs to the lot of ya.  xx 


Title: Re: Reece goes away for Christmas. Again.
Post by: technolog on July 01, 2008, 10:45:42 PM
Fantastic news Maureen!


Title: Re: Reece goes away for Christmas. Again.
Post by: mondatoo on July 01, 2008, 11:02:42 PM
Delighted for you and your family, as chipleader said although i have never met you i feel like i do hope all continues to go better for you,reece and your family

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: sofa----king on July 01, 2008, 11:47:14 PM
so glad that everything is comming along.,.i told you hes a fighter x


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on July 02, 2008, 12:24:59 AM

We should never have doubted the lad, he did it again.

Result.

And the way the blondes have supported Maureen is just so wonderful. You should see the Poem Sofa cobbled together.

x


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on July 02, 2008, 12:46:44 AM
great news  :)up


Title: Re: Reece goes away for Christmas. Again.
Post by: boldie on July 02, 2008, 08:32:06 AM
Thx for the update Maureen

Big hugs to Reece

xx

xox


Title: Re: Reece goes away for Christmas. Again.
Post by: charmaine on July 02, 2008, 10:05:38 AM
So Glad the op went well Maureen , hopefully little Reece will be back on track very soon .

Your a star Nana Maureen xx


Title: Re: Reece goes away for Christmas. Again.
Post by: madasahatstand on July 03, 2008, 07:18:08 PM
As Charmaine says, Maureen, you really are a star and one strong lady too!! Remeber your faith is the wee mans faith and I know you got plenty to keep up the fight!!

I'm thinking about your family and sending all the positivity in the world to you. Make sure you catch it!!


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 04, 2008, 11:53:29 AM
I'm off to the hossy this afternoon to give Stacey a night off. I have spoken to her this morning and she said that today he is in slightly better spirits, playing again out of his room and on the ward talking to other children. Reece requested that I bring him in some strawberries so that's a good sign too.

He has regained some of the weight already by way of being back on the TPN and continous milk feeds through his gastrostomy, 4 hours on 1 off.

I too feel better today, yesterday I felt rather low during the afternoon in which Tom got the brunt of. Thanks Tom.


Title: Re: Reece goes away for Christmas. Again.
Post by: boldie on July 04, 2008, 12:06:50 PM
I'm off to the hossy this afternoon to give Stacey a night off. I have spoken to her this morning and she said that today he is in slightly better spirits, playing again out of his room and on the ward talking to other children. Reece requested that I bring him in some strawberries so that's a good sign too.

He has regained some of the weight already by way of being back on the TPN and continous milk feeds through his gastrostomy, 4 hours on 1 off.




Very happy to hear some good news, thank you very much for keeping us uptodate on what's going on.


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on July 04, 2008, 12:10:16 PM
I'm off to the hossy this afternoon to give Stacey a night off. I have spoken to her this morning and she said that today he is in slightly better spirits, playing again out of his room and on the ward talking to other children. Reece requested that I bring him in some strawberries so that's a good sign too.

He has regained some of the weight already by way of being back on the TPN and continous milk feeds through his gastrostomy, 4 hours on 1 off.

I too feel better today, yesterday I felt rather low during the afternoon in which Tom got the brunt of. Thanks Tom.


cariad mawr xx


Title: Re: Reece goes away for Christmas. Again.
Post by: pokerram on July 04, 2008, 01:15:09 PM
good news give reece our love


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on July 04, 2008, 03:59:56 PM
I'm off to the hossy this afternoon to give Stacey a night off. I have spoken to her this morning and she said that today he is in slightly better spirits, playing again out of his room and on the ward talking to other children. Reece requested that I bring him in some strawberries so that's a good sign too.

He has regained some of the weight already by way of being back on the TPN and continous milk feeds through his gastrostomy, 4 hours on 1 off.

I too feel better today, yesterday I felt rather low during the afternoon in which Tom got the brunt of. Thanks Tom.


great news Maureen - glad you're feeling better too xx


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on July 04, 2008, 06:00:31 PM

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: DesD on July 04, 2008, 08:22:44 PM
Great news....the little fellow's a real figher... :)up


Title: Re: Reece goes away for Christmas. Again.
Post by: ripple11 on July 04, 2008, 09:04:10 PM
Great news....the little fellow's a real figher... :)up


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 05, 2008, 08:46:29 PM
Not so much a fighter today,

He is getting tired very quickly indeed. Not eating but being sick. Antonino is back soon so all will be sorted soon and I can't wait.

x


Title: Re: Reece goes away for Christmas. Again.
Post by: Snatiramas on July 05, 2008, 08:51:26 PM
Not so much a fighter today,

He is getting tired very quickly indeed. Not eating but being sick. Antonino is back soon so all will be sorted soon and I can't wait.

x

Head up tough lady.......

Thinking of you all

XXX


Title: Re: Reece goes away for Christmas. Again.
Post by: madasahatstand on July 05, 2008, 08:53:04 PM
Maureen keep strong xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Tonji on July 05, 2008, 08:57:31 PM
Maureen keep strong xx


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on July 05, 2008, 08:59:04 PM

Thinking of you both.

x


Title: Re: Reece goes away for Christmas. Again.
Post by: sofa----king on July 05, 2008, 10:15:19 PM
im sure everyone on this forum sends your familly at the little fella all good wishes,
hope he has a better day tomorrow hun,,,,,x x x


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on July 05, 2008, 10:35:31 PM
im sure everyone on this forum sends your familly at the little fella all good wishes,
hope he has a better day tomorrow hun,,,,,x x x

 ;iagree; ;iagree; ;iagree;


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 05, 2008, 11:52:47 PM
I(f i posted that tonight my mt=y husband and his dad tried to stop a local hold up at a one stop and got beat up by 15 to 20 teenagers how many of you would belive me.#


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 05, 2008, 11:55:28 PM
It is the total truth.

Darren has probably one or 2 broken ribs    plus a very stiff and swollen ankle.

The police said ..do you need an ambulance?

What ? for a broken rib...behave..


Title: Re: Reece goes away for Christmas. Again.
Post by: Colchester Kev on July 05, 2008, 11:57:10 PM
Jesus .... hope they are both ok apart from the bruises ...


Title: Re: Reece goes away for Christmas. Again.
Post by: madasahatstand on July 05, 2008, 11:58:12 PM
Jesus .... hope they are both ok apart from the bruises ...
me too!


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 06, 2008, 12:01:06 AM
Remember this boys n girls.. regardless of what the local police say....look after your own.


Title: Re: Reece goes away for Christmas. Again.
Post by: Snatiramas on July 06, 2008, 08:30:19 AM
Jesus .... hope they are both ok apart from the bruises ...
me too!
+1 and no making Darren laugh young lady. What are the police doing about it?? I say these groups should be found and individually put into the stocks and see how tough they are then. By the way I am more than tired of the blaming of everybody else for these lunatics problems.


Title: Re: Reece goes away for Christmas. Again.
Post by: boldie on July 06, 2008, 03:30:36 PM
Jesus .... hope they are both ok apart from the bruises ...
me too!
+1 and no making Darren laugh young lady. What are the police doing about it?? I say these groups should be found and individually put into the stocks and see how tough they are then. By the way I am more than tired of the blaming of everybody else for these lunatics problems.

+1..either have them clean up the neighbourhood as community service (nothing cool about having to clean up someone else's shit...a lot less cool than them having to go to jail) or stick them in the army.. that'll sort them out.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on July 16, 2008, 12:11:46 AM
So, back to Reece, on this thread which, remarkably, has chronicled his battles for over 6 months now.

Maureen, as you know, is a bit pulled out right now, with Reece, & Darren, & other stuff that has no place here.

But she's incredibly heartened by all the PM's & good wishes. Believe me, they matter so much - please, please, keep them coming. Without them, I'm not sure she'd have coped. Well,she would, but you get my drift - they DO help, a LOT. Just a one-line note, little & often, helps. She does not have time to reply to all of thm - it does not matter, send them anyway. They do help.

We are trying to persuade her to come to Blackpool this weekend, but as you can imagine, that's a difficult one for her, given all that's gone off - some folks just don't "get it".

I've been unable to keep in touch with her as much as usual, out here in Vegas, I've been a bit pre-occupied, & anyway, Tom contacts her daily, so the duplication of effort just causes her more work. Tom updates me almost every day, by PM or 'phone-call.

Tom went to see Maureen, Reece & Darren a few days back.

Reece, well, not as good as any of us might have hoped, but he hangs in, as always.

He had a dramatic weight-loss, but that's been stemmed now, but it's proving impossible to get him to put weight back on, so he's very frail, & tires easily. Food = energy, & he does not eat.

Tom's latest note to me - today - said.....

They stopped his milk feeds and doubled his intravenous (TPN) calorie intake form 300 to 600 per night. Maureen is trying to get him to eat but he has no appetite. What's more, he's been prescribed gluten free bread, he doesn't like it, and it's expensive.

Maureen says that in spite of everything, he's quite bright and animated, so it's not all bad news.


So, there you have it. Reece battles away, like a good 'un, as brave as ever. He's three, you know. 

He's been "with blonde", & you've been helping, for over 2 years now - I wonder how many hossie visits & ops he's had in those two years? Just imagine the workload for his family, in that time. 2 whole years, 24/7.

Is he better than 6 months ago? In some ways, yes. In other ways, no. And right now, no.

Keep the good vibes coming please, it really helps.

Tom sent me two 'photos of him.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on July 16, 2008, 12:14:23 AM
.


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on July 16, 2008, 12:22:50 AM
Pob Lwc xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: Tonji on July 16, 2008, 12:31:33 AM
I've only meet Maureen once, & only briefly, but I don't think a day goes by without my thoughts turning to Reece, Maureen & all the family. All the best xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on July 16, 2008, 01:01:00 AM
thinking of you all as always.  thanks for sharing the pics Tom/Tikay - they are lovely :)


Title: Re: Reece goes away for Christmas. Again.
Post by: suzanne on July 16, 2008, 01:17:14 AM
I so wish I lived near so I could give some real help.

Stay positive Maureen.

It chokes me up to see hes still smiling after all hes been through.

Lovely pics.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on July 16, 2008, 06:11:18 PM

Yes - Tom tells me that Reece actually gained a little bit of weight yesterday - result!

It was the vibes what did it.

Send more.


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on July 16, 2008, 06:12:56 PM

Yes - Tom tells me that Reece actually gained a little bit of weight yesterday - result!

It was the vibes what did it.

Send more.

great news!


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on July 16, 2008, 07:17:59 PM
 ;letsparty; ;mexicanwave;

N1  :)up onwards and upwards


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on July 17, 2008, 04:04:40 AM
Hang in there wee man and thanks for keeping us updated lads!!!  Thinking of ye all the time.  Will ring when we return from America.

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: sofa----king on July 17, 2008, 07:48:10 AM
i wish i was a secret millionaire.,.,.,.,
great news that reece has gained a little weight,,,a little is better than none,,,
WELL DONE TO RED-GOG and mrs red ,, for the home visit..,.,hes a good man.,.,old school.,.,.,type of guy
                i hope you didnt frighten reece with that moustache,,,


Title: Re: Reece goes away for Christmas. Again.
Post by: redimp on July 17, 2008, 08:58:17 AM
Lovely pics
Thinking about you all
xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 07, 2008, 09:17:06 PM
As requested, but Without boring you all too much, Reece is at the moment off TPN 3 nights per week, which is more than he has ever been and far more than we could expext from his old care team.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on September 07, 2008, 09:17:49 PM
That's not boring...it's BRILLIANT news!!!  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Indestructable on September 07, 2008, 09:21:33 PM
That's not boring...it's BRILLIANT news!!!  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: technolog on September 07, 2008, 09:23:30 PM
Great news Maureen! Long may it continue.


Title: Re: Reece goes away for Christmas. Again.
Post by: pokerram on September 07, 2008, 09:40:01 PM
great news hope it continues


Title: Re: Reece goes away for Christmas. Again.
Post by: Snatiramas on September 07, 2008, 09:47:33 PM
That's not boring...it's BRILLIANT news!!!  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on September 07, 2008, 09:56:42 PM
You have to give him credit Maureen, he's a bloody trier.


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on September 07, 2008, 10:56:39 PM
Great news Maureen! Long may it continue.

xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: Graham C on September 07, 2008, 11:06:31 PM
Great news Maureen, really great news :)


Title: Re: Reece goes away for Christmas. Again.
Post by: amcgrath1uk on September 07, 2008, 11:09:16 PM
Great news Maureen, really great news :)

+1


Title: Re: Reece goes away for Christmas. Again.
Post by: celtic on September 07, 2008, 11:34:55 PM
very good news maureen. long may it continue.

thanks for update.


Title: Re: Reece goes away for Christmas. Again.
Post by: Tonji on September 07, 2008, 11:40:33 PM
very good news maureen. long may it continue.

thanks for update.

all the best


Title: Re: Reece goes away for Christmas. Again.
Post by: Supernova on September 07, 2008, 11:52:43 PM
That's not boring...it's BRILLIANT news!!!  xx

+1


Title: Re: Reece goes away for Christmas. Again.
Post by: TheChipPrince on September 08, 2008, 12:01:16 AM
That's not boring...it's BRILLIANT news!!!  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_duke on September 08, 2008, 12:31:58 AM
As requested, but Without boring you all too much, Reece is at the moment off TPN 3 nights per week, which is more than he has ever been and far more than we could expext from his old care team.

THAT has just made my year


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on September 08, 2008, 08:43:17 AM
what a great start to the week and long may it continue x


Title: Re: Reece goes away for Christmas. Again.
Post by: ripple11 on September 08, 2008, 09:55:07 AM
Great news Maureen, really great news :)

+1

+2


Title: Re: Reece goes away for Christmas. Again.
Post by: boldie on September 08, 2008, 07:38:38 PM

+3..truly good stuff.


Title: Re: Reece goes away for Christmas. Again.
Post by: Wardonkey on September 08, 2008, 07:42:46 PM
 ;hattip;

Keep on truckin'.


Title: Re: Reece goes away for Christmas. Again.
Post by: mondatoo on September 08, 2008, 08:45:24 PM

Yeah Excellent news you were due something good to happen to you, really good to hear.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on September 09, 2008, 04:00:42 AM
Wonderful!

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on September 09, 2008, 10:10:59 AM
That's brilliant news. Well done young man.


Title: Re: Reece goes away for Christmas. Again.
Post by: Dingdell on September 09, 2008, 01:07:49 PM
Yeaaah! Good news Maureen. xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 09, 2008, 04:38:19 PM
Reece has been accepted into a play school. He starts next week going three times per week for a couple of hours a day. There was a meeting today with his community care team and the school.

Nerve racking or what.

Just hope the other kids don't pull his line or owt if they happen to see it.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on September 09, 2008, 04:42:47 PM
THAT'S GREAT!!!   ;cheerleader; ;applause; ;applause; ;cheerleader;  Absolutely delighted for the wee lad and for all of you. 

Also, I'd be surprised if the staff don't keep an extra eye on him, so I wouldn't worry too much.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 09, 2008, 04:46:31 PM
Tx, They are receiving some training, in prep.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on September 09, 2008, 04:56:02 PM
Better again!  Blimey.  Something so many other families take for granted, but a very big step for all of you. 


Title: Re: Reece goes away for Christmas. Again.
Post by: Eck on September 09, 2008, 04:56:33 PM
That's superb news Mo, really happy for the wee man  :kiss:


Title: Re: Reece goes away for Christmas. Again.
Post by: Harmony26 on September 09, 2008, 05:04:04 PM
Delighted to hear all the latest news, Maureen.  It is exciting and daunting for you all but what a step forward.  I am sure the training will be of the best and the staff will really take it all on board what a responsibility they have.  Big hugs of continuing support as well as congrats to you all.

B&Hxxx


Title: Re: Reece goes away for Christmas. Again.
Post by: DUNK619 on September 09, 2008, 05:10:17 PM
best wishes to the little fella hope all goes well


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on September 09, 2008, 05:41:28 PM
that made me  ;D


Title: Re: Reece goes away for Christmas. Again.
Post by: The_duke on September 09, 2008, 05:42:50 PM
that made me  ;D

Him and me both


Title: Re: Reece goes away for Christmas. Again.
Post by: technolog on September 09, 2008, 06:01:44 PM

So pleased.


Title: Re: Reece goes away for Christmas. Again.
Post by: ericstoner on September 09, 2008, 07:17:17 PM
I bet Stnacy,you and the  rest of team reese are made up, onwards and  upwards for the little fella,1st base hit,go on my son.......thoughts with you as always.


Title: Re: Reece goes away for Christmas. Again.
Post by: Nakor on September 09, 2008, 07:27:52 PM
best wishes to the little fella hope all goes well


Title: Re: Reece goes away for Christmas. Again.
Post by: reenot on September 09, 2008, 09:49:49 PM
best wishes to the little fella hope all goes well


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 10, 2008, 06:29:38 PM
Tx all.

Should be able to put  some new photos on after tomorrow as weather permitting we are taking him to Drayton Manor.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on September 10, 2008, 07:02:31 PM

Play school!

Marvellous. What progress he's made.


Title: Re: Reece goes away for Christmas. Again.
Post by: redimp on September 10, 2008, 07:31:58 PM
Fantastic news,we shall be thinking about the little fella next week.
I'am sure he will love it.
xoxox


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on October 14, 2008, 06:25:59 PM
Long time coming I know and sorry for the delay as so many people have asked for an update.

Reece started play school and attends three times per week for 2 hours a day. He does enjoy it once he is there but prefers to go to Grandma and Grandads. He doesn't cry just lets you know he will stay for a while but that's it.

Health wise. Today we had a casual meeting with Antonino and Lynette, his dietitian, they ar always casual as that is how Antonino is. He now weighs in at 13kg's, so there has been a slight increase in weight but saying that his bones and height are growing too. Antonino is very pleased with him. For every 5grams of fat he eats we have to spoon some little tiny balls into him via a yogurt to try and get his body to digest fat. We also inject via his gastrostomy 20 mils of a fat med three times a day.

He is now successfully off TPN 3 nights a week and next week sees our first attempt with two nights consecutively, which is the next major major step in his transition to a normal life. At the moment he has Mondays Wednesdays and Fridays. Next week he will have Sunday night off at home then we will take him and Stacey into hospital on Monday and they will assess him in preparation for not having it that night. If he copes this will continue for the next 3 weeksish then he will drop his 5Th night. It is anticipated that by December he will be free of machines. I can only dream of this happening, whilst trying to stay positive I also don't want that big slap in my face, I just don't think I could cope again, so I am trying to be level headed about it. Stacey got quite excited today by the news, her eyes lit up.


Overall Reece is well ahead of his years, he knows and understands so much it is at times scary to hear him talk of adult things that he really,  in his young years should not have to think about. His  sense of humour is second to none and loves to sing and make you laugh. We have been so gifted to have Reece in our lives, just looking at him brings tears in my eyes on so many occasions.

We took Reece to Drayton Manor and I am now trying to post some of the pictures.

Thanks all for the continuing support.

Maureen.
 




Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on October 14, 2008, 06:37:03 PM
thanks for the update Maureen - sounds like he's doing great xx


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on October 14, 2008, 06:40:45 PM


It is anticipated that by December he will be free of machines

A true miracle.

How is Darren now? And you?

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on October 14, 2008, 06:45:56 PM
We are both fine, apart from the knee on the leg that didn't get broke, it clicks all the time and keeps giving way possibly from the strain of taking the weight a lot during the break. We are also getting over the way the offenders were in our eyes let off so to speak. Anyway you, 3 months since you said you would be visiting when you returned from Vegas, tea's turned to Iced tea  ;) Leave it much longer and it will be his wedding next time you see him.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on October 14, 2008, 06:53:07 PM
Sooooooo glad he's doing as well as he is!  Thinking of ye all the time.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Dingdell on October 14, 2008, 06:54:03 PM
Fingers crossed Maureen xx


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on October 14, 2008, 06:58:05 PM
We are both fine, apart from the knee on the leg that didn't get broke, it clicks all the time and keeps giving way possibly from the strain of taking the weight a lot during the break. We are also getting over the way the offenders were in our eyes let off so to speak. Anyway you, 3 months since you said you would be visiting when you returned from Vegas, tea's turned to Iced tea  ;) Leave it much longer and it will be his wedding next time you see him.

Ugh, sorry Maureen, you are right, I did promise. I'm so disorganized, it's untrue.

I planned to write to you & thank you for getting us out of the poo by doing the DTD Live Update, but I thought I'd better read the Update first, so I knew what I was talking about, rather than just paying lip-service. Bt I've not even opened it yet....

One of these days I'll get up to date. I'm sorry, no excuses for not coming up to see you all really.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on October 14, 2008, 07:24:56 PM
.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on October 14, 2008, 07:26:20 PM
Pic's are too small doing it this way. I will have to make an album I think when more time.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on October 14, 2008, 07:27:29 PM
.


Title: Re: Reece goes away for Christmas. Again.
Post by: technolog on October 14, 2008, 07:59:17 PM
Brilliant news Maureen! The pics are great too.


Title: Re: Reece goes away for Christmas. Again.
Post by: Tonji on October 14, 2008, 08:30:37 PM
Brilliant news Maureen! The pics are great too.

+1

Its lovely to hear of Reece's progress  :)up


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on October 14, 2008, 09:38:34 PM
Great news,great pics keep it up...


Title: Re: Reece goes away for Christmas. Again.
Post by: sofa----king on October 14, 2008, 09:43:48 PM
great news mo.,.,anychance of you booking flights i will book a 5 star villa for you whenever you are ready to fly to cyprus,.,.all you need is flights,,,


Title: Re: Reece goes away for Christmas. Again.
Post by: Graham C on October 14, 2008, 10:02:15 PM
Brilliant news Maureen! The pics are great too.

+2, Great news Maureen :)


Title: Re: Reece goes away for Christmas. Again.
Post by: amcgrath1uk on October 14, 2008, 10:04:26 PM
Brilliant news Maureen! The pics are great too.

+2, Great news Maureen :)

+ 3 :)


Title: Re: Reece goes away for Christmas. Again.
Post by: Robert HM on October 14, 2008, 10:46:35 PM
Brilliant news Maureen! The pics are great too.

+2, Great news Maureen :)

+ 3 :)

+ another


Title: Re: Reece goes away for Christmas. Again.
Post by: suzanne on October 14, 2008, 11:54:36 PM
Thanks for the update Maureen, wow he looks great!!!


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on October 15, 2008, 11:12:37 AM
Thanks all.


Title: Re: Reece goes away for Christmas. Again.
Post by: mondatoo on October 16, 2008, 03:30:38 PM

Really brilliant news good to see things seem to being looking up for you now


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on October 25, 2008, 05:41:40 PM
Reece managed his 2 nights off TPN without his blood tests faltering so this week he will remain at home and do it all again. Off TPN Sun / Mon / Wed and Friday. We are feeling more confident as the weeks go by. Due to less accessing of his central line it means that the dreaded line infection risks have reduced dramatically. Early Nov Antonino wants to go for the 5th night off. Thanks all for the continued support.


Big thanks to Tom who has always been on the end of the phone.

A FRIEND WHO JUST STANDS BY. 

By B. Y. Williams

When trouble comes your soul to try,
You love the friend who just "stands by."
Perhaps there is nothing he can do--
The thing is strictly up to you;
For there are troubles all your own,
And paths the soul must tread alone;
Times when love cannot smooth the road
Nor friendship lift the heavy load,
But just to know you have a friend
Who will "stand by" until the end he's needed,      ( I changed this word as it was final for the poet)
Whose sympathy through all endures,
Whose warm handclasp is always yours--

It helps, someway, to pull you through,
Although there's nothing he can do.
And so with fervent heart you cry,
"God bless the friend who just "stands by'!"

Thanks Tom. xx



Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on October 25, 2008, 07:05:25 PM
That's great news Maureen, I'm thrilled.

I'm also a little embarrassed that you should thank me, I could do so little. All the same, you are very welcome.

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on October 25, 2008, 07:48:33 PM
Gr8 news and continued best wishes for the little mans future progress  :)up :)up


Title: Re: Reece goes away for Christmas. Again.
Post by: Harmony26 on October 26, 2008, 11:11:57 PM
Great news.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on November 09, 2008, 06:47:07 PM
Here we go again. The Little Big man has succeeded in dropping another night, he has for the last 3 weeks had TPN on Tuesday, Thursday and Saturday's, this week he goes into hossy on Thursday to drop his 5Th night.

His weight isn't great, I weighed him last night pre TPN and after him not having it on Friday and he was 12.7 kg, tonight after eating till his hearts content, or tummy, he weighed in at 13.4.

His legs look very thin and his arms do too but his pooing has dramatically reduced from anything up to 10 per day, sometimes a lot more,  to today only 1 so far, this has to be a good sign. He has not had a line infection now for ages, months since the last serious one, although on the nights he has TPN we do administer an antibiotic into his central line, this maybe enough to keep things at bay.

Never in our widest dreams did we ever think we would see this day, we are so grateful for finding Antonino and him willing to take Reece on, how does one thank someone for the gift of life?. This will be his first birthday and Christmas that we can celebrate without clouds hanging over us. There will be no tears when he opens his presents unlike other years, no negative thoughts, just positiveness, if that's a word.


Title: Re: Reece goes away for Christmas. Again.
Post by: Snatiramas on November 09, 2008, 07:50:46 PM
I am so so pleased with your news..........and if positiveness is not a word it should be


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on November 10, 2008, 10:43:35 AM
Absolutely delighted for all of you, but especially the wee man!  Really looking forward to meeting him some day.  He's a proper inspiration if ever there was one.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on November 10, 2008, 10:45:55 AM
great news xx


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on November 10, 2008, 10:47:05 AM
I can't tell you how pleased I am.

XX


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on November 10, 2008, 10:50:59 AM
Bendigedig ;applause; ;applause;


Title: Re: Reece goes away for Christmas. Again.
Post by: sledge13 on November 10, 2008, 10:57:35 AM
Great stuff, have a great christmas!


Title: Re: Reece goes away for Christmas. Again.
Post by: Dingdell on November 10, 2008, 01:23:02 PM
Wonderful news Maureen. Has Reece ever been to a panto? If not perhaps this is the year to take him. I vote for a Blonde Bash at the panto.

Tracey  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on November 10, 2008, 04:56:25 PM
Thanks all,

Not been to a panto yet Ding.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on November 10, 2008, 05:33:19 PM

Just wonderful Maureen, a true miracle, & God Bless Antonio.

Can you help explain what "TPN" means, please?


Title: Re: Reece goes away for Christmas. Again.
Post by: Karabiner on November 10, 2008, 05:38:32 PM
Fantastic news Maureen, I'm so pleased for all of you.

XX


Title: Re: Reece goes away for Christmas. Again.
Post by: booder on November 10, 2008, 05:41:23 PM
Fantastic news Maureen, I'm so pleased for all of you.

XX


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on November 10, 2008, 07:09:14 PM
TPN = Total parental nutrition. Vamin and Lipid.

It is what kept Reece alive. It is fed to him via a central line that goes straight into the main archery directly into his blood system, it is fed to him over 12 hours. It consists of 2 bags that go on drip stands and through pumps, and contains all he needs to survive, made special for each patient depending on thier individual blood results, and altereted accordingly week by week,  electrolites and all that sort of stuff. The Vamin contains them and the lipid contains a fat that also kills the livers as well as giving him what he requires to survive. We were trained up to do this at home, along with administer any drugs he may need to fight off infections , my house is like a mini hossy, syringes needles giving sets, paper hand towels , dressings, sterile this and that dpecial hand wash, etc the list is endless but was all worth it to have him home, albeit nerve racking to begin with.

This is is Reece when he was 4.5lbs. His line can be seen to the far side of his chest.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on November 10, 2008, 07:12:32 PM
This is him now.


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on November 10, 2008, 07:18:05 PM
Brilliant maureen, just brilliant. Such lovely pitures of the brave little soldier.

Kev and Joo xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Graham C on November 10, 2008, 09:13:22 PM
Fantastic news Maureen, I'm so pleased for all of you.

XX


Title: Re: Reece goes away for Christmas. Again.
Post by: boldie on November 10, 2008, 09:15:43 PM
Fantastic news Maureen, I'm so pleased for all of you.

XX

+1...2 if you count MrsB :)


Title: Re: Reece goes away for Christmas. Again.
Post by: redimp on November 10, 2008, 09:17:24 PM
What fantastic news..x


Title: Re: Reece goes away for Christmas. Again.
Post by: Harmony26 on November 12, 2008, 10:15:52 PM
Bainn and i are delighted to hear this brilliant news.



Title: Re: Reece goes away for Christmas. Again.
Post by: Robert HM on November 13, 2008, 12:54:55 AM
Brilliant maureen, just brilliant. Such lovely pitures of the brave little soldier.

Kev and Joo xx

+ another


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on November 25, 2008, 10:23:05 PM
Reece has had a little setback - nothing too serious, but he's spending the night in Hossie just to be safe. It's "just" a 'flu virus, but he lacks strength & immuniity, so it's best to be safe, & it has knocked him back a bit.

He remains "on the up" generally, & I suppose these setbacks are to be expected now & then.

Fingers crossed for the Little Lion.


Title: Re: Reece goes away for Christmas. Again.
Post by: Snatiramas on November 25, 2008, 10:27:49 PM
Big hugs to you all xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on November 25, 2008, 10:28:10 PM
hope you're back on the up soon little man xx


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on November 25, 2008, 10:29:54 PM
hope you're back on the up soon little man xx

It's Reece, not me.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on November 25, 2008, 11:32:01 PM
UGH.  Thinking of the wee lad and all the family.  Speedy recovery.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Robert HM on November 25, 2008, 11:33:08 PM
UGH.  Thinking of the wee lad and all the family.  Speedy recovery.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Graham C on November 25, 2008, 11:37:09 PM
hope you're back on the up soon little man xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on November 25, 2008, 11:48:38 PM
hope you're back on the up soon little man xx

It's Reece, not me.

::)


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on November 27, 2008, 02:51:49 PM

Reece is back home after his brief re-admission to Hossie. Maureen says he seems to be ok, but his weight has dropped again, to 12.4 kilos.

So the priority now is to try & get some weight back on him. When he's underweight, & lacks the correct nutrition, his body defences are lower, & so it's not ideal.

That apart, he's bright & cheery.


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on November 27, 2008, 02:56:42 PM
Da iawn, mae sion corn a'r ei ffordd xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on December 07, 2008, 12:22:30 PM
Two major events this week.

This Thursday the 11Th December 2008 Reece will reach the grand age of 4.
This Wednesday the 10Th December 2008 Reece will be going into hospital to drop his final night of machines. He is only on them one night a week now for the usual 12 hours. If he doesn't start to lose too much weight, he is a little on the thin side, this will mean that together, Reece and Antonino have successfully battled against the odds and proved many others wrong. Stacey said this week however did we manage doing TPN 7nights a week along with all his other cares like stretching his bowel, my answer was however did Reece manage. We would gladly do it all again for he is so worth it. Once it is proved that Reece is absorbing and eating enough then the last surgical procedure will take place. Removal of his central line, his life line as was. This will be a joyous day for us but may have a psychological effects for Reece as he has had in total 14 lines in total and he thinks it is part of him as it is like an arm or leg to him, he has never known any different. That will be the time when we can take him into a swimming pool and he can splash and play like any other child. He will also have to have his gastrostomy removed.


Fingers crossed.


Title: Re: Reece goes away for Christmas. Again.
Post by: Dingdell on December 07, 2008, 12:24:43 PM
Two major events this week.

This Thursday the 11Th December 2008 Reece will reach the grand age of 4.

This Wednesday the 10Th December 2008 Reece will be going into hospital to drop his final night of machines. He is only on them one night a week now for the usual 12 hours. If he doesn't start to lose too much weight,

he is a little on the thin side, this will mean that together, Reece and Antonino have successfully battled against the odds and proved many others wrong. Stacey said this week however did we manage doing TPN 7

nights a week along with all his other cares like stretching his bowel, my answer was however did Reece manage. We would gladly do it all again for he is so worth it. Once it is proved that Reece is absorbing and eating

enough then the last surgical procedure will take place. Removal of his central line, his life line as was. This will be a joyous day for us but may have a psychological effects for Reece as he has had in total 14 lines in total and

he thinks it is part of him as it is like an arm or leg to him, he has never known any different. That will be the time when we can take him into a swimming pool and he can splash and play like any other child. He will also have

to have his gastrostomy removed.


Fingers crossed.

Good to hear Maureen - you couldn't really have a better christmas present than Reece at home and as healthy as he can be xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Robert HM on December 07, 2008, 12:28:17 PM
Fingers crossed here x


Title: Re: Reece goes away for Christmas. Again.
Post by: Colchester Kev on December 07, 2008, 12:34:14 PM
Fingers crossed here x

1 time !!!


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on December 07, 2008, 12:48:35 PM
I think I know where this a scrap of a boy
finds the strength to continue the fight
At the end of the long dark tunnel
you are standing there, holding a light.

WP Maureen.

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on December 07, 2008, 12:52:55 PM

I don't know what to say.

Just Thank God.

x


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on December 07, 2008, 12:58:18 PM

I don't know what to say.

Just Thank God.

x

That is the problem see Tony, we just do not know how to thank our God, Antonino.

If anyone on here has and ideas in how we can thank him please post them or send me a pm.


Title: Re: Reece goes away for Christmas. Again.
Post by: amcgrath1uk on December 07, 2008, 12:59:58 PM
Invite him to the next Blonde bash.. I'm sure there will be many people wishing to thank him!


Title: Re: Reece goes away for Christmas. Again.
Post by: mondatoo on December 07, 2008, 01:06:55 PM
Great news, hope it goes ok


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on December 07, 2008, 01:49:16 PM
Invite him to the next Blonde bash.. I'm sure there will be many people wishing to thank him!

+1  Would love to meet the man who has stood by Reece and thank him personally.  I'm sure we can come up with some sort of 'proper' tribute, but will have to think on that for a bit.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on December 07, 2008, 02:05:29 PM
That would be hard to time it right, this is no ordinary Doc, he is so committed to his work.


Title: Re: Reece goes away for Christmas. Again.
Post by: Graham C on December 07, 2008, 02:05:59 PM
Great news, hope it goes ok


Title: Re: Reece goes away for Christmas. Again.
Post by: boldie on December 07, 2008, 03:38:38 PM
Two major events this week.

This Thursday the 11Th December 2008 Reece will reach the grand age of 4.
This Wednesday the 10Th December 2008 Reece will be going into hospital to drop his final night of machines. He is only on them one night a week now for the usual 12 hours. If he doesn't start to lose too much weight, he is a little on the thin side, this will mean that together, Reece and Antonino have successfully battled against the odds and proved many others wrong. Stacey said this week however did we manage doing TPN 7nights a week along with all his other cares like stretching his bowel, my answer was however did Reece manage. We would gladly do it all again for he is so worth it. Once it is proved that Reece is absorbing and eating enough then the last surgical procedure will take place. Removal of his central line, his life line as was. This will be a joyous day for us but may have a psychological effects for Reece as he has had in total 14 lines in total and he thinks it is part of him as it is like an arm or leg to him, he has never known any different. That will be the time when we can take him into a swimming pool and he can splash and play like any other child. He will also have to have his gastrostomy removed.


Fingers crossed.

Amazing..


Title: Re: Reece goes away for Christmas. Again.
Post by: Indestructable on December 07, 2008, 05:23:21 PM
Good luck Reece.
 :)up


Title: Re: Reece goes away for Christmas. Again.
Post by: pokerram on December 07, 2008, 05:40:27 PM
good luck reece m8


Title: Re: Reece goes away for Christmas. Again.
Post by: technolog on December 07, 2008, 06:54:41 PM
I'm so pleased for you all Maureen - hope you have a great Christmas together.


Title: Re: Reece goes away for Christmas. Again.
Post by: Wardonkey on December 07, 2008, 06:59:05 PM
Good luck! x


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on December 07, 2008, 08:53:31 PM
Great news,and here's wishing you  all the best christmas xxxxxxx


Title: Re: Reece goes away for Christmas. Again.
Post by: redimp on December 07, 2008, 09:01:17 PM
Hope things go well for you all
xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on December 07, 2008, 09:02:59 PM
Fantastic news, go Reece.


Title: Re: Reece goes away for Christmas. Again.
Post by: Snatiramas on December 07, 2008, 09:03:18 PM
Unbelievable........such good news....love and support to all of youxxxx


Title: Re: Reece goes away for Christmas. Again.
Post by: Tonji on December 07, 2008, 09:15:04 PM
Tremendous news, Good Luck.  :)up


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on December 10, 2008, 06:55:39 PM
After much discussion and a few points to take into account :

a, Reece weighed in last night at 12.4 but this am at 12 k

b, It is his birthday tomorrow and were he not have TPN tonight he would have had to stay in hossy and we don't want him to wake up in there on his birthday.

C, He is very slim to say the least.


It has been decided that for the next week or maybe more he will have TPN one night a week. Antonino is not too concerned with him, he Say's that although he has lost he does not look  " hospital grey " or drawn. He also thinks we can get him to gain weight. He will be staying with us for for the next couple of weeks whilst we try and level him out and gain him some weight, grandmas know best see. At least I hope i do. You don't notice his weight loss until bath time or when you pick him up.

Anyway still happy times.


Title: Re: Reece goes away for Christmas. Again.
Post by: phatomch on December 10, 2008, 07:00:04 PM
he's a fighter that kid, all the best to all the family. If you ever need tips on putting on weight feel free to ask Kev or myself we are guru's of pies.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on December 10, 2008, 07:01:05 PM
I don't need tips on weight, have u seen me. lol


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on December 10, 2008, 07:02:18 PM
I am going to be trying different tactics to get him to eat so if any of you have any tips etc please feel free to post.


Title: Re: Reece goes away for Christmas. Again.
Post by: Colchester Kev on December 10, 2008, 07:05:16 PM
I am going to be trying different tactics to get him to eat so if any of you have any tips etc please feel free to post.

Go for the "You are not really allowed to eat this little man, but seeing as no one is looking, have some quick"


OR have him bake cakes or biscuits with you, if he has made them himself he will be itching to eat them


xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on December 10, 2008, 07:08:16 PM
Keep um coming PLEASE....


Title: Re: Reece goes away for Christmas. Again.
Post by: Ginger on December 10, 2008, 07:13:01 PM
The cake cupcake thing was one of the main ones we used on Jen when she was little, more of the mix would end up inside her before they even reached the oven.

Home made milkshakes are packed full of calories, Milk, a couple of bananas and a loads of Cornish ice cream all blended up. Yum!


Title: Re: Reece goes away for Christmas. Again.
Post by: Dingdell on December 10, 2008, 07:18:48 PM
Well if he doesn't put on weight I think we all will - that milkshake sounds delicious!

Good luck Maureen - you'll sweet talk him into it. x


Title: Re: Reece goes away for Christmas. Again.
Post by: phatomch on December 10, 2008, 07:19:13 PM
lager and a vindaloo seem to have done me a treat


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on December 10, 2008, 07:19:40 PM
The hardest thing is getting new things past his lips. He willl not touch potatos in any shape or form, last night i made Dinosaur feet from semi boiled spuds then roated then for max fat content....... nope. He doesn't even like chips.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on December 10, 2008, 07:21:16 PM
Can't believe I'm agreeing with Kev, but reckon Jane really gets the credit anyway.  Having Reece help with the prep and cooking of things will definitely work!


Title: Re: Reece goes away for Christmas. Again.
Post by: Ginger on December 10, 2008, 07:25:33 PM
Can't believe I'm agreeing with Kev, but reckon Jane really gets the credit anyway.  Having Reece help with the prep and cooking of things will definitely work!

Totally agree Laxie, Reece might not know what the food is, but if he's helped prepare it, then half the battle is won.

I'll keep the thinking cap on and see what tricks I can remember. 


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on December 10, 2008, 08:38:20 PM
Keep um on , we tried the prep thing b4


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on December 10, 2008, 08:45:09 PM
does he like guinness?


Title: Re: Reece goes away for Christmas. Again.
Post by: Supernova on December 13, 2008, 11:52:14 PM
Tremendous news, Good Luck.  :)up

Potatoes - I know you will have probably tried everything, but mash with lots of full fat milk/cream and add to gravy for example as a thickener?

xxxx


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on December 25, 2008, 11:48:51 AM

Sad to hear this morning that Reece has had to go into Hossie again. So, that's another Christmas at home missed, for him, & for Mum Stacey, Grandma Maureen & Grandpa Darren. They will now visit him & give him his pressies at 6am on Christmas Day. A young kiddie opening his Pressies on Christmas Day must be the highlight for a family, so this is a bit of a blow, especially now he's old enough (3, I think) to appreciate Christmas.

He has another "line infection", & he'll be OK, apart from missing Crimbo.

But it's worse than that. On the 27th, he was due to go into Hossie for evaluation for his forthcoming & much needed "big op". That will now have to be cancelled. That is really bad news, he needs that Op - he just has to have it.

Our thoughts are always with Reece, Stacey, Maureen & Darren, but especially so right now.

xx

 
That Post above began this thread, exactly 1 year, & 1 day ago, 24th December 2007.

A year on, & this Christmas he is at home, with Maureen & Darren.

He's endured a dozen or more Ops this year, but he had "the big one", to enable him to have a normal life, & came through it with flying colours.

Thanks to Antonio, he's a regular boy now. NO more operations - bar one, to remove his "line" - are scheduled, & the task has begun to somehow get some weight on him.

And Maureen & Darren have made a remarkable discovery. Reece is, to put it mildly, a "fussy eater", he has had to learn to "take food by mouth".

And he has discovered that he loves........boiled eggs, & bacon. And he sits & eats his boiled eggs with great gusto, it's the highlight of his day, every day.

In the scheme of things, that's a miracle.

Merry Christmas Reece. And many more of them.

These pictures were taken this morning.

Some Christmas Story this, eh?

Oh, & Merry Christmas Antonio, too. You the man.


Title: Re: Reece goes away for Christmas. Again.
Post by: booder on December 25, 2008, 11:53:46 AM
Have a great Xmas Reece, so pleased that you are able to spend it at home with your wonderful loving family


Title: Re: Reece goes away for Christmas. Again.
Post by: Snatiramas on December 25, 2008, 12:01:38 PM
Have a great Xmas Reece, so pleased that you are able to spend it at home with your wonderful loving family

+1


Title: Re: Reece goes away for Christmas. Again.
Post by: amcgrath1uk on December 25, 2008, 12:04:46 PM
Have a great Xmas Reece, so pleased that you are able to spend it at home with your wonderful loving family

+1

+2


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on December 25, 2008, 12:05:16 PM
 :)up


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on December 25, 2008, 12:07:19 PM
If I never ever get another Christmas present, this one is still more than enough.

Merry Christmas Reecey boy, and watch out! I like bacon and eggs too....


Title: Re: Reece goes away for Christmas. Again.
Post by: boldie on December 25, 2008, 12:50:20 PM
Have a great Xmas Reece, so pleased that you are able to spend it at home with your wonderful loving family

+1

+2

+3...(well 4 if you count MrsB...)


Title: Re: Reece goes away for Christmas. Again.
Post by: technolog on December 25, 2008, 12:55:21 PM
Brilliant, just brilliant!

Merry Christmas everyone x


Title: Re: Reece goes away for Christmas. Again.
Post by: Dingdell on December 25, 2008, 12:56:20 PM
If I never ever get another Christmas present, this one is still more than enough.

Merry Christmas Reecey boy,

+1. Lovely pics - and something we might not have expected to see this time last year. Wonderful. xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Indestructable on December 25, 2008, 04:08:34 PM
Happy Christmas reece.
 :)up



Title: Re: Reece goes away for Christmas. Again.
Post by: celtic on December 25, 2008, 04:53:35 PM
Brilliant, just brilliant!

Merry Christmas everyone x


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on December 26, 2008, 01:45:27 PM
Thanks all.

Reece has not had TPN since Dec 10th. This means he is surviving all alone, a tad thin and weighing only 12.3 k, but we will get him to gain weight Antonino is confident about that. It is just a miracle that we got to meet Anotnino.


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on December 26, 2008, 03:16:36 PM
Wow the best late xmas present ever.....FACT

wd to all who have made this happen.


Title: Re: Reece goes away for Christmas. Again.
Post by: taximan007 on December 26, 2008, 07:45:42 PM
If I never ever get another Christmas present, this one is still more than enough.

Merry Christmas Reecey boy, and watch out! I like bacon and eggs too....


Title: Re: Reece goes away for Christmas. Again.
Post by: ripple11 on December 26, 2008, 07:53:35 PM

Great news and lovely pictures :)up


Title: Re: Reece goes away for Christmas. Again.
Post by: Robert HM on December 26, 2008, 08:19:31 PM

Great news and lovely pictures :)up

This, big time


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on December 27, 2008, 10:37:11 AM
Wonderful pictures. Happy Christmas to you all. I like my bacon well done BTW.  ;D


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on December 27, 2008, 12:15:06 PM
{{{{{HUGS}}}}}


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on December 27, 2008, 12:24:54 PM
just fantastic!  love and hugs to all of you xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: suzanne on December 28, 2008, 04:26:02 AM
The wee man has come a long way and its fantastic to see him opening his pressies at home after all he has been through.

Hugs and Kisses Reece xoxoxoxoxox


Title: Re: Reece goes away for Christmas. Again.
Post by: Harmony26 on December 28, 2008, 07:47:37 AM
This is great news to hear and it is so lovely to see these photos. 

WD to all, especially young Reece.

Love,

B&H xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on January 29, 2009, 03:14:51 PM
Time for an update I reckon.

I really wish I was writing this full of enthusiasm and optimism but I am not, I actually feel quite worried and anxious again, but then I really should be used to it by now.

Once again the new year seems to have started out as a roller coaster for Reece. He has gradually been losing weight until over the last 2 weeks we have seen him as low as 10.6 k which is not good. At one stage last week when we rushed him in he got to a low point of not even having the strength to sit up and looks so very very thin that all his bones show. He had a bolus infusion of saline over 10 Min's to rehydrate him then when onto intravenous through his central line as his veins are very tiny. This has happened twice over the last 9 days, he dehydrates real quick. His potassium levels are also low which is not uncommon with his condition I understand.

We reintroduced milk feeds which go into his Gastrostomy for 5 hours from 6 while 11pm via a pump, we do them this late so that they hopefully do not interfear with his appetite. He eats a massive breaky but as the day goes on he tends to graze. It is as though he is not absorbing the food or the milk. He still has not had TPN since Dec 10 and it is the last thing we want to go back to. He has been home since Sunday morning and stays with us. I am on earlies this week so Stacey stays on this shift to take care of him in the mornings, this morning when I got up at 4am he was looking drawn again so Darren and Stacey took him over to Antonino to get him checked out. We may have to re think his diet again. He really has got to start putting weight on.

Wish it was more positive folks but there it is.




Title: Re: Reece goes away for Christmas. Again.
Post by: Robert HM on January 29, 2009, 03:17:35 PM
Thanks for the update, sorry it wasn't more rosy. x


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on January 29, 2009, 04:12:32 PM
thoughts are with you all - I do hope a diet can be found soon that suits Reece x


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on January 29, 2009, 05:04:04 PM

That's a big worry Maureen.

On past form, he'll confound everyone & soon resume his recovery.

He will.

x


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on January 29, 2009, 05:15:05 PM
Thanks Tony,

Seems my heads been up my a** again, just caught up on the blonde situ. x


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on January 29, 2009, 05:17:59 PM
Thanks Tony,

Seems my heads been up my a** again, just caught up on the blonde situ. x

You just look after the lad, as you always do, & keep us updated. All things are relative.

blonde will be just fine, so will Reece.


Title: Re: Reece goes away for Christmas. Again.
Post by: pokerram on January 29, 2009, 06:27:00 PM
best wishes with you all . keep ur headfs up and keep battling im sure reece will


Title: Re: Reece goes away for Christmas. Again.
Post by: Dingdell on January 29, 2009, 06:36:08 PM
Maureen you have the best man on the case - that consultant should be knighted imo. And them Reece has you three looking after him. I'm sure he will bounce back, hopefully he just needs to find some other foods that his body finds it easier to digest, he's probably just had enough of one type of food and needs a change.

He's done so well so far, fingers crossed it's just a little bump in the road to recovery. {{{HUGS}}}} xx


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on January 29, 2009, 09:02:59 PM
thoughts and wishes with all of you

he'll soon be back on the upside of thr roller coaster,

he has the whole forum behind him and we cant wait to get his 1st post xx


Title: Re: Reece goes away for Christmas. Again.
Post by: technolog on January 29, 2009, 09:26:54 PM
{{{HUGS}}}} xx


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on January 30, 2009, 05:41:07 PM
I'm just convinced that he will be OK Maureen. This is just a little set back.

Chin up. xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on January 30, 2009, 05:46:34 PM
xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on February 03, 2009, 02:58:39 PM
Just taken him back into hospital. Dehydrated once again and his food intake is zero. He said to me this morning   I'm never going to get better. That hurt. He has just no go in him at all. Struggling to sit up today but that should get better by this afternoon after his infusion.


Title: Re: Reece goes away for Christmas. Again.
Post by: Robert HM on February 03, 2009, 03:00:41 PM
Ouch. Sorry to hear that Maureen.


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on February 03, 2009, 03:04:40 PM
Just taken him back into hospital. Dehydrated once again and his food intake is zero. He said to me this morning   I'm never going to get better. That hurt. He has just no go in him at all. Struggling to sit up today but that should get better by this afternoon after his infusion.

Gimme a ring when you get a minute Maureen.


Title: Re: Reece goes away for Christmas. Again.
Post by: Wardonkey on February 03, 2009, 03:07:10 PM
xox


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on February 03, 2009, 08:14:53 PM
Ugh.  I'm so sorry he's not well.  Will be thinking of him and wish the wee lad a speedy pick up.  {{{{{HUGS}}}}}  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on February 03, 2009, 08:17:07 PM
fingers crossed for a speedy pick up xx


Title: Re: Reece goes away for Christmas. Again.
Post by: boldie on February 03, 2009, 08:46:31 PM
Very sorry to hear that..especially that he said that..hope he starts getting better soon and that he mentally picks up soon as well.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on February 06, 2009, 07:21:43 PM
Sadly, Reece has continued to be unwell, lose weight, & it's become a very big problem now.

He went to Hossie today, & Antonio took a good look at him. For now he does not what to think, what the problem can be, but something is not right, & he cannot hold weight.

And so the decision, which Maurreen so feared has been made. He goes back on TPN, with immediate effect, 7 nights a week.

It's a big blow, a huge setback, but something had to be done, he just keeps losing weight, & has no energy.

This is just too bad for Reece, Maureen, Stacey, & Darren.

It's time for some blonde Good Vibe Mojos please.

Post a message here please, Reece needs your good wishes. Now.


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on February 06, 2009, 07:24:19 PM
best wishes and lots of good vibes for Reece.

thinking of you all xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Colchester Kev on February 06, 2009, 07:26:16 PM
Best wishes little man xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Dingdell on February 06, 2009, 07:29:54 PM
Every good thought and best wish goes over to you Maureen xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on February 06, 2009, 07:30:18 PM
Rooting for you Reecy boy.


Title: Re: Reece goes away for Christmas. Again.
Post by: ripple11 on February 06, 2009, 07:33:13 PM

 Best wishes and every little bit of luck going.


Title: Re: Reece goes away for Christmas. Again.
Post by: relaedgc on February 06, 2009, 07:39:00 PM
Keep fighting, son.


Title: Re: Reece goes away for Christmas. Again.
Post by: DUNK619 on February 06, 2009, 07:39:52 PM
best wishes as always


Title: Re: Reece goes away for Christmas. Again.
Post by: maccol on February 06, 2009, 07:42:49 PM
Best wishes t


Title: Re: Reece goes away for Christmas. Again.
Post by: AndrewT on February 06, 2009, 08:40:31 PM
Sorry to hear he's taken a turn for the worse - he was doing so well.

He has continually shown he is a fighter though - I'm sure he'll get through this.


Title: Re: Reece goes away for Christmas. Again.
Post by: TightEnd on February 06, 2009, 08:42:42 PM
All the best Reece. Thinking of you


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on February 06, 2009, 08:44:34 PM
{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}  Thinking of you wee man.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: sofa----king on February 06, 2009, 08:51:19 PM
just read this,i didnt realise he was unwell again.,.,.,.,.
c'mon MR MUSCLE.,.,.,.,show your gran how strong you are.,.,.,.,
all our good vibes sent and hope he is well soon,.,.,must be very hard for you mo..,,,.,
keep grinding away.,.,he's a little fighter.,.,.,.,x x x  x .,.,xx x  x x x


Title: Re: Reece goes away for Christmas. Again.
Post by: Tonji on February 06, 2009, 09:08:00 PM
All the best, positive thoughts. xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: Chili on February 06, 2009, 09:57:23 PM
All the best to you all and all the luck in the world little Reece xx


Title: Re: Reece goes away for Christmas. Again.
Post by: HOLDorFOLD on February 06, 2009, 10:56:30 PM
Hugs and thoughts with you all.   Stay strong

xxxx


Title: Re: Reece goes away for Christmas. Again.
Post by: LLevan on February 06, 2009, 11:31:36 PM
All the best little man........keep fighting till you see the light at the end of the tunnel...........get well soon.


Title: Re: Reece goes away for Christmas. Again.
Post by: Karabiner on February 06, 2009, 11:35:28 PM
Hang in there little guy, you can pull through we're all rooting for you.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on February 06, 2009, 11:40:00 PM
Thanks all, means a lot.

Massive mix of emotions can not even describe what it feels like. We just want to see him want to get up and play again and if TPN is the only way forward a the moment then that is what it has to be until he is strong enough to try again. We just hope it doesn't do damage to his livers again.
x


Title: Re: Reece goes away for Christmas. Again.
Post by: technolog on February 06, 2009, 11:46:23 PM
Come on Reece - keep fighting little fella! Maureen, he'll beat this the same as he's beaten everything else that life has thrown at him. Love to you and the family x.


Title: Re: Reece goes away for Christmas. Again.
Post by: Dingdell on February 06, 2009, 11:48:08 PM
At least he has a fallback with the TPN, hopefully it will give him some needed strength and energy and he can come off it pretty sharpish and try again.

He's a real fighter. xx


Title: Re: Reece goes away for Christmas. Again.
Post by: turny on February 07, 2009, 10:28:24 AM
be strong reece my thoughts are with you


Title: Re: Reece goes away for Christmas. Again.
Post by: madasahatstand on February 07, 2009, 07:58:34 PM
Thanks all, means a lot.

Massive mix of emotions can not even describe what it feels like. We just want to see him want to get up and play again and if TPN is the only way forward a the moment then that is what it has to be until he is strong enough to try again. We just hope it doesn't do damage to his livers again.
x

And he will get up and play again. We all know he's a wee fighter!

Have you tried milk thistle to protect his liver while he is on the TPN? It comes in drop form so he might be able to take it? If you've not tried it, ask the doctor what he thinks?

Keep strong and try to have a bit of time for yourself too, so you can recharge your batteries.

xx





Title: Re: Reece goes away for Christmas. Again.
Post by: Wardonkey on February 07, 2009, 08:31:29 PM
Get well soon Reece.

All the best to you all.


Title: Re: Reece goes away for Christmas. Again.
Post by: tantrum on February 07, 2009, 10:49:56 PM
Best wishes to Reece and the family... my thoughts are with you.


Title: Re: Reece goes away for Christmas. Again.
Post by: Indestructable on February 08, 2009, 05:25:20 PM
Same here, good luck Reece.  :)up


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on February 24, 2009, 04:49:13 PM
Reece has been home since last Thursday. He is back on TPN still 7 nights a week which is making his weight go up. He is back to 13.1 k and his eating is slowly improving on his special diet.

His fav past time is Dinosuars and we have been promising him a day out at Doncaster Dome Walking with Dinosaurs which we fulfilled today. He was so excited but it was a massive anti-climax. But hey , we had a bit of fun. He is looking well.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on February 24, 2009, 04:51:41 PM
My picures look great on my laptop but when i post um on here they look a crok of s*. Heel knows what I do wrong.


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on February 24, 2009, 05:03:52 PM
great news!


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on February 24, 2009, 06:06:29 PM

A lovely picture, thanks Maureen.

Is Reece with you, or your Daughter, in that Pic?.....;)


Title: Re: Reece goes away for Christmas. Again.
Post by: phatomch on February 24, 2009, 07:05:08 PM
The boy is a little miracle he always has a smile on his face in these photo's despite what he has been through, keep fighting kid, mo and family xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Robert HM on February 24, 2009, 07:07:10 PM
great news!


Title: Re: Reece goes away for Christmas. Again.
Post by: Harmony26 on March 03, 2009, 10:41:59 PM
We did not know that Reece has been so unwell recently so are very glad to read the latest posts that he is putting weight on again and his appetite is improving.  Saw this lovely pic on facebook and commented on a beautiful photo without realising the latest worries you have been going through.

Take care and know we are wishing you all Well.

B&H


Title: Re: Reece goes away for Christmas. Again.
Post by: sofa----king on March 04, 2009, 06:55:12 AM
keep it up reecey boy.,.,.,.,.,did you see the dinosaur with one eye.,.,.,.,he was a "doyouthinkysaurus".,.,.,.,
that was poor lol.,.,.,.,.,


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on March 14, 2009, 11:32:14 AM
A little update.

Antonino has changed his mind again and has decided to try again at getting him off his TPN. So tonight he will be machine free. One day a week to start with, hopefully this time they wont rush him as much. He has been eating quite well up to yesterday but he does have his off days now and then. He comes back here today to sleep so Grandad and I will hopefully get him interested in nosh again. The problem in the morning is that nursery starts at 9 am and he only comes off his machines at 7.30 / 8am, then it is a mad rush to get him dressed and fed, as he eats very very slowly, do his dressing on his central line then the walk to school is 20 Min's from Stacey's or 20 min drive from here. Hopefully once he is off TPN again it wont be as much of a rush. He sometimes tends to miss the first few minutes of school which is not good  as it is when they all meet and get their name badges etc, so he tendds to feel left out quite a bit really through no fault of his own.

As most of you know Reece goes through a vast amount of nappies which is a massive cost. We were told that when he reached 3 Stacey would be entitled to some help in the cost of them but unfortunately the goal posts moved and it is now 4 when a person is entitled to help. So he had his incontinence test last week and was granted the full allowance, 4 a day. This will help a little, although at the moment he can go through anything up to 15 plus, which is better than it was, it used to be far more. Stacey also tried again for a mobility car, but with Reece's illness being so rare it seems they don't really acknowledge it so she has been refused. Her community nurse said she just can not understand how they can refuse so will make some enquiries. Mad really, but that is that I just wish we were richer and we wouldn't have to ask for assesmen ts at all. BTW this is not a begging post lol, it is just explaining the trials and tribulations.

Reece is back in nursery 5 mornings a week but does not mix too well with the other children, he says they are very babyish, lol bless him, he has had to be with adults so much it is hard for him now. He says he can't understand what they are saying to him so tends to want to play with the teachers instead ( which could be a reflection from instances like that in paragragh 1) as the conversations are more interesting to him lol. He will be moving up to BIG school this year so the nurses are starting to train the teachers how to care for him and his line in preparation for his move. It is important that he is not felt to be different from the other children although it is quite clear that he knows he is. When we take him to play gyms his confidence is very low, he is so scared of hurting  his line area so Darren tends to have to go on everything with him. I can not wait to see him go into a pool or the sea and splash till his hearts content but that will only be if and when he gets his line pulled once he is free from TPN again.

Talking of TPN I have been researching it again as now he is back on it there is a great risk that his Bilarubin levels will rocket and his livers fail again which is what we really do not want to happen. Anyway there is a relatively new alternative to it called Omegavin, it is being used on children in the USA and I have been in touch with some Doc's over there that use it. They told me they have given over 60 thousand infusions of it to kids with no damage to livers. They have also given it to kids with poor livers and it has repaired them. One hospital reports an infant mortality rate dropped from 90% to 0. So I told Antonino about it, he basically said it is not used over here. Back I went to find out if it was and YES it is, in FACT it is used in Great Ormand, Birmingham and a hospital in Manchester the Boston Doc told me. Anyway Antonino has now said IF Reece's livers start to show deterioration he will rethink about the Omegavin. We want it now tbh not when he gets poorly. I think prevention is better than cure. I am not sure if it is the cost or if it is just that it says it is for adults only, the supplier that I have been in touch with said that the prescriber has to go against the label instructions just like they do in the USA and some hossy'd here and give it to children.

A big thankyou to GreekStien, (whom I met last week at DT (http://www.dusktilldawnpoker.com/)D (http://www.dusktilldawnpoker.com/), lovely fella x) for the gifts, they arrived safely this morning, though what the postwomen thought of the addressee,  To Maureen The Nun, I don't know especially when I answered the door in just a towel lol.

I will make the effort to update more often as I am going to start printing it off then when Reece grows up he can read it all, so sometimes it may not be that interesting for some of you but it will keep those of you that have polity asked for more updates informed.


Title: Re: Reece goes away for Christmas. Again.
Post by: Harmony26 on March 14, 2009, 05:05:22 PM
Lots of different aspects to take on board with this post. Thanks for the update. Know we are thinking of you all and wishing Reece, and all of you, better progress, in all areas, than of late. 

Christian & Helen


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on March 14, 2009, 05:10:03 PM
Hi Maureen,

I couldn't remember your name until about 5 minutes after I'd posted the package so I thought Maureen 'TheNun' will do. lol.

Let me know if the titles are ok or there are any Reece would prefer and I'll do my best to send some up every few weeks.

Cos


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on March 22, 2009, 08:41:36 PM
Had a good day with Reece, well I think I can confidentley say best ever morthers day. Nowt special really but I loved it, I got up cooked breaky, tried to make it exciting in order to get the little man to eat, which he did. Very important that he eats more today as he was off TPN last night. He then went out to the garden to find worms, this was a lovely sight as Reece does not always have loads of get up un go, but today he so enjoyed his outside time. We then had dinner and post dinner I received my mothers day cards. .....................Stacey asked Reece what he wanted to say to Grandma..


In Reeces words it said .......I love you more than Dinosaurs....



Title: Re: Reece goes away for Christmas. Again.
Post by: Robert HM on March 22, 2009, 08:50:09 PM
awww sweet


Title: Re: Reece goes away for Christmas. Again.
Post by: Colchester Kev on March 22, 2009, 08:53:13 PM
"In Reeces words it said .......I love you more than Dinosaurs"....

Trust me, thats praise of the highest order from a young lad :)


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on March 22, 2009, 08:55:46 PM
"In Reeces words it said .......I love you more than Dinosaurs"....

Trust me, thats praise of the highest order from a young lad :)

I struggled to keep a dry eye, and I am a hardened woman lol.


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on March 22, 2009, 08:56:46 PM
 ;D


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on March 22, 2009, 09:30:39 PM
N1 and a boys love for dinosaurs is HUGE xx


Title: Re: Reece goes away for Christmas. Again.
Post by: boldie on March 22, 2009, 09:33:04 PM
awww sweet


Title: Re: Reece goes away for Christmas. Again.
Post by: turny on March 22, 2009, 11:43:37 PM


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on March 26, 2009, 10:39:19 PM

Reece has taken up gardening. Great pic, eh?

He's doing "so-so". He has no appetite, but eats to keep Nanna happy. His weight is stable now, but he needs a bit of meat on him, so it's a struggle.

Maurren is hoping to take him to a big Dinasours exhibition soon - he's Dinosaur mad.


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on March 26, 2009, 10:48:16 PM
Nice pic. What an inspiration he is.


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on March 26, 2009, 10:49:06 PM
Nice pic. What an inspiration he is.

good to see the little fella up and about..


Title: Re: Reece goes away for Christmas. Again.
Post by: sofa----king on March 27, 2009, 09:39:40 AM
so glad he's feeling a bit better mo.,.,,,.


Title: Re: Reece goes away for Christmas. Again.
Post by: Harmony26 on March 27, 2009, 10:32:54 PM
Nice pic.

Hope you all enjoy the dinosaur exhibition.

B&H


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on May 16, 2009, 01:46:15 AM
Been thinking of the wee Lad.  How's he getting on lately?


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 16, 2009, 05:47:07 PM
Reece is doing quite well at the moment. When he first returned to TPN 7 nights it was like we had a perfect healthy boy, one so full of life that it was hard to believe how poorly he had been. It must have been a great feeling for him to feel normal for once instead of so lethargic all the time. Anyway we have been enjoying his new found energy so very much. Taking him out walking and to parks etc, it is weird to see him want to walk and run.

He has been doing all that still after dropping down to 5 nights TPN over recent months, this week we dropped his 3rd night, we saw quite a difference in him. He seemed a bit moody and I have to think it must be because he may be feeling a little like he was last time we started to test his ability to do without TPN. I truly hope this is just a short term feeling and not going to get worse as we try and push him for his 4th night off which is in the beginning of July. His weight fluctuates between 14.5 - 15.3kg , which is not great for a 4 year old but is better than it was. His eating is good considering his diet consists of very repetitive foods as he is reluctant to try new ones out. He has to be Gluten, Wheat, Soya and Dairy free, hard to cook a varied diet on such limited foods for a four year old to eat. Mash he loves but I do this with his dairy free butter. Boiled eggs are his favourite but his dietician says we must limit these as they will make him poo more often, I personally can not find any evidence of this, anyone else know if they do or not?.

He attends Nursery 5 mornings a week, this is getting to him a little as the other kids innocently tease him a little, they are only young so not too sure what can be done, I have had a word with they teacher but she reckons not to have seen anything or heard anything. Basically he goes to school in a push chair because it is quite a distance from Stacey's home and he can't walk that far and cope with nursery as well although like I said previously his walking and energy levels have greatly improved but a little slower after no TPN nights. The other kids see him arriving this way and call him a baby, I have been trying to figure a way round this but apart from him walking the last leg of the journey not a lot can be done as the pushchair still needs to be pushed empty. The other problem is that the kids say they don't want him to play in the games as he has to have a rest half way through. these things may be minor to us adults but to a 4 year old they can weigh pretty heavy. We have had to appeal to get him into infant school near to Stacey's home as the one they offered was a long way off and would be very difficult to get him to on time. It takes quite a while to get him off his machines, washed dressed and breaky sorted, it will be a push to get him to the local school never mind the allocated one, we got him in the local one due to the allocated one having stairs and Reece can't handle stairs too confidently, this is possibly due to scar tissue from so much surgery so Physio is being set up for him to see if that helps at all.His assessments show he is very advanced for his age which is good and makes us very proud  of him for not letting his illness get in the way.

He knows what Kev and Chris (Rooky9) has done for him, obv what you have all done for him, and we have told him that it is for a trip to Disney land when he is off his machines. He is now constantly talking about it. I have also  booked him tickets for the Walking with Dinosaurs tour in Sheffield in July, they were over 100 quid just for 2 with booking fee etc so just him and Darren are going to go. That has come out of the money from last years pocket, the money that Chris and Kev raised is not being touched until we get him on holiday as we will need every penny we can muster for that. Talking of which, Antonino aims at getting him completely off by October / November this year but as always I can not build my hopes up as I am so scared of seeing him suffer like he did in January. I wish there was a miracle cure I would give anything I had to make him right, all you parents out there will know the usual prayer that us parents / grandparents say, goes some thing like this. Please God if you are there take my life , my sole but don't make this little fella suffer, make him better and let me suffer instead. I am sure he don't listen up though.

Here are a few recent pictures.


Title: Re: Reece goes away for Christmas. Again.
Post by: boldie on June 16, 2009, 05:50:56 PM
He's a champ, so he is.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 16, 2009, 05:51:53 PM
Trying to resize some more.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on June 16, 2009, 06:09:45 PM

Nice Post Maureen, thank you.

This is a tough one, but I know you know me well enough, so I'm going to say it.

He attends Nursery 5 mornings a week, this is getting to him a little as the other kids innocently tease him a little,

Teasing him is not something you can do much about - but worry not - he'll be OK, kids are incredibly resilient, & Reece especially so.

A little story for you. As a kid between the age of 5 & 12, I had "development issues" - mostly mental, but physical, too. So I know all about being teased, & for that matter, being bullied, too. My parents never knew - I had speech & articulation issues - and anyway, my Step-Mother & Father, in very different ways, contributed to the mental & physical bullying.

So, I endured a good few years of teasing & bullying. And you know what, I found my own way to handle it - kids do, if you leave then to their own devices, & don't wrap them in cotton-wool. Being over-protective of kids is, imo, just laying down problems for their adult life.

By the time I reached adulthood, I had learned how to handle adversity, life bumps & bruises, & I'm a far better man for it.

Now, Reece does need special care, I know, as he's still physically frail, but teasing is mental, not physical, & he's already shown more mental fortitude than most grown men.

Reece will grow up to be one of those guys who can handle life's problems, because he learned how to deal with them whilst young. He absolutely will.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 16, 2009, 06:34:10 PM
Not too sure if this works but this is a link to an album.  http://www.kodakgallery.co.uk/BrowsePhotos.jsp?collid=4171229980233&UV=114380801942_6855129980233


Title: Re: Reece goes away for Christmas. Again.
Post by: Colchester Kev on June 16, 2009, 06:36:46 PM
yup that works  :)up

Who gets to pick up all the toys from the garden ??


Love the one in front of the lappy :D


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 16, 2009, 06:49:02 PM
Me usually Kev, Moved last week so most of them can now be stored in the garage, he loves it, like his own little toy store in there. The hardest part is finding where he puts all the animals and Dinosaurs as he likes to hide them in trees etc and play acts constantly


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on June 16, 2009, 11:07:00 PM
that reminds me, I will send up some more mags tomorrow.

Any titles you like too Maureen?


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 16, 2009, 11:19:54 PM
that reminds me, I will send up some more mags tomorrow.

Any titles you like too Maureen?

Tx, did you like the piccy of him with the mags, that was the one i mentioned to you. I'm OK but tx, just look forward to Reece's TYVM. xx 


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on June 17, 2009, 09:26:47 AM
OK! magazine it is then Mo!


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on June 17, 2009, 10:42:33 AM
Good to see the little fella is up and about  :)up

just a suggestion,
on the school issue have you thought about doing a little social story about reece  and get his teacher to show to the class and get reece to answer any questions they night have,a social story is a little book with pictures and words that you can make yrself showing reece when he is on his machines and in hospital and also when he isnt when he is just being a normal little lad,having pictures that the other children to see and explained to them why reece gets tired might just work?

also on the push chair issue why not get him a little go kart thing with a handle that attaches so he can be pushed and taken off just b4 he gets there so he arrives in style??

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: ripple11 on June 17, 2009, 03:08:19 PM

Great photos :)up

Good to hear he's going to Nursery 5 days a week, although I would have thought the teacher would have make a special effort to look out for any teasing etc.
Like cia says, I think its a good idea to try and get the other kids on his side.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 17, 2009, 03:46:25 PM
Tx for the replies.

Rooky9 also mentioned the push kinda bike thingy, good idea me thinks too. Re: the story we thought about that when I spoke to the teacher but thought at this age it would not be a good idea to pin point it down to Reece as this could make him feel even more different. For now we will ride the waves but look into push-bike handle jobbie.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 19, 2009, 01:13:09 PM
Finally, after appeals and getting a board involved and some help from Antonino explaining to them Reece's condition in more detail Stacey has today been granted a mobility car and some extra money to assist her in his needs. This will help so very much, especially these next few months as we drop his TPN nights, this week, well the last couple of days, he is just dropping asleep all the time, straight in from nursery to bed, it must be a combo of loss of essential nutrients from lack of PN and he also has hay fever, poor lad, as if he don't have enough to cope with. It will make our lives a lot more easier and allow us more time as at the moment with only having one car we do a hell of a lot of milage.


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on June 19, 2009, 01:30:20 PM
Finally, after appeals and getting a board involved and some help from Antonino explaining to them Reece's condition in more detail Stacey has today been granted a mobility car and some extra money to assist her in his needs. This will help so very much, especially these next few months as we drop his TPN nights, this week, well the last couple of days, he is just dropping asleep all the time, straight in from nursery to bed, it must be a combo of loss of essential nutrients from lack of PN and he also has hay fever, poor lad, as if he don't have enough to cope with. It will make our lives a lot more easier and allow us more time as at the moment with only having one car we do a hell of a lot of milage.

Excellent!


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on June 19, 2009, 01:41:53 PM
Finally, after appeals and getting a board involved and some help from Antonino explaining to them Reece's condition in more detail Stacey has today been granted a mobility car and some extra money to assist her in his needs. This will help so very much, especially these next few months as we drop his TPN nights, this week, well the last couple of days, he is just dropping asleep all the time, straight in from nursery to bed, it must be a combo of loss of essential nutrients from lack of PN and he also has hay fever, poor lad, as if he don't have enough to cope with. It will make our lives a lot more easier and allow us more time as at the moment with only having one car we do a hell of a lot of milage.

Not before time. Result!


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on June 19, 2009, 02:05:54 PM
Always a fun time going for what you are entilted to but well done on getting there,hopefully Stacey does claim carers allowance? and does reece qualify for disability living allowance?


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on June 19, 2009, 03:58:14 PM
That's absolutely BRILLIANT news!!! 


Title: Re: Reece goes away for Christmas. Again.
Post by: boldie on June 21, 2009, 07:40:02 PM
That's absolutely BRILLIANT news!!! 


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 25, 2009, 08:15:44 AM
Hay fever is kicking in pretty badly he is not quite himself bit grumpy and lost his appetite which is not too good as this morning his weight was a mere 14.1 which is the lightest he has been in awhile.Hoping it is due to the hay fever and not the 3rd night dropping TPN. Plus saying this he did go on a long walk last night with Daz whilst I was at work. Antonino is away fro 2 weeks holiday so can not ask him for advice. I have decided not to send him into nursery again today, he had yesterday off too, this way he won't be pushing himself too hard. He is on Anti-histamine and Cetirizine but this does not seem to be helping.


Title: Re: Reece goes away for Christmas. Again.
Post by: ripple11 on June 25, 2009, 01:04:29 PM

My wife gets hayfever pretty bad, and pills don'tseem to work.....and so is trying this after reading some good things about it:

http://www.lloydspharmacy.com/wps/portal/products/hayfever/hayfeverreliever


It is cheapest at lloyds....but also available elsewhere...see below. There are reviews on the amazon site to read.
Might be worth a try.....obviously best to check with your specialist first.

http://www.amazon.co.uk/Medinose-45030-Hayfever-Allergy-Treatment/dp/B000BI69UQ


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 26, 2009, 08:38:45 PM
Had to drive over to Manchester today to pick up the med's that Huddersfield will not fund but Reece has to have. They have moved to the new Children's Hospital, it is so nice, all clean and spacious lets just hope it stays that way. One of the nurses showed me around, it is just so very much better for long term patients, much more private. own rooms with private bathrooms, there are some shared wards but they are 4 to a room which is way better that the Victorian standards we are used to. I asked why there were so many single rooms empty, she said they have not got the funding to use them. So there they are with these fantastic facilities but can not use them WTF???


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 26, 2009, 08:43:06 PM

My wife gets hayfever pretty bad, and pills don'tseem to work.....and so is trying this after reading some good things about it:

http://www.lloydspharmacy.com/wps/portal/products/hayfever/hayfeverreliever


It is cheapest at lloyds....but also available elsewhere...see below. There are reviews on the amazon site to read.
Might be worth a try.....obviously best to check with your specialist first.

http://www.amazon.co.uk/Medinose-45030-Hayfever-Allergy-Treatment/dp/B000BI69UQ
Thanks Ripple but  just don't think he would put it up his nose, still might try it though whilst it is on offer. Food time is now a constant battle as he really is going off food. Hopefully just due to Hayfever. I have decided to give him Monday  nights TPN as we do not want his weight to drop any lower. Antonino is back off holiday the Monday after so we can see him on the Tuesday to discuss the way forward.


Title: Re: Reece goes away for Christmas. Again.
Post by: vegaslover on June 28, 2009, 10:06:34 PM
Hi Mo
I'm not sure if this will work with Reece and his appetite, but a few of my friends swear by having a spoonful of locally produced honey daily. The usually do from the start of year though, builds up a tolerance to the strains of hayfeaver. May be worth giving a go, if not now then next year.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 28, 2009, 10:40:58 PM
Will try it, and inject it through his gastrostomy as he does not like honey.


Title: Re: Reece goes away for Christmas. Again.
Post by: StuartHopkin on June 28, 2009, 10:48:39 PM
Hi Mo
I'm not sure if this will work with Reece and his appetite, but a few of my friends swear by having a spoonful of locally produced honey daily. The usually do from the start of year though, builds up a tolerance to the strains of hayfeaver. May be worth giving a go, if not now then next year.

I have heard this works, but cant say ive ever tried it.


Title: Re: Reece goes away for Christmas. Again.
Post by: Eck on June 28, 2009, 11:03:52 PM
Hi Mo
I'm not sure if this will work with Reece and his appetite, but a few of my friends swear by having a spoonful of locally produced honey daily. The usually do from the start of year though, builds up a tolerance to the strains of hayfeaver. May be worth giving a go, if not now then next year.

I have heard this works, but cant say ive ever tried it.

this might help stu

(http://www.geo.uw.edu.pl/GALERIA/BEER/UK/LONDON/london011.gif)



hope everyone is good Mo  :-*


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 29, 2009, 09:12:44 AM
He is eating a little more but not a great lot, wiith his weight dropping to 14.1 but now up to 14.9 this am still going to put him on tonight so that will be 5 nights this week instead of 4, can't afford to let him lose too much weight.

Taking him to Sundown Adventure Land today, he is so excited but keeps saying he can't wait to go to Dinosaur Land. Lets just hope he picks up enough to get shut of this TPN before his livers start to struggle again. Anyway Happy Days today and pictures will follow. BTW his bank account book has been updated and copies sent to both Kivvy and Rooky9, I'll let them tell you how much you guys and gals have given him so far. Thanks all. xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on June 29, 2009, 09:49:49 AM
Have a great day out, look forward to the pictures. X


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 29, 2009, 09:59:58 AM
Change of plane Wheelgate park instead. Thanks Mel. x


Title: Re: Reece goes away for Christmas. Again.
Post by: Colchester Kev on June 30, 2009, 04:58:34 PM
From Rooky9's and my sponsored efforts, the good peole of blonde have raised just shy of £1,700 .. weeeeeeeeeeeeeee

WP everyone, we must get Reece to dinosaur land ....

Who is next for a hosepipe up the wrong 'un !!


Title: Re: Reece goes away for Christmas. Again.
Post by: celtic on June 30, 2009, 05:01:29 PM
From Rooky9's and my sponsored efforts, the good peole of blonde have raised just shy of £1,700 .. weeeeeeeeeeeeeee

WP everyone, we must get Reece to dinosaur land ....

Who is next for a hosepipe up the wrong 'un !!

I vote chompy. After all it wouldn't be the first time he has had a length up there innit!


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 30, 2009, 05:34:38 PM
 ;applause; ;applause; ;applause;
From Rooky9's and my sponsored efforts, the good peole of blonde have raised just shy of £1,700 .. weeeeeeeeeeeeeee

WP everyone, we must get Reece to dinosaur land ....

Who is next for a hosepipe up the wrong 'un !!
;applause; ;applause; ;applause; ;applause; ;applause;


Title: Re: Reece goes away for Christmas. Again.
Post by: Snatiramas on June 30, 2009, 07:07:05 PM
The hot weather would also massively affect health. Looking forward to seeing the pictures....


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 30, 2009, 07:09:27 PM
Left the camera in the med bag and dropped it off at Stacey's, so no piccys today.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 06, 2009, 06:48:48 PM
Hospital check up today with Antonino as he has been on holiday. His dietician was also present, I'm sure she thinks we give him things he can not have and that hurts. Still on a very restricted diet, still got to cut out the eggs..I never knew eggs had either gluten, soya wheat or dairy in them, yet she reckons it is OK for him to have dairy free ice cream that we know contains soya and deffy makes him poo more. Also there are 4 cheeses that he can have, all say on the... label contains cows milk. So bloody confusing. Anyway, bad news, Reece's  line has started to come out, this is so very much what we did not want to happen. He is really short of main veins so will be having a scan to see how many usable veins he has left then another operation to remove it and put a new one in. Not too sure where it will be in his groin this time or his right upper chest until after the scan. This will be his 14th I think or 15th line, so not good at all poor fella he will be hysterical when he has to go under as he understands what is happening very very clearly. If it does not come out by accident before at the earliest Friday he will be going in on Friday or next week, the longer we leave it the better really due to the chance of ruining another main archery.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 06, 2009, 07:54:32 PM
http://www.kodakgallery.co.uk/BrowsePhotos.jsp?collid=2796486290233&UV=57801150071_4840686290233

Piccy's as promise from day out last week. He loved the water and the go carts best, well happy he was.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 06, 2009, 08:58:53 PM
Oh yes, forgot to say we are dropping his night again, so back to 3 off as of tonight. Fingers crossed. not sure with the op coming up whether it is wise but are following Antoninos wishes as he really wants him off TPN and soon.


Title: Re: Reece goes away for Christmas. Again.
Post by: boldie on July 06, 2009, 09:29:12 PM
Very sorry to hear that....Hope he does better soon.


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on July 06, 2009, 10:14:42 PM
Mo can you pm me your address pls, I sent some more magazines but they've come back.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 06, 2009, 10:16:20 PM
Now that is bad as I have paid for 6 months redirected mail. PM on way .x


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 07, 2009, 09:11:27 AM
The line has come out a little more over night so today Reece has to go into hospital. At first the x ray will take place then if the line is too far out to have his TPN he will have the new line tomorrow but if not the latest will be Friday. Here we go again.


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on July 07, 2009, 09:13:06 AM
thoughts and best wishes to all of ya xx


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on July 07, 2009, 09:25:51 AM
Sigh, hope all gets better soon.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on July 07, 2009, 09:36:36 AM
Will be thinking of him.  He's a strong wee Lad, so fingers crossed for a speedy return home.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 07, 2009, 06:15:44 PM
Darren, Stacey and Reeceyboy have been sat in A & E all day today, Reece's line came out completely this am, so no line, it did not bleed back so all is OK as far as that is concerned. As Antonino was in theatre he has only just managed to see him. We are gob smacked by his decision today, it goes some thing like this, he may not have a vein to insert the new line into so therefore it has been decided to send Reece HOME WITHOUT a line in, and be in constant contact with Antonino on his state of health. He wants to give him a go without one in but should Reece falter he will go back on Friday have an ultra sound on his main archery's  and take it from there. So this means Reece is experiencing a drop to 1 nights TPN this week. I do not see how he can do it myself, the poor lad is well suffering as it is. Anyway he is coming here for the next 2 nights as I am on rest days so will try and do our best to maintain his weight. Wish him luck please, this is a massive challenge for Reece, the only reason I think they are sending him home to test him is that with his restricted diet he will get more choice at home than  will be available in there for him.


Title: Re: Reece goes away for Christmas. Again.
Post by: I KNOW IT on July 07, 2009, 06:21:30 PM
Wishing all the best
love and kisses for the little fella xx


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on July 07, 2009, 06:22:17 PM
Good luck to the little fighter


Title: Re: Reece goes away for Christmas. Again.
Post by: ChipRich on July 07, 2009, 07:03:34 PM
Good luck to the little fighter


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on July 07, 2009, 07:05:20 PM

I'm so sorry to hear all this Maureen, & I'm sorry I've not been on thread for a week or more.

Can you contiune to keep us updated, please.

What a battle this Lad is having, & how well he seems to cope with setback after setback.

When he grows up, he'll be a champion at something, because he has all the qualities of a born fighter, & winner.

x


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 07, 2009, 08:02:37 PM
Thanks, he is home now and playing had a good stab at his Tea.


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on July 07, 2009, 08:48:03 PM
Thanks, he is home now and playing had a good stab at his Tea.

that's good to hear.  Will be thinking of Reece this week. xx


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on July 07, 2009, 09:13:19 PM
Thanks, he is home now and playing had a good stab at his Tea.

that's good to hear.  Will be thinking of Reece this week. xx

very much this


Title: Re: Reece goes away for Christmas. Again.
Post by: Rooky9 on July 07, 2009, 09:22:01 PM
Best wishes Maureen, fingers crossed. Pass on a huggle.

X


Title: Re: Reece goes away for Christmas. Again.
Post by: Graham C on July 07, 2009, 09:37:54 PM
Best wishes to you all, thinking of you, especially this week.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 08, 2009, 10:23:06 AM
Antonino called this morning to see how he is and after a little discussion it has been decided that Reece really needs to give this his best shot at not having TPN again, this is due to many factors, Antonino thinks it will be very hard to get another line into him and it is time to go for it so to speak. So there we go, this is the time we have all been dreading but at the same want so very much. Ideally it would have been better to slowly stop the TPN but now the line is out we have no choice. There are only 5 (I think) main veins that can be used before having to enter the chest cavity through the ribs, this is only done in extreme cases so we really want this to work because if Reece has no veins we don't want that to happen to him and like I said this is his 13 or 14th line. This is the longest Reece will have gone without a line as when he has had to have new ones he always went into hospital, had it removed then went on intravenous drips for a day or so until the new line was fitted, also it is the first time we have ever had him home with no line. He still has his gastrostomy in so we may have to try feeds through that if he starts to dehydrate.
 









Title: Re: Reece goes away for Christmas. Again.
Post by: boldie on July 08, 2009, 10:58:49 AM
Crickey...best of luck to him.

All other words fail me, at the moment.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 08, 2009, 09:15:22 PM
Not too sure why but we are having a vomit night tonight, maybe it is the peadiasure that we have introduced into his diet yesterday, lets hope that is all it is. Looking slightly dark and sunken around the eyes which is a sign of dehydration but not too bad and has picked up in the last 30 mins or so, so fingers crossed.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 16, 2009, 02:29:11 PM
Well Reece has been free of TPN for 10 whole nights now. He is still here with us although tonight he wanted to go sleep at his mam's so off he has gone to return tomorrow. His eating has been pretty good up until yesterday when he started to lose his appetite again. He really has to eat or this will just not work. His poo's are still very watery but he is only having around 3 / 4 a day. We are working on his meds, juggling them around, dropping some in hope to hit that fine balance, drawing off excess air from his tummy, giving him dioralyte and some paediasure drinks. It can all get very tense and frustrating at times, you have to really be on the ball all the time. I am pretty bolloxed at the moment as working shifts and not getting much sleep but it will all be worth it if this works. I have this afternoon to myself which as much as I feel guilty saying it, I need it to recharge, although I have so much to catch up on and I want to chill etc, can't do a lot as back in work at at 6am, which ain't a bad start compared to some. His weight today was 14.2, not great but not that bad either. If only his appetite had kept up, maybe a night at his mom's and he will come back ready to try again. At the moment he is getting a little sick of his life being centered around food, we have to change our tactics now he is going off it again and think up new ideas.



Title: Re: Reece goes away for Christmas. Again.
Post by: phatomch on July 16, 2009, 05:11:00 PM
sounds like good news, not selfish needing to re-charge at all.

whats the longest he's been off tpn? is 10 days a good run I don't want to bok it but it seems a good start.

keep fighting kid :)


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on July 18, 2009, 04:06:24 PM

Have a good rest today Maureen, & send my love tro Reece, please.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 18, 2009, 04:45:02 PM
Wasn't a great rest tbh, quite a few calls from Stacey as Reece was not feeling too well and wanted us, he slept for 17 hours, came back to us on Friday as soon as I had finished work and is still here now. It is a little tiring at the mo as I am on a long stint at work where I don't get another rest day till Thursday, incl a 10 1/2 hour shift tomorrow, but go onto lates on Monday so it will be easier for Daz n me to take it in turns to be here. There is definatley a massive change in his energy levels, he has gone back to wanting to be carried more and not coping with the stairs, this time 3 weeks or so back he almost ran up them and walked for ages. Food wise, not too good, his appetite has dropped again, his blood results, which took some getting out od his tiny veins showed to be not bad to say he has been off TPN for so long. His potassium and sodium levels are at the lowest end of the margin, so we need to improve them. The plan is to keep giving the dioralyte twice a day but increase the  paediasure drinks up to 4 max in 24 hours so what we are doing is setting the alarm clock in the night and putting one through his gastrostomy whilst he is asleep he can not mange to drink them all. He is suffering with bloatedness (if that's a word) and wind in the latter part of the day, this is due to him eating more than he has ever eaten before, but this is reducing slightly now he is losing his appetite. To try and help this I try and draw back on his gastrostomy occasionally in hope it will get rid of some wind but can not see it working as yet. Anyway not weighed him again yet but will do tonight, Antonino reckons the first 5 days were the biggest worry but I don't quite agree on that one, I just do not want him slowly getting thinner like last time but I also do not want another line in risking infections etc, but have you all noticed how that since we have been with Antonino his line infections reduced greatly?. this has two contributing factors, 1, he is home a lot more so this reduces the ammount of people accessing his line and clinical errors. 2. He insists on putting a quite strong antibiotic down his line once a day along with another solution called Urokinase, look it up on wiki eww.

I know it may sound silly to most of you..well how many people die of this flu that cancer etc etc a day thinkers but I am truly worried shitless that he will catch this bloody Swine flu and not be strong enough to fight it off. He gets bored in the house all the time so when we take him out it is to places like woods, or large areas that are not busy, he missed his leaving party at Nursery on Friday because of me worrying but Antonino says I am doing right and a few of the parents with poorly kids are doing similar. He has fought so hard to get this far when is the lad going to get a break.

Phatomch, there was an attempt to ween him off TPN post his major op to lengthen his small bowel he did not do too well for one reason or another so returned back on it Dec 10th 08 to Feb 6th 09, but that was a lot of time oin hossy as he was quite poorly and very thin indeed. This is the first time we have had him home without a line in and only the second time without TPN. Last time his weight was dropping pretty quick, this time the nutrient drinks have been introduced in hope he can absorb them and they will replace some of the meals which he trys but fails to eat. If the bloating happens too much I just can not get them in him incase he vomits. So it is a first all round really.

Not too sure if I already said but his promised treat is that on the next hot day, which are few n far 'tween in Yorkshire, we are buying him a big paddling pool as this will be the first time in his life that he will be able to get completely wet. Also his Walking with Dinosaur tickets arrived today, he has got good premier seats fro both himself and his Grandad for next Thursday at Sheffield and he is so very excited. Thanks to Blonde members.

xxxx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 18, 2009, 05:01:54 PM
One last thing, if he remains free of TPN we will deffy be looking at the latter part of this year for his holiday so fingers crossed all please.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on July 18, 2009, 05:14:04 PM
One last thing, if he remains free of TPN we will deffy be looking at the latter part of this year for his holiday so fingers crossed all please.

And so say all of us.

Is there enough money in the Holiday Kitty yet?


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 18, 2009, 05:25:05 PM
We are getting there. x


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on July 18, 2009, 09:50:07 PM
Bloody hell Maureen. What a rollercoaster. He's so lucky to have you and Darren in his corner.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 19, 2009, 08:57:53 PM
Been very bloated all day, vomited twice, OK in himself just this awful tummy, gone to A & E in Manchester looks like he has some sort of infection in his gut as his gastrostomy is sore too, I couldn't go as on a long shift at work as was in between stations when I organised him to go in. Hopefully be OK by Thursday to see his much awaited Dinosaur exhibition. he really can not miss that he has waited so long to see it.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 19, 2009, 10:35:03 PM
He is staying in hossy, suspected blockage of the bowel, which I suppose with all the op's he has had on it it stands to reason. Can not be a total blockage as he is still pooing.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 19, 2009, 10:51:12 PM
His weight today. 13.4 kilos


Title: Re: Reece goes away for Christmas. Again.
Post by: vinni on July 19, 2009, 11:18:46 PM
my god mo ,my thoughts are with you and daz ,what a brave little kid .

hope he enjoys it on thursday .


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on July 20, 2009, 08:56:32 PM
(http://i369.photobucket.com/albums/oo133/cia260895/rhys1.jpg)

hope all is well,

he'll soon be up and about again

again your doing a superb job  ;hattip;


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on July 20, 2009, 09:53:14 PM
Sorry to hear of all the ups and downs lately Mo.  Thinking of Reece and you all as always.

Re the worries about the swine flu, I think you're 100% right to keep Reece as protected as you can, I know I would.

Take care xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 21, 2009, 10:36:39 AM
Wow, just looked at that piccy, he looks so bloated on it.

We fetched Reece out of hospital last night and he is again here with us. He is on a strong antibiotic called Metronidazole, I am giving him this every 8 hours on an empty tummy,  this should kill any infection that he may have in his tummy, although he has not had any tests for it but it is suspected that is what is causing the loss of appetite and bloatedness. Also he is having a barium meal tomorrow to see if there is a blockage or not. He looks quite drawn again but has managed to eat his boiled egg and 2 toast, plus asked for a pkt of plain crisps, which he is allowed, and ate them asking for another packet which I have refused. I so want to give them him but hope he will get hungry again ready for lunch. At least he is starting to want to eat a little bit again. I have put in a meal drink into his tummy but do not want him to get too bloated. A little worrying is that he is sniffling a lot today, and feels a little cold, the cold feeling may be due to him losing weight, hope so and not the dreaded flu, I guess I am looking too deep as so scared.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 21, 2009, 10:39:57 AM
Also his Disney CD arrived and he sat watching that last night, you should have seen his face, he is so excited.


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on July 21, 2009, 05:40:37 PM
All the best for the brave little man's speedy recovery. Disney is a great antibiotic.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on July 22, 2009, 12:28:02 AM

x


Title: Re: Reece goes away for Christmas. Again.
Post by: suzanne on July 22, 2009, 12:51:46 AM
Maureen ive got lots of Disney videos that my kids have grown out of, mostly the old classics. Let me know if you think Reece might like any of them and i will post them up to you.

Stay strong x


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 22, 2009, 12:58:11 AM
Tx,

The Disney dvd was the one of the theme parks. He has had a good day all in all. Ate well for me including a good dinner, then I was off to work and he has eaten well for Darren too. Set alarm for 4 am to get his antibiotic into him, then he can not eat or drink after 7 am in prep for his barium meal. That is going to be awful for him. He has had one before but how the hell we will get him to swallow it who knows. He is also quite thirsty at the moment so no drinks will also be a testing time.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on July 22, 2009, 04:51:07 PM

Wonderful news today. Mauereen is a bit pulled out, but I know she won't mind me sharing this Text she sent me.

"Reece has no blockage, so therefore these antibiotics will work. He is getting his appetite back. Also the test showed there is more bowel to operate on if needed in future. Happy Days".

There you go. This lad just fights & fights & fights. It'll always be uphill & into the wind for him, but he'll be alright.

He's an inspiration to us all, & as big a man as any.


Title: Re: Reece goes away for Christmas. Again.
Post by: TightEnd on July 22, 2009, 04:57:02 PM
Excellent news

Lets hope he's good to go to the dinosaurs!


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on July 22, 2009, 05:00:24 PM
weeeeeeee, excellent.


Title: Re: Reece goes away for Christmas. Again.
Post by: DUNK619 on July 22, 2009, 05:02:32 PM
best wishes as always xxxxxxxx


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on July 22, 2009, 05:05:32 PM
great news :)up


Title: Re: Reece goes away for Christmas. Again.
Post by: Snatiramas on July 22, 2009, 05:08:40 PM
Excellent news

Lets hope he's good to go to the dinosaurs!

+1


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on July 22, 2009, 05:13:23 PM
Phew!


Title: Re: Reece goes away for Christmas. Again.
Post by: Karabiner on July 22, 2009, 05:24:30 PM
Excellent news

Lets hope he's good to go to the dinosaurs!

+ another


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on July 22, 2009, 08:58:53 PM
Marvelous news.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on July 22, 2009, 09:18:46 PM
Excellent news

Lets hope he's good to go to the dinosaurs!

+ another

+ 1 more!  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Robert HM on July 22, 2009, 09:24:04 PM
Excellent news

Lets hope he's good to go to the dinosaurs!

+ another

+ 1 more!  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 23, 2009, 10:24:41 AM
Reece swore yesterday.


As he left the barium xray room he said..Thankgod for that I'm bloody starving.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on July 23, 2009, 10:28:20 AM
 rotflmfao  Considering all he's been through, I hope ye let him off this one time. 


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on July 23, 2009, 10:42:25 AM
Reece swore yesterday.


As he left the barium xray room he said..Thankgod for that I'm bloody starving.

Attaboy!


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 23, 2009, 05:12:25 PM
Well he had a sleep this afternoon, woke up looks very drawn and starting to dehydrate, can tell this by sunken and shadowed eyes, but still refused food. Got him dressed to go and bang, vomit everywhere, cleaned him up and sent him on his way after a couple of pictures with tickets (these I will post later Daz has camera), now they have only got to Flockton and he has vomited 900ml into his measure bowl. STILL going though, nothing will stop him.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 23, 2009, 07:45:02 PM
On the break now, just phoned me he is up his tree. Loving it, Darren said he is in his glory. I am upset I am not there to see it.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on July 23, 2009, 07:51:18 PM
I'm sorry you missed it, but so very glad he got to go today. 


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 24, 2009, 07:39:19 PM
He had a fantastic time. If any of you get chance to go and see it on tour go, they both loved every minute of if. Photos have not come out too good but he managed to record off the camera some of it. He was sick on the way home but is in very good spirits today, apart from looking thin, 12.6 this morning, he is no different in himself. Plenty of energy, playing, been out today for a short period to see Spiderman in town. Not ill at all today, on top form.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 24, 2009, 09:15:31 PM
13.5 tonight and had porridge with rice milk for supper.


Title: Re: Reece goes away for Christmas. Again.
Post by: trafficjam on July 24, 2009, 09:37:13 PM
i have been following little Reece's trials for some time now. Pleased to see he had a good day today and lets hope things will improve from here.  Good luck and give Reece hugs and kisses from me, such a brave little boy.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 26, 2009, 10:19:32 PM
Went to Brid today with the little big man, Stacey and Daz, had a nice time so decided to throw caution to the wind and take Reece on his first ever break, mini holiday sort of thing. So took some finding but got a Self catering place ( had to be cause of diet) in Trearddur Bay Wales for 2 nights, tomorrow and Tuesday, looks pretty tidy accommodation, not cheap but it is worth it. Plenty of fresh air and out door fun. Stacey is coming along too so will be good to get away. So excited for him.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 26, 2009, 10:49:20 PM
Weight 13.5 still.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 29, 2009, 07:29:46 PM
Had a decent break away. little fella was not too impressed all he wanted to do was go home, not used to being away I guess. His eating went down hill too and his attitude. Best was we got to spend some time with Dewi, he took us to some beautiful places and me n Daz will be returning very soon. Dewi is so very hospitable, if that's a word, living in a most beautiful place in Wales. Can not wait to return. Photo of Reece in one of  Dewis pressies will be posted as soon as I can get around to it.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 29, 2009, 07:30:26 PM
Weight still 13.5 but eating poor.


Title: Re: Reece goes away for Christmas. Again.
Post by: Colchester Kev on July 29, 2009, 07:32:32 PM
Did Dewi not get the lad on the Guinness ??


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 29, 2009, 07:36:43 PM
No but I thought it may be nutrient good for him till I thought oh no it is alcohol.


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on July 29, 2009, 10:20:48 PM
Lovely to have you here, welcome anytime :)up


Title: Re: Reece goes away for Christmas. Again.
Post by: Rooky9 on July 29, 2009, 10:47:13 PM
Is staying at 13.5 whilst not eating well a good sign? If appetite returns now home it
might push up?


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 30, 2009, 09:31:36 PM
Is staying at 13.5 whilst not eating well a good sign? If appetite returns now home it
might push up?

Well at least it is not dropping. Had a better try at  tea tonight and found some energy to go to a playhouse climbing kids place as there was only 3 in we let him lose.

Dewi, can't wait to return. x


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on August 04, 2009, 12:34:54 AM
Spent the afternoon at the hossy thinking up plans with Antonino. We have decided to give Reece a bash at eating a full range of food, no restrictions to see if this works as he is looking very thin again, his ribs and bones are showing once more. We have nothing to lose by attempting this, if it fails, we try a different enteral feed, if that fails back on TPN to rebuild him up then more surgery to try and lengthen the bowel more. From  intake of liquid to pooing it takes him 1 hour 30 mins, an average person takes 9 hours. We really do not want to put him through that surgery again.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on August 04, 2009, 11:05:54 AM
Spent the afternoon at the hossy thinking up plans with Antonino. We have decided to give Reece a bash at eating a full range of food, no restrictions to see if this works as he is looking very thin again, his ribs and bones are showing once more. We have nothing to lose by attempting this, if it fails, we try a different enteral feed, if that fails back on TPN to rebuild him up then more surgery to try and lengthen the bowel more. From  intake of liquid to pooing it takes him 1 hour 30 mins, an average person takes 9 hours. We really do not want to put him through that surgery again.

Fingers xx'd.

What does Feece think of the idea of being able to eat "anything"?


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on August 04, 2009, 11:10:29 AM
Spent the afternoon at the hossy thinking up plans with Antonino. We have decided to give Reece a bash at eating a full range of food, no restrictions to see if this works as he is looking very thin again, his ribs and bones are showing once more. We have nothing to lose by attempting this, if it fails, we try a different enteral feed, if that fails back on TPN to rebuild him up then more surgery to try and lengthen the bowel more. From  intake of liquid to pooing it takes him 1 hour 30 mins, an average person takes 9 hours. We really do not want to put him through that surgery again.

Fingers xx'd.

What does Feece think of the idea of being able to eat "anything"?

He wanted to go straight to Kentucky, which we obv did.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on August 04, 2009, 11:25:33 AM
Spent the afternoon at the hossy thinking up plans with Antonino. We have decided to give Reece a bash at eating a full range of food, no restrictions to see if this works as he is looking very thin again, his ribs and bones are showing once more. We have nothing to lose by attempting this, if it fails, we try a different enteral feed, if that fails back on TPN to rebuild him up then more surgery to try and lengthen the bowel more. From  intake of liquid to pooing it takes him 1 hour 30 mins, an average person takes 9 hours. We really do not want to put him through that surgery again.

Fingers xx'd.

What does Feece think of the idea of being able to eat "anything"?

He wanted to go straight to Kentucky, which we obv did.

Result!

The things kidz will do to get some KFC. Don't blame him, either, it's the basic food of life.

Seriously, has he shown any medical or physical reaction to "normal" food, & has it bought about an interest in eating more, &/or more often?


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on August 04, 2009, 11:41:54 AM
Not too sure of any increase of eating as only yesterday afternoon that it was decided much against his dieticians approval, but Antonino thinks we need to give it a go, it has never been actually proven that a regular diet causes increased runny stools in Reece but it was thought that that was what was doing it, but now he has been on such a restricted diet,  and still had the watery and frequent stools, we need to give it another go, nothing to lose now.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on August 06, 2009, 06:23:01 PM

How's KFC Boy doing Maureen?


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on August 06, 2009, 08:56:17 PM
Food by mouth in take nil. New milk makes him vomit. Back to paedasure vis gastrostomy over night but vomiting most back up at the moment. Spoke to Antonino tonight and going to see how he goes overnight and maybe the weekend but looking like a new line. No interest in food at all. Got him his first paddling pool spent all afternoon filling it, he had no get up n go to play. Not interested in it at all, just like life itself. Looks bloody awful, thin and drawn weight. 12.9.


Struggling. Going to bed now to start again tomorrow. Well set alarm to do feed.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on August 06, 2009, 09:21:24 PM
Food by mouth in take nil. New milk makes him vomit. Back to paedasure vis gastrostomy over night but vomiting most back up at the moment. Spoke to Antonino tonight and going to see how he goes overnight and maybe the weekend but looking like a new line. No interest in food at all. Got him his first paddling pool spent all afternoon filling it, he had no get up n go to play. Not interested in it at all, just like life itself. Looks bloody awful, thin and drawn weight. 12.9.


Struggling. Going to bed now to start again tomorrow. Well set alarm to do feed.

Ugh, I'm so sorry to hear that Maureen. Another day, another battle.

Everything is crossed for him.

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on August 07, 2009, 09:39:22 AM

I'm afraid it's been a very bad night, even by Reece's standards.

He was rushed into Huddersfield A & E during the night, then transferred to Halifax, where he has been put on a line, rehydrated, & is now officially "stable". He may be transferred across to Manchester today.

You all know the score here - he has no weight on him, & cannot absorb food or retain it long enough to extract nutrients.

If ever the Reece Fan Club Good Vibes were needed, it's now. Send them in copious amounts.

 


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on August 07, 2009, 09:42:16 AM
Thoughts are with you all Mo.


Title: Re: Reece goes away for Christmas. Again.
Post by: TheChipPrince on August 07, 2009, 09:43:56 AM
Thoughts are with you all Mo.


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on August 07, 2009, 09:49:58 AM

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: littlemissC on August 07, 2009, 09:52:07 AM
lots of love hun to you all xxxxx


Title: Re: Reece goes away for Christmas. Again.
Post by: ripple11 on August 07, 2009, 10:01:31 AM


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on August 07, 2009, 10:03:08 AM
Will be thinking of the wee Lad and hugs to the lot of you.  Fingers crossed he'll get better fast.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Karabiner on August 07, 2009, 10:19:33 AM
XXX


Title: Re: Reece goes away for Christmas. Again.
Post by: Dingdell on August 07, 2009, 10:44:56 AM
Oh god Maureen - I just hope everything will be ok xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on August 07, 2009, 10:49:43 AM
everything crossed for Reece xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: Eck on August 07, 2009, 10:52:01 AM
everything crossed for Reece xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: AndrewT on August 07, 2009, 11:01:42 AM
Will be thinking of the wee Lad and hugs to the lot of you.  Fingers crossed he'll get better fast.  xx

This - he's a little fighter, I'm sure he'll get through this OK.


Title: Re: Reece goes away for Christmas. Again.
Post by: boldie on August 07, 2009, 11:01:49 AM


Title: Re: Reece goes away for Christmas. Again.
Post by: TightEnd on August 07, 2009, 11:38:06 AM
Thinking of you all Maureen. Hoping news is better shortly


Title: Re: Reece goes away for Christmas. Again.
Post by: HOLDorFOLD on August 07, 2009, 12:58:59 PM
Love and hugs to you all Mo xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on August 07, 2009, 01:04:20 PM
thoughts are with all of you as well mo xxx

chin up hun


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on August 07, 2009, 01:33:20 PM
I've spoken to Maureen mid-morning, & the news is mixed.

He is MUCH better, the re-hydration is working, & he's speaking again, his eyes are not so sunken, & his head pains - caused by constant vomiting & dehydration, it's assumed - are much better.

He is in an isolation ward, not because he is contagious, but to protect him from infection by others. and therein lies the problem. His current crisis appears to have been caused by yet another infection he has somehow picked up.

He is prone to infection, as his immune system is poor, at best, so if anything is going round, he will get it, & as he does not absorb nutrients & vitamins from his food (it is only within him for 60 to 90 minutes, even when he eats), it's a vicious circle.

Anyway, the rehydration - medically, very simple to treat - has gone well -  but that still leaves his long-term problem to be addressed.

On Wednesday, his weight was 13.5k, on Thursday it was 12.5k, & this morning, on admittance to Hossie, it was 11.5k. That's the problem - how to stop that trend. I'm not sure how old he is - 3, going on 4? - but that seems very light to me.

Some of that loss would be down to dehydration, vomiting, etc, but he still needs to find a way to first stop the weight loss - Mo says he is "skin & boine" - & then start getting weight back on.

There you go, you know as much as me now.

Red is trying to give some moral support to Mo, & I know Maureen really - really - takes strength from your vibes on this thread. So keep them coming, please.



Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on August 07, 2009, 01:45:57 PM
thanks for the update Tony. He's a proper little fighter that young man.


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on August 07, 2009, 01:47:48 PM
Our thoughts and best wishes for Reece's speedy recovery.


Title: Re: Reece goes away for Christmas. Again.
Post by: HOLDorFOLD on August 07, 2009, 02:25:35 PM
thanks for the update Tony. He's a proper little fighter that young man.

+1


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on August 07, 2009, 03:02:20 PM


On Wednesday, his weight was 13.5k, on Thursday it was 12.5k, & this morning, on admittance to Hossie, it was 11.5k. That's the problem - how to stop that trend. I'm not sure how old he is - 3, going on 4? - but that seems very light to me.





Reece is about four and a half years old now Tony, and his weight of 11.5k (when converted into terms that you and I understand) comes out at a little under 1st 12lb


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on August 07, 2009, 03:06:03 PM


On Wednesday, his weight was 13.5k, on Thursday it was 12.5k, & this morning, on admittance to Hossie, it was 11.5k. That's the problem - how to stop that trend. I'm not sure how old he is - 3, going on 4? - but that seems very light to me.





Reece is about four and a half years old now Tony, and his weight of 11.5k (when converted into terms that you and I understand) comes out at a little under 1st 12lb
Thanks Tom.

So, in language I understand, he is less than 2 stone? Goodness me, let's hope the answer is found quickly. I have no idea of what a child should weigh at 4.5 years old, but that seems very light.


Title: Re: Reece goes away for Christmas. Again.
Post by: DTD-ACES on August 07, 2009, 03:36:36 PM
Our everyday problems pale into insignificance when you read this thread.

My thoughts are with Reece and your family .

Love

Simon


Title: Re: Reece goes away for Christmas. Again.
Post by: Redbull on August 07, 2009, 04:10:59 PM
Best wishes Mo. Thoughts are with you all.


Title: Re: Reece goes away for Christmas. Again.
Post by: DUNK619 on August 07, 2009, 04:20:08 PM
best wishes as alwaysxxxx


Title: Re: Reece goes away for Christmas. Again.
Post by: maccol on August 07, 2009, 05:54:18 PM
Best wishes Mo. Thoughts are with you all.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on August 07, 2009, 06:01:44 PM
We are still at hossy, Reece is still on the drip and nil by mouth. He has picked up immensly, it is quite unbeliveable the difference in him since thismorning he is actually asking for food. Unnless you saw him for yourself you really could not belive how thin he looked in such a short time to ho he llooks now. Darren is sleeping tonight and I am off home once they are settled.    Many Many thanks to you all for the support, very emotional 24 hours and very stressful time all round but the support I get off alll your vibe is gratefully appretiated. Excuse spelling as on mobile and can't be arsed to reread it or spell check.    Xxxxx


Title: Re: Reece goes away for Christmas. Again.
Post by: Colchester Kev on August 07, 2009, 06:03:06 PM
That lad is just bloody amazing ... he is my hero, and you can tell him that !!

Anything you need mo, just shout.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on August 07, 2009, 06:10:03 PM
That lad is just bloody amazing ... he is my hero, and you can tell him that !!

Anything you need mo, just shout.

And he speaks for us all Mo. Thanks for the Update.


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on August 07, 2009, 06:12:18 PM
great news Mo! Hope he stays on the up.


Title: Re: Reece goes away for Christmas. Again.
Post by: trafficjam on August 08, 2009, 12:07:56 AM
Our everyday problems pale into insignificance when you read this thread.

My thoughts are with Reece and your family .

Love

Simon


Agree  -  Thoughts are with you  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Dingdell on August 08, 2009, 07:55:04 AM
Great news - what can be done to help avoid this again in the future if anything? Is it something in the drip that gives him something he needs but won't/can't take on by himself?

Fingers crossed he keeps felling better x


Title: Re: Reece goes away for Christmas. Again.
Post by: kinboshi on August 08, 2009, 08:55:59 AM
That lad is just bloody amazing ... he is my hero, and you can tell him that !!

Anything you need mo, just shout.

This.

Thinking of all of you today.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on August 08, 2009, 11:15:21 AM

I had a text from Mo late last night, basically, Reece is 100% improved. He's aware of what's happening, being cheeky to the Nurses, though the canula (sp?) in his arm hurts, as there's very little flesh for it to "stick into".



Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on August 08, 2009, 11:23:15 AM

I spoke to Maureen at about 10am today.

Reece has had a very good night, & the rehydration process has been successfully completed.

His weight has bounced back, too - 13.3k. So the weight progression over 4 days is 14.5k, 13.5k, 12.5, 13.3k.

His appetite is back, too - he had 4 rounds of toast this morning - almost unheard of, & he's boucing off the walls again.

Stool tests have been taken - he passed his first stool for several days today - but the results of these take 14 days to come through.

So it looks like an infection arose, & he got dehydrated. In fact, they HOPE he got an infection, otherwise, why the rapid dehydration?

He really was in a very bad way - dehydration can be extremely serious, extremely quickly - but once again, cometh the hour, cometh the man, & Reece has amazed us all with a rapid reecovery.

Never underestimate what a perilous existence that boy endures - or his ability to keep bouncing back.

Maureen wants you all to know that every single one of your Messages mean a great deal. Please keep them coming.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on August 08, 2009, 11:26:18 AM

And amazingly, news has now come through from Mo that Reece will be allowed home today.

Mo has gone home, collected his Dinosaurs & is whizzing back to Halifax to get him now. Darren spent the night at the Hossie with Reece.

May they all have a peaceful weekend.


Title: Re: Reece goes away for Christmas. Again.
Post by: boldie on August 08, 2009, 11:53:54 AM
Amazing, what a kid man he is.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on August 08, 2009, 12:11:30 PM
Day is made now.  Sooooo glad he recovered as fast as he did and thanks to Mo and Tikay for keeping us updated.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Karabiner on August 08, 2009, 12:17:16 PM
Great news Maureen, let's hope he continues to pile on the kilos.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on August 08, 2009, 01:26:34 PM
He is having a sleep now, well they both are, he aint great but he is hell of a lot better, give him time and lets hope he absorbs more, he just has to. Tracey asked what can be done to stop it happening, well not a lot really, talk of more lengthening which will make the fluids / foods have to travel further before they exit his bowel, but possibly that is all. Obv the restricted diet did not help. First sign of this recurring and we are off back in. Lets hope that it was just a bug and nothing else, he has kept breaky and a light lunch down but has poo'd twice this am which is not unusual for him. Up to 4 / 5 a day is to be expected plus more if he returns to eating more. Great to have him home but I am on lates tonight and really have to go to work, can't risk losing my job. I get tomorrow off so hopefully if all is well we may get a barby goiing, he'll like that.


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on August 08, 2009, 04:31:35 PM
Marvellous just marvellous news. Reece is an absolute superman. X


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on August 09, 2009, 11:34:50 AM

Bounce-backability.

This is our man - today!

A great end to what has not been the best of weeks.

Nice one, Reece.


Title: Re: Reece goes away for Christmas. Again.
Post by: Karabiner on August 09, 2009, 11:45:12 AM
You da man !


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on August 09, 2009, 01:31:18 PM
You da man !

Innit  ;D


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on August 18, 2009, 02:26:28 PM

Reece took poorly over the weekend and we had him admitted to Calderdale hospital. This morning he was transfered to Manchester for tests on his veins to see how many main ones he has that can be used. Tomorow he is being operated on. It is anticipated that it may bee very awkward to insert a new line plus he is not in best of shape. To me or you a new line would be a relativlly simple proceedure but not to Reece with how is is.  He will then return to TPN. Can not descibe how I feel devasted is one feeling worrie and lots of other tension and issues to contend with.  Thanks Tom and Tony for continued support.


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on August 18, 2009, 02:28:37 PM
thoughts and wishes with all of you xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on August 18, 2009, 02:29:58 PM

Oh my, Maureen, that's such a worry.

I was discussing Reece with both Tom & Dewi at the weekend, & we all hoped his latest crisis has been overcome.

The good vibes are in transit. Hope tomorrow goes well.

I guess Reece is very down again, in his mind?


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on August 18, 2009, 02:32:44 PM
I'm so sorry Mo.  Will keep thinking of him and all the family and hope this is just a wee set back.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on August 18, 2009, 03:18:14 PM

Oh my, Maureen, that's such a worry.

I was discussing Reece with both Tom & Dewi at the weekend, & we all hoped his latest crisis has been overcome.

The good vibes are in transit. Hope tomorrow goes well.

I guess Reece is very down again, in his mind?

Very much so. Also saying how he hates this body of his etc..he is worryingly thin too.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on August 18, 2009, 03:25:01 PM

Oh my, Maureen, that's such a worry.

I was discussing Reece with both Tom & Dewi at the weekend, & we all hoped his latest crisis has been overcome.

The good vibes are in transit. Hope tomorrow goes well.

I guess Reece is very down again, in his mind?

Very much so. Also saying how he hates this body of his etc..he is worryingly thin too.

Well let's hope the Hossie get him sorted out.

I do so feel for you all, but he need to keep cheerful, for him - as you know, kids are far more perceptive - & resilient - than most give them credit for.

I'm sure he'll be right as rain in a few days.

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Tonji on August 18, 2009, 03:45:13 PM
Keep positive. Best wishes. xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on August 18, 2009, 04:53:26 PM
So sorry to here of Reece's set back. Best wishes to the little man. X


Title: Re: Reece goes away for Christmas. Again.
Post by: Wardonkey on August 18, 2009, 04:56:54 PM
Hugs and best wishes.


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on August 18, 2009, 04:58:39 PM
thinking of you all xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on August 18, 2009, 08:54:19 PM
Results say 2 veins left in groin. Not great, but not worst case sinario/ wishing for an answer..


Title: Re: Reece goes away for Christmas. Again.
Post by: boldie on August 18, 2009, 09:04:40 PM
Hugs and best wishes.


Title: Re: Reece goes away for Christmas. Again.
Post by: DUNK619 on August 18, 2009, 09:39:35 PM
best wishes to the little fellaxxxxxxxxxx


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on August 20, 2009, 09:04:47 AM

Reece had his operation yesterday.

I was out last night, but had 2 Texts from Maureen, whicxh I'm sure she won't mind me sharimg.

"Just out of theatre, and still in recovery. They have put it in his arm first time for us in his arm."

I assume that refers to his new "line".

In response to my subsequent "how is he now?", Mo then replied......

"Not allowed to see him yet but the op went quicker & better than expected. At least we still have 2 veins left, but he said all over, his veins are not great".

All very stressful, for everyone.

Chin up Maureen, & xx to Reece.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on August 20, 2009, 12:28:15 PM
He has a full on appetite today. Line is in his arm which will save the groin veins for later. We were not told until post op that this was an option, maybe he wanted to try it first, but he did come to us before bringing Reece around to make sure we were ok with it being there. Anything to save his main veins. Antonino is reluctant to restart TPN just yet, but goes away for a break at the weekend so at least the line is there and the TPN is ordered for Tuesday. Stacey is in hossy with him until all being well Saturday and they are trying another brand of enteral feed into his Gastrostomy in hope he wont vomit off this one and maybe absorb some goodness from it. Fingers crossed on that. If he can not come home Saturday Darren is sleeping there as I am back on lates. The new hospital charges £10 for 6 or more hours parking so bloody expensive to visit sick children, with the distance to the hossy it makes out to be an expensive do but he is well worth it but maybe time to start thinking on moving him to Leeds.


Title: Re: Reece goes away for Christmas. Again.
Post by: sofa----king on August 20, 2009, 06:36:41 PM
keep your chin up mo .,,..,he is a little fighter and will be tougher than we all think.,.,.as tony said kids are stronger than what we think...
hope your all keeping well and hope to see you at the cardiff gukpt soon.,.,.,.,.,,.,.,.,x.,.x,.,.x,.mel shouts hi..,.,.,niall funny git shouted low.,.,..,.lol,..,.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on August 21, 2009, 12:12:54 AM
He has a full on appetite today. Line is in his arm which will save the groin veins for later. We were not told until post op that this was an option, maybe he wanted to try it first, but he did come to us before bringing Reece around to make sure we were ok with it being there. Anything to save his main veins. Antonino is reluctant to restart TPN just yet, but goes away for a break at the weekend so at least the line is there and the TPN is ordered for Tuesday. Stacey is in hossy with him until all being well Saturday and they are trying another brand of enteral feed into his Gastrostomy in hope he wont vomit off this one and maybe absorb some goodness from it. Fingers crossed on that. If he can not come home Saturday Darren is sleeping there as I am back on lates. The new hospital charges £10 for 6 or more hours parking so bloody expensive to visit sick children, with the distance to the hossy it makes out to be an expensive do but he is well worth it but maybe time to start thinking on moving him to Leeds.

That Car Park charge is scandalous.

Hope Reece continues his recovery - as he always does.

x


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on August 21, 2009, 12:07:53 PM
That Car Park charge is scandalous.

They charge the hossie staff (Nurses, cleaners etc) the same rate. Bloody ridiculous


All the best Maureen xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on August 21, 2009, 08:02:34 PM
That Car Park charge is scandalous.

They charge the hossie staff (Nurses, cleaners etc) the same rate. Bloody ridiculous


All the best Maureen xx
[/quot

Not sure if they do Tom bth they have a level to themselves with bagdes and rightly so. Anyway Darren has fetched him home on weekend leave until mon.  He is at Staceys tonight but is coming to ours tomorrow.  He is still on enteral feeds via gastrostomy.


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on August 24, 2009, 10:45:41 PM
How's he getting on Mo?


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on August 25, 2009, 09:27:51 AM
He had a nice weekend with us and has now gone back in hossy, his eating wasn't great as we are try a new feed into his gastrostomy but he has startred vomiting again so tonight Reece has to go back on TPN at first we are trying 4 nights to buiild him up as he was 13.6 on Sunday but with the vomits he shot down to 11.7 yesterday. 


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on August 25, 2009, 12:50:11 PM

Yikes, 11.7 must be a worry.

Please try & keep us informed Maureen.

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Karabiner on August 25, 2009, 12:58:43 PM
I do hope he starts putting that weight back on soon Maureen, and then continues to do so.

I really am full of admiration for the little blighter.


Title: Re: Reece goes away for Christmas. Again.
Post by: TheChipPrince on August 25, 2009, 03:16:52 PM
     “If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or Fight Like Hell.”


I think this Lance Armstong quote is very apt for this thread, get well Reece.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on August 26, 2009, 07:22:51 PM
Darren fetched Reece and Stacey home today, he had his first night of TPN last night but  the line in his arm is a struggle as during sleep it constantly sets his machines off due to elbow movement in his sleep causing downstreem pressure. But at least he is home. Still thinking about second opinions.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on August 26, 2009, 07:26:06 PM
    “If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or Fight Like Hell.”


I think this Lance Armstong quote is very apt for this thread, get well Reece.

Nice post xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on August 29, 2009, 06:23:38 PM
Just to let you know Reece is doing fantastic, OK,  so obviously he is back on TPN 4 nights, up to now he has had 3 nights but is thriving on it again, I think 3 nights a week ids ample but the hossy wants 4 so 4 it is. He is full of fun, his humour is back 100 %, wanting to play and walk plus thinking again, and on top of all that he is once again HAPPY. Bloody great to see him like this.


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on August 29, 2009, 06:26:00 PM
great news xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Colchester Kev on August 29, 2009, 06:28:14 PM
top news ... long may it continue xx


Title: Re: Reece goes away for Christmas. Again.
Post by: sofa----king on August 29, 2009, 06:38:46 PM
i love good news..,.keep it up.,.,.,


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on August 29, 2009, 07:21:14 PM
Great news Maureen.

What's his weight now?


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on August 29, 2009, 07:41:48 PM
Great news Maureen.

What's his weight now?

LOL he is watching X factor with his Grandad, and just watched a lass from Tobago sing, he comment as true as I stand here was " She's not that good from the outside , but is very good from the inside " ..

Weight as of now 2 minutes ago to be exact, 13.2. and eating very well indeed, all sorts of stuff he is asking for.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on August 29, 2009, 07:43:16 PM
Just over 2.0786441863175997  stone


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on August 29, 2009, 07:43:23 PM
Great news Maureen.

What's his weight now?

LOL he is watching X factor with his Grandad, and just watched a lass from Tobago sing, he comment as true as I stand here was " She's not that good from the outside , but is very good from the inside " ..

Weight as of now 2 minutes ago to be exact, 13.2. and eating very well indeed, all sorts of stuff he is asking for.

Excellent.


Title: Re: Reece goes away for Christmas. Again.
Post by: Karabiner on August 29, 2009, 08:07:25 PM
Great news


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on August 29, 2009, 08:08:08 PM

Just in - this was today.

Thumbs up to you, too, Reecey-boy!


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on August 29, 2009, 08:09:21 PM

Maureen - is that a protective cover for his "line" on his left arm?



Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on August 29, 2009, 08:18:10 PM

Maureen - is that a protective cover for his "line" on his left arm?



Yes, the plinth, so to speak, may help reduce kinks in the line as his machine alarms are constantly going off due to down stream pressure. I have not yet done his TPN this time as yet, as am on silly shifts and Stacey is coping quite well herself since he came out of hossy on Wednesday.


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on August 29, 2009, 09:21:39 PM
Just over 2.0786441863175997  stone

Pls be more accurate in future thanks mo.

Great news though, long may it continue like this.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on August 29, 2009, 09:51:59 PM
Just over 2.0786441863175997  stone

Pls be more accurate in future thanks mo.

Great news though, long may it continue like this.
lol it was the conversion chart


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on August 30, 2009, 09:52:35 AM
Have to say how fantastic it was to get up this am and see Reece get up himself feeling good. No headache or wearyness, straight into play mode then had his chucky egg runny as he likes it but make sure grandads is hard not runny he says. Ate it all like a ravished lion then wanted antother which had to refuse as work beckoned but now off he has gone to a new woods which he hasn't been to before for an adventure with Darren. Don't forget Grandma, he said , tell Granddad I am the boss today and it is all play.  Lol. Happy days. 


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on August 30, 2009, 01:08:47 PM
 :)up :)up ;applause; ;applause; ;applause; ;applause; ;applause; ;applause; ;sexybanana;

greart news


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on August 30, 2009, 02:55:36 PM
:)up :)up ;applause; ;applause; ;applause; ;applause; ;applause; ;applause; ;sexybanana;

greart news

+1

Brill.


Title: Re: Reece goes away for Christmas. Again.
Post by: ripple11 on August 30, 2009, 03:33:54 PM
:)up :)up ;applause; ;applause; ;applause; ;applause; ;applause; ;applause; ;sexybanana;

greart news
+2


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on August 30, 2009, 05:28:24 PM

GREAT news.


Title: Re: Reece goes away for Christmas. Again.
Post by: TightEnd on August 30, 2009, 05:34:43 PM
Very pleased for you all. xx


Title: Re: Reece goes away for Christmas. Again.
Post by: mondatoo on August 30, 2009, 07:14:18 PM
:)up :)up ;applause; ;applause; ;applause; ;applause; ;applause; ;applause; ;sexybanana;

greart news
+3


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on August 31, 2009, 11:43:46 AM
 ;) x


Title: Re: Reece goes away for Christmas. Again.
Post by: Rooky9 on August 31, 2009, 04:54:05 PM
Yey!


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 04, 2009, 03:03:37 PM
Reece's new teacher called round Staceys this morning to introduce herself and take his photo for the class room. He is so excited, starts next Thursday. The nursing team are teaching her a few basics, what to watch out for etc.  He will not be having any extra help just fitting in like the others, they are going to get him a special water proof cover for his arm so he can enjoy sand and water games.  Thinks he is proper grown up now.  


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on September 04, 2009, 03:24:40 PM
Reece's new teacher called round Staceys this morning to introduce herself and take his photo for the class room. He is so excited, starts next Thursday. The nursing team are teaching her a few basics, what to watch out for etc.  He will not be having any extra help just fitting in like the others, they are going to get him a special water proof cover for his arm so he can enjoy sand and water games.  Thinks he is proper grown up now.  

Awwww!

Who'd have thunk?


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on September 04, 2009, 03:37:14 PM
Wow great news. Go get em Reece.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on September 04, 2009, 03:54:35 PM
Reece's new teacher called round Staceys this morning to introduce herself and take his photo for the class room. He is so excited, starts next Thursday. The nursing team are teaching her a few basics, what to watch out for etc.  He will not be having any extra help just fitting in like the others, they are going to get him a special water proof cover for his arm so he can enjoy sand and water games.  Thinks he is proper grown up now.  

We're going to School.

Who'd have thought?


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on September 04, 2009, 04:20:21 PM
great stuff, is he going in to reception? First day of school piccies please!


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on September 04, 2009, 04:25:07 PM
Wow great news. Go get em Reece.

wooohoooo  :)up


Title: Re: Reece goes away for Christmas. Again.
Post by: boldie on September 04, 2009, 04:54:03 PM
Wow great news. Go get em Reece.

wooohoooo  :)up


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 04, 2009, 08:42:23 PM
Tx all,  there is a comfy chair in the heads room where he will be having a sleep if need be.  We don't anticipate him being able to stay awake all day but who knows he may surprise us. 


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on September 04, 2009, 09:57:31 PM
That's great news!!!  Abso delighted for the wee Lad!  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on September 04, 2009, 10:42:35 PM
Tx all,  there is a comfy chair in the heads room where he will be having a sleep if need be.  We don't anticipate him being able to stay awake all day but who knows he may surprise us. 

couldnt you get them 1 of these?

 http://itemlistings.ebay.com/sdcsrp?fl=360162949526&product={query}&sconstraints=IncludeSelector%3DDetails%2CSellerInfo%26ItemType%3DAllFixedPriceItemTypes%26ItemSort%3DBestMatch&xm&siteid=3  (http://itemlistings.ebay.com/sdcsrp?fl=360162949526&product={query}&sconstraints=IncludeSelector%3DDetails%2CSellerInfo%26ItemType%3DAllFixedPriceItemTypes%26ItemSort%3DBestMatch&xm&siteid=3)


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 04, 2009, 10:55:05 PM
Bit too big for his school bag. X


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on September 04, 2009, 11:31:47 PM
Bit too big for his school bag. X

lol

to keep at his school silly


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 10, 2009, 07:13:19 AM
Up early to go up to Stacey's to get him ready for his big day. Photo's later, that's if he allows us to take some, becoming even more camera shy. Good day to start school too on Tony's birthday, double celebration.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on September 10, 2009, 09:38:51 AM
Up early to go up to Stacey's to get him ready for his big day. Photo's later, that's if he allows us to take some, becoming even more camera shy. Good day to start school too on Tony's birthday, double celebration.

And here is the big Man, on his way to School!

What a wonderful day this is Maureen - he's a proper young man now. I'm thrilled, beyond words. Every battle won.



Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on September 10, 2009, 09:40:42 AM

Sorry the pic is a bit small - if there are any geeky peeps out there who can enlarge it, please go ahead.

I lifted the pic from "Vodafone/getmyphoto", & can give you (via PM) my Password if it will help.

Thanks.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on September 10, 2009, 09:42:46 AM

Attempt # 2...... I "stretched" it on Paint.



Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on September 10, 2009, 09:43:27 AM

Is that his "dinasour" top Mo?


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on September 10, 2009, 09:44:39 AM
Legend....I'll have to send him some older schoolboy mags now now Mo!

good luck.


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on September 10, 2009, 09:49:36 AM
wiiiiiiiiiiiiiiiiiiiiiiiiiiiii  ;applause; ;applause; :)up


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 10, 2009, 09:50:06 AM

Is that his "dinasour" top Mo?

Yes Tony, how bizarre that is the logo lol. Once i figure how to get some more on i will post them.


Title: Re: Reece goes away for Christmas. Again.
Post by: ripple11 on September 10, 2009, 09:50:48 AM

Great photo. :)up


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on September 10, 2009, 09:53:59 AM

Is that his "dinasour" top Mo?

Yes Tony, how bizarre that is the logo lol. Once i figure how to get some more on i will post them.

Just send them to me, as you did this morning - iif it's easier Mo. I'm Office-Based all day today, & I'm a Technogeek. Ish.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 10, 2009, 09:59:29 AM
That was just a quick one to send you whilst we were in car the rest are on my digi camera.


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on September 10, 2009, 10:01:00 AM
Mo does rhys have 1 of those roboraptors? remote controlled dinosaur?


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 10, 2009, 10:02:00 AM
His trousers were way too big for him, he could hardly walk in his new timberland boots that Stacey insisted on him having but he was so proud, he kept smirking in the car, then just as we got there he said " I'm a little nervous about this". lol, he's a bloody star.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 10, 2009, 10:03:00 AM
He had a smallish one but it broke recently. Continuous play no doubt lol.


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on September 10, 2009, 10:05:49 AM
Have just cleaned out thomas' room and he has the big 1 that he doesnt play with amymore its yrs if you want it..


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 10, 2009, 10:08:52 AM
Some try this and see if it works for you please.  

http://www.kodakgallery.co.uk/ViewSlideshow.action?&localeid=en_GB&collidparam=6345977950233.7444876301233.1252573436119


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 10, 2009, 10:09:20 AM
Have just cleaned out thomas' room and he has the big 1 that he doesnt play with amymore its yrs if you want it..

He would love it ty vvm.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on September 10, 2009, 10:12:18 AM
Some try this and see if it works for you please.  

http://www.kodakgallery.co.uk/ViewSlideshow.action?&localeid=en_GB&collidparam=6345977950233.7444876301233.1252573436119

That works!

Lol at the long trousers, & the "thumbs up".

Terrific photos, the best ever of Reece.


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on September 10, 2009, 10:12:50 AM
YVW, if any london based blondes going to the bash wanna pop by (greenford)and collect it you could have it this weekend if not ill have to send it...


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 10, 2009, 10:13:32 AM
She didn't tell me till last night that they needed taking up a little, I had to wonder web them this morning, but still way too long, so off to get him some new ones today.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on September 10, 2009, 10:16:45 AM
She didn't tell me till last night that they needed taking up a little, I had to wonder web them this morning, but still way too long, so off to get him some new ones today.

No - the trousers are fine as they are! Seriously cute, in fact.


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on September 10, 2009, 10:17:31 AM
It's a great milestone Maureen you can be very proud.


Happy tears
(http://fc07.deviantart.com/fs39/f/2008/353/d/c/Happy_Tears_by_GreyFox785.jpg)



Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on September 10, 2009, 10:23:07 AM
Fabulous pics Maureen, I love his "Abbey Road" one.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 10, 2009, 10:23:39 AM
Weird t have my youngest child and her son both going to school in. The same week, Stacey is returning to further her education and get a degree.


Title: Re: Reece goes away for Christmas. Again.
Post by: Karabiner on September 10, 2009, 10:26:01 AM
Happy days, lovely pics.


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on September 10, 2009, 10:37:18 AM
Mo the trousers are awesome! I don't think any schoolkid is meant to have a uniform that actually fits.

I was gonna resist the temptation but I can't...OH HI DER STACEY


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 10, 2009, 10:43:29 AM
Fabulous pics Maureen, I love his "Abbey Road" one.

Me too Tom, me too. Love um all.





Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 10, 2009, 10:49:20 AM
This will sound weird to those that have not had a sick person to look after but I stared rostered annual leave today, along with my rest days and this is the first time in almost 5 years that I will be able to do things for myself without an immense feeling of guilt that I should be doing things for Reeceboy, not as I ever mind being with him in no shape or form, but knowing he is at school, hopefully enjoying himself is an immense feeling.

Today feels good. Off to the gym now which I have not had the chance to use hardly over the last 3 months so have a good day all, I know we will.

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on September 10, 2009, 10:50:20 AM
This will sound weird to those that have not had a sick person to look after but I stared rostered annual leave today, along with my rest days and this is the first time in almost 5 years that I will be able to do things for myself without an immense feeling of guilt that I should be doing things for Reeceboy, not as I ever mind being with him in no shape or form, but knowing he is at school, hopefully enjoying himself is an immense feeling.

Today feels good. Off to the gym now which I have not had the chance to use hardly over the last 3 months so have a good day all, I know we will.

xx

and how well deserved it is ENJOY .......


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 10, 2009, 10:50:41 AM
Mo the trousers are awesome! I don't think any schoolkid is meant to have a uniform that actually fits.

I was gonna resist the temptation but I can't...OH HI DER STACEY

Down boy, you wouldn't handle her. I struggle.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on September 10, 2009, 10:53:40 AM
This will sound weird to those that have not had a sick person to look after but I stared rostered annual leave today, along with my rest days and this is the first time in almost 5 years that I will be able to do things for myself without an immense feeling of guilt that I should be doing things for Reeceboy, not as I ever mind being with him in no shape or form, but knowing he is at school, hopefully enjoying himself is an immense feeling.

Today feels good. Off to the gym now which I have not had the chance to use hardly over the last 3 months so have a good day all, I know we will.

xx

Well don't forget, we want a full report on his first day at School.

And he MUST come home dirty, with his lovely new clothes all scrunged up!


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on September 10, 2009, 12:34:54 PM
very good  ;D


Title: Re: Reece goes away for Christmas. Again.
Post by: Dingdell on September 10, 2009, 01:06:17 PM
I must be having a bad day but I'm in tears here. Lovely lovely photos. I'm such a soppy git.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on September 10, 2009, 01:14:38 PM
I must be having a bad day but I'm in tears here. Lovely lovely photos. I'm such a soppy git.

Not at all Ding - it's affecting everybody the same, judging by PM's & e-Mails I've had.

It's just so lovely - Reece going to school, in his little uniform, with his grown-up long trousers, it's a very moving day.

I can't wait to hear how he got on.


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on September 10, 2009, 01:19:03 PM
fantastic pics Mo - hope Reece has a fab day :)up


Title: Re: Reece goes away for Christmas. Again.
Post by: kinboshi on September 10, 2009, 01:21:35 PM
What a wee dude!!

(http://i219.photobucket.com/albums/cc43/kinboshi/reece.png)


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 10, 2009, 02:37:35 PM
He is home here now for a few hours before going back to Staceys.

Verdict, How was was school then Reece,

Not Good Grandma,

Why?

They make you do lots n lots of work.

Oh well thats good you will learn lots.

No, it's terrible, they never fed me. Only one drink of water, NO BLACKCURRENT, ( said loudly) and only one snack, and you wont belive this Grandma, NO CHICKEN.

Oh Dear!!!

and there are lots n lots of girls.

The school phoned Stacey at 11am to say that on playtime Reece was found on a bench ............................................................................................

















Asleep, in the playground.


LOLOLOL. Short days this week then full time as of next week, dont know how he will cope then.

He is now tucking into Dippy dippy egg and soldiers.






Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on September 10, 2009, 02:40:01 PM


The school phoned Stacey at 11am to say that one playtime Reece was found on a bench ............................................................................................

















Asleep, in the playground


aw bless :) And fantastic to hear he's obviously got his appetite back!


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on September 10, 2009, 02:41:00 PM

!

Sounds like a result to me.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 10, 2009, 02:41:37 PM
Not a great appetite Claw really, the TPN keeps him going, but he does graze.


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on September 10, 2009, 02:48:20 PM
"and there are lots n lots of girls"

Damn girls! They get everywhere eh Reece?

What good are they?


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on September 10, 2009, 02:49:24 PM
Not a great appetite Claw really, the TPN keeps him going, but he does graze.

aw, well good that he's showing an interest at least.

I wonder how long til he has a llittle girlfriend? :D


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 10, 2009, 02:50:58 PM
Just said his teacher is very bossy, oh and he's pulled already, but can not remember her name. Typical man.


Title: Re: Reece goes away for Christmas. Again.
Post by: kinboshi on September 10, 2009, 02:51:59 PM
Just said his teacher is very bossy, oh and he's pulled already, but can not remember her name. Typical man.

Good lad :)up


Title: Re: Reece goes away for Christmas. Again.
Post by: TightEnd on September 10, 2009, 02:52:35 PM
He is home here now for a few hours before going back to Staceys.

Verdict, How was was school then Reece,

Not Good Grandma,

Why?

They make you do lots n lots of work.

Oh well thats good you will learn lots.

No, it's terrible, they never fed me. Only one drink of water, NO BLACKCURRENT, ( said loudly) and only one snack, and you wont belive this Grandma, NO CHICKEN.

Oh Dear!!!

and there are lots n lots of girls.

The school phoned Stacey at 11am to say that on playtime Reece was found on a bench ............................................................................................

















Asleep, in the playground.


LOLOLOL. Short days this week then full time as of next week, dont know how he will cope then.

He is now tucking into Dippy dippy egg and soldiers.






LOL. This is really life affirming stuff.

Mayreen is he joining his normal school year or is he behind a year or two because his problems have kept him off school before now?


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 10, 2009, 02:54:57 PM
Normal year Rich.


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on September 10, 2009, 03:04:19 PM
Awesome, just awesome!


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on September 10, 2009, 03:27:09 PM
Mo have got 2 other walking roaring dinosaurs with wired remote controls i'll give them to Clare if you dont want them just bin em,,

p.s you will need 6 AA batteries and 3 AAA + did look but am all out of spares wanted to try it before it left so fingerss crossed

the off button is under its tail  ;)


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on September 10, 2009, 04:00:47 PM
Mo have got 2 other walking roaring dinosaurs with wired remote controls i'll give them to Clare if you dont want them just bin em,,

p.s you will need 6 AA batteries and 3 AAA + did look but am all out of spares wanted to try it before it left so fingerss crossed

the off button is under its tail  ;)

they're wicked. tempted to test them out msyelf, just to make sure they're ok you understand?


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on September 10, 2009, 04:05:03 PM
Mo have got 2 other walking roaring dinosaurs with wired remote controls i'll give them to Clare if you dont want them just bin em,,

p.s you will need 6 AA batteries and 3 AAA + did look but am all out of spares wanted to try it before it left so fingerss crossed

the off button is under its tail  ;)

they're wicked. tempted to test them out msyelf, just to make sure they're ok you understand?

Oi NO!!!!!!! boys toys are for boys

You should have said you wanted something i could of rounded up a couple of barbie dolls.. ;)


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on September 10, 2009, 04:37:46 PM
What GREAT pictures!!!  He looks so cool in his school clothes.  Proper grown up wee man.  Delighted to hear it went so well.  And he's already pulled?!  Blimey...well done that man! 


Title: Re: Reece goes away for Christmas. Again.
Post by: sofa----king on September 10, 2009, 05:03:31 PM
i am having a real pi55ed off day .,.,this just cheered me right up.,.,and put a lot of things into perspective.,.,.,goooone reecey boy.,.,pull dem birds.,.,


Title: Re: Reece goes away for Christmas. Again.
Post by: mondatoo on September 10, 2009, 05:11:55 PM
Great update, good to hear


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on September 10, 2009, 05:27:47 PM
(http://i369.photobucket.com/albums/oo133/cia260895/rhysdino.jpg)

(http://i369.photobucket.com/albums/oo133/cia260895/dinodragon.jpg)

(http://i369.photobucket.com/albums/oo133/cia260895/roboraptor.jpg)


Title: Re: Reece goes away for Christmas. Again.
Post by: kinboshi on September 10, 2009, 05:30:02 PM
(http://i369.photobucket.com/albums/oo133/cia260895/rhysdino.jpg)

(http://i369.photobucket.com/albums/oo133/cia260895/dinodragon.jpg)

(http://i369.photobucket.com/albums/oo133/cia260895/roboraptor.jpg)

He'll love them Ian. 

Great stuff :)up


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 10, 2009, 05:34:32 PM
He is LOOKIN AT THEM NOW SOOOO EXCITED, he said are really for me, what the hellll, lol....   He also said thank you.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 10, 2009, 05:36:55 PM
reece


The above was typed by Reece , he said now they know where to send them ..lol


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on September 10, 2009, 05:40:56 PM
LOL!!!  Awwww, bless.  Give him a whole bunch of blonde hugs from the lot of us! 


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on September 10, 2009, 05:44:17 PM
reece

Is this his 1st word on blonde?

bless him tell him he's welcome,



Title: Re: Reece goes away for Christmas. Again.
Post by: Colchester Kev on September 10, 2009, 05:54:12 PM
;yippee; ;sark; ;yippee; ;sark; ;yippee; ;sark; ;yippee; ;sark; ;yippee; ;sark; ;yippee; ;sark;


Reece IS the man !

 ;yippee; ;sark; ;yippee; ;sark; ;yippee; ;sark; ;yippee; ;sark; ;yippee; ;sark; ;yippee; ;sark;


Title: Re: Reece goes away for Christmas. Again.
Post by: boldie on September 11, 2009, 03:35:44 PM
;yippee; ;sark; ;yippee; ;sark; ;yippee; ;sark; ;yippee; ;sark; ;yippee; ;sark; ;yippee; ;sark;


Reece IS the man !

 ;yippee; ;sark; ;yippee; ;sark; ;yippee; ;sark; ;yippee; ;sark; ;yippee; ;sark; ;yippee; ;sark;

Very much this!


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on September 12, 2009, 06:36:28 PM
Not been on for a few days and just caught up with Recce's school shinnanagins. Jusy wonderful, bleeding wonderful.


Title: Re: Reece goes away for Christmas. Again.
Post by: The Camel on September 13, 2009, 03:16:15 AM
(http://i369.photobucket.com/albums/oo133/cia260895/rhysdino.jpg)

(http://i369.photobucket.com/albums/oo133/cia260895/dinodragon.jpg)

(http://i369.photobucket.com/albums/oo133/cia260895/roboraptor.jpg)

Jake has got one of these.

I'm weighing uo whther to put in a big bluff and it roars right behind.

Scares me shitless.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 13, 2009, 09:33:51 AM
Will be in ownership of them today. Did you take Jake to the Walking with Dinosaurs tour. Fantastic.


Title: Re: Reece goes away for Christmas. Again.
Post by: Rooky9 on September 13, 2009, 11:27:23 AM
All caught up now Mo! Loving the school logo, great sign, he looks proper smart!

Good luck to him and Stacy with the learning to be done!


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on September 13, 2009, 09:57:54 PM
Did it work?

oh and thoamas has asked for a pic of Reece playing with them

me too  ;)


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 13, 2009, 09:59:05 PM
All caught up now Mo! Loving the school logo, great sign, he looks proper smart!

Good luck to him and Stacy with the learning to be done!

XXXXXXXXXX


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 13, 2009, 09:59:58 PM
Did it work?

oh and thoamas has asked for a pic of Reece playing with them

me too  ;)


Will do,tool late to give them him tonight but promise ASAP will get piccys here T Y VV M


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 15, 2009, 03:20:03 PM
He said Thanks and thumbs up.  Or...http://www.kodakgallery.co.uk/BrowsePhotos.jsp?collid=2997945401233&UV=261623437593_9778845401233&cm_ven=ptnr_kes&cm_cat=Droid&cm_pla=web&cm_ite=uploaded&sourceid=670087587503


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on September 15, 2009, 03:25:11 PM
He said Thanks and thumbs up.

cool  :)up :)up :)up

jees how many dinosaurs does he have?

is his favourite a T Rex?


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 15, 2009, 03:29:19 PM
A LOT and yes T Rex is the nuts.  He has some in the garage too and a load up at his moms. LOL loves um all. xxxx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 16, 2009, 08:01:20 AM
Last night when Stacey took Reece home after us having tea, she went to put him on his TPN and it hurt him when she flushed his line but no swelling. The Vamin ran through OK too but I told her to keep a close eye on his left upper chest area which she did, alas,  later on it started to swell so she got him off the machines and straight to the local hospital. This is a sign that his line has moved and the fluid is not going into his veins correctly. Luckily, after tests during the night it has shown that none has gone onto his lungs but just dispersed, so he was allowed home at 2am but to go to Manchester most likely today or as soon as they have room for him. As long as we do no use the line it will be fine but obv this means that he can not have TPN.  Antonino is still on leave and we can not really afford to wait as yesterday his weight was still only 13.5 kg, but he is eating like a horse at the minute. We do not want his weight to drop, which it will rapidly,  and him start to go off his food again. Also this means the obvious too that more surgery is imminent, like previous lines it was never too much of a big deal but now as we all know his veins are poor and he only has 2 main ones they can use. We anticipated problems using the arm, but thought we were getting there.

Like a fool that I am I have to wonder whether the school making him do push ups yesterday in PE helped at all. But what is done is done so back we go 3 steps again. When will it ever be 3 steps forward and just the one back?.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on September 16, 2009, 09:24:31 AM
{{{{{HUGS}}}}}


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on September 16, 2009, 09:43:15 AM
the 1 thing for sure is the boy has boucebackability (as you all do) xxxxxxxxxxxxxx


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on September 16, 2009, 09:51:29 AM
Thoughts are with you guys and the little big man.


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on September 16, 2009, 10:08:30 AM
hope it goes ok at hossie x


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 16, 2009, 10:12:27 AM
Still at home and waiting for the registrar to get in touch with Antonino who is in Barcelona. As long as he doesn't dehydrate he will be fine at home.


Title: Re: Reece goes away for Christmas. Again.
Post by: Karabiner on September 16, 2009, 11:17:13 AM
xx


Title: Re: Reece goes away for Christmas. Again.
Post by: trafficjam on September 16, 2009, 11:44:27 AM
{{{{{HUGS}}}}}




+ 1


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on September 16, 2009, 11:47:16 AM
FFS!

Chin up Maureen. It will be OK.

XX


Title: Re: Reece goes away for Christmas. Again.
Post by: boldie on September 16, 2009, 11:49:49 AM
FFS!

Chin up Maureen. It will be OK.

XX

+1


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 16, 2009, 12:53:23 PM
Well looks like they are not going to do much at all until Antonino gets back first week of OCTOBER!!!!!. Just maybe a few test. They also want him to continue at school as he needs a normal life. The lads shattered now at school and that is with TPN, hell knows what he will be like next week on Full Time hours.  ;madasahatstand; ;frustrated; ;frustrated; Back to the normal feelings, that was short lived. He is sleeping here tonight so /I shall try and give him as much nosh as I can b4 school tomorrow.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 16, 2009, 02:47:19 PM
This morning I emailed the doctor in Boston that haslimited knowledge of Reece but has emailed me before, to see if it would be worth trying to get him over there, he emailed back saying he would gladly take a look at his case if we can send over all his history and dvds of op's to see if it would be worth the journey.  FFS that would take a cargo ship of its own. When we go to out patients, the notes are wheeled in on trollys just for his only. Plus how the heck do
I go about getting them? This doctor has a massive success rate over there on cases similar to Reece.


Title: Re: Reece goes away for Christmas. Again.
Post by: TightEnd on September 16, 2009, 03:02:50 PM
Maureen, as we talked about at the weekend, can you not get Reece on half day's at school?

Should be quite routine to clear this with the school.


Title: Re: Reece goes away for Christmas. Again.
Post by: Graham C on September 16, 2009, 03:19:31 PM
You are entitled to see medical records, just ask and they should show you them.  Lots of places have computer files so hopefully there's this for Reece's history too. 

http://www.direct.gov.uk/en/HealthAndWellBeing/HealthServices/ManagingYourHealthcare/DG_10036450 May be of some help, but hopefully if you talk to the hospital, it won't be as daunting as it seems at the moment.

Best wishes.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 16, 2009, 04:26:59 PM
Thanks Graham,

I remember way back we tried to get them and they made a big song n dance how long and laborious it would be and that was when there were only about 5 files. x

Anyway, just had this email from a guy called Dan who Dr Kim has spoken to.

Hi Maureen,

My name is Dan, and I work with Dr. Kim and the team in the Center for Advanced Intestinal Rehabilitation.
 
I just wanted to touch base with you and let you know that I contacted the Children's Hospital International Office this morning and started the necessary process to get your grandson to Boston for care.
 
You will be getting an email soon from a member of the International Office, and they will start requesting medical records relevant to Reese and his condition.
 
In the meantime, please let me know if there is anything I can help you with, and I look forward to helping make this process run smoothly for you and your family.
 
Thanks!
-Dan


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 16, 2009, 04:27:56 PM
Obv they don't realise the financial problems we will hit but I have emailed back to explain this.


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on September 16, 2009, 04:33:33 PM
Obv they don't realise the financial problems we will hit but I have emailed back to explain this.

and dont forget the power of Blonde  ;)


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on September 16, 2009, 04:40:27 PM
Obv they don't realise the financial problems we will hit but I have emailed back to explain this.

and dont forget the power of Blonde  ;)

I'd definitely do something to help raise money for this.

Interesting aswell how helpful and nice the American doctor appeared to be in the email and how over here they see helping with his paperwork as a hassle.


Title: Re: Reece goes away for Christmas. Again.
Post by: boldie on September 16, 2009, 04:43:17 PM
Obv they don't realise the financial problems we will hit but I have emailed back to explain this.

and dont forget the power of Blonde  ;)

I'd definitely do something to help raise money for this.

nosejob?


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on September 16, 2009, 04:44:18 PM
Obv they don't realise the financial problems we will hit but I have emailed back to explain this.

and dont forget the power of Blonde  ;)

I'd definitely do something to help raise money for this.

nosejob?

Might flatten yours! x


Title: Re: Reece goes away for Christmas. Again.
Post by: HOLDorFOLD on September 16, 2009, 04:54:54 PM
Obv they don't realise the financial problems we will hit but I have emailed back to explain this.

and dont forget the power of Blonde  ;)

This.     

Reece has touched the hearts of all of us Mo, his spirit is amazing.         

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 16, 2009, 05:00:37 PM
ty,

Looked for that charity number registering thing that you mentioned Holdorfold at the weekend, the only one i saw was it had to be 5k per yr plus to fill in the form. We don't go that much, we just accept what blondes have raised for us various ways, ie donations or Kev's  anal clearance and Rooky9's walk, so not sure if we are allowed to reg. So much to look into so little time.


Title: Re: Reece goes away for Christmas. Again.
Post by: HOLDorFOLD on September 16, 2009, 05:05:31 PM
Will have another ponder then  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 16, 2009, 07:34:56 PM
Been emailed 2forms to fill in but can only save them then cannot find them on my lappy? helppppp


Title: Re: Reece goes away for Christmas. Again.
Post by: Rooky9 on September 16, 2009, 08:02:30 PM
Push ups for any small child surely isn't right!

You never know, in the name of science they may feel not charging still has benefits to them. If the files need sending over I could probably pop over with them, or look into cargo rates!


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 16, 2009, 08:09:05 PM
Rooky9 He's knackered took and early night, I walked onto the park with him but he was having none of it just wanted to go home and get warm so he has taken an early night dribbling on my pillow. Sickend for him to the core. Pepsie Max has nothing on how I'm feeling but I need to get a grip and get on with it again.


Title: Re: Reece goes away for Christmas. Again.
Post by: boldie on September 16, 2009, 08:10:58 PM
The files, you should be able to click "save As" when downloading them..just save them onto your desktop.

Though you probably already know that TBF


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on September 16, 2009, 09:24:44 PM

Ouch, sorry to hear of his setback Maureen.

The note from Dan was interesting. Unbelievable that you would have to wait until October in the UK!

If it comes to funds for America, I'm quite sure the blondes would do whatever they can. There are no problems, only solutions.

x


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 16, 2009, 09:37:03 PM
Got the email too that Dan mentioned, try as i may i cannot open it only save it, along with Bongos assistance I am still no wiser. Tried to open some old files too that have never had a problem with but yet have now. Wondering if I have deleted sommat offa my Lappy that I shouldn't have. oh well need sleep, been a very, to put it mildly, bloody horrible one.


Never defeatist in 5 years, weak at times yes, but for the first time am beginning to feel it and I really do not like it. Off up to bed now to have cuddles with said poorly boy.  It will all look much clearer in the light of day I am sure.


Title: Re: Reece goes away for Christmas. Again.
Post by: Graham C on September 16, 2009, 09:41:22 PM
what type of file is it Mo? I guess Bongo has been though this but thought i'd ask too.


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on September 16, 2009, 10:04:35 PM
hope you manage to get some rest Mo xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on September 16, 2009, 10:17:41 PM
She's managed to send them to me, so we should be ok there.  Have set it up so we can work on them together in the morning as she's wrecked tired after such a crazy day. 

That's one job out of the way on their mountain climb.  Reckon between the lot of us on blonde, there isn't a mountain big enough to hold that wee man back.  Just have to wait until tomorrow to find out what the next steps are.


Title: Re: Reece goes away for Christmas. Again.
Post by: Graham C on September 16, 2009, 11:07:16 PM
You've managed to open them Laxie?


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on September 17, 2009, 08:04:12 AM
Yeah.  Gmail is the bomb.  Not only opened it but have invited Mo to share/edit the doc online with me.  Once it's filled out, we can send it back straight from there. 


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on September 17, 2009, 03:09:55 PM

Hope the lad is a little better today Mo - and you.

x


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on September 17, 2009, 03:10:55 PM

Hope the lad is a little better today Mo - and you.

x

this


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 17, 2009, 03:15:46 PM
Test revealed what we suspected,the line is no longer working, it has split.

After much ado a surgeon over in Manchester has over ruled the decision to await Antoninos return and wants to attempt to put a new line in in the morning. Stacey is anxious but I am confident as this surgeon has operated on Reece before and made me feel very comfortable way back when Reece was quite poorly. Reece was a mere 12.7 this morning even though he is eating shed loads, he just is not absorbing, hopefully once this new line goes in we will be able to give him the dreaded Lipid, ( Lipid is the liver killer and we have not been able to get it to run through the line in Reece's arm as the vein was not big enough so he has just been having the Vamin). So off he goes to use one of the last 2 veins, not good but what choice have we.

I personally feel that although Antonino is a superb surgeon we have come to a brick wall on the after care, IE getting Reece to absorb more. It always seems like as soon as Reece starts to falter they try to say it is something we are doing wrong, this has to be because the op Antonino did on Reece, the Bianchi, is almost frowned upon, so he has to be seen for it to be successful. We cant be messing around like this, we need to find someone that has had success doing bowel lengthening ops on similar cases to Reece. One minute we are told that Reece is the only one at an older age that he has done it on the next oh no he has done it one another of a similar age, some times we don't know our arses from our tits.

Tomorrow Stacey is going to ask for the medical notes that Boston want to see. They will  take a look and see first if they think there is anything at all that can be done then there will be the desision as to whether we go public and try and raise the crazy amount that it will no doubt be. I remember a while back when Reece was really poorly we got introduced to a lady that raised public awareness by way of magazines, tv etc, not sure if it will still be an option now but lots to look into. All I know is we have to try every avenue we can before he is left with no veins. I recall a long time back being told that once Reece is down to his last vein we will need to start looking towards the double transplant again,trust me , we really do not want to go there.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 17, 2009, 03:17:43 PM

Hope the lad is a little better today Mo - and you.

x

A lot better thanks, well a lot stronger than yesterday if that makes sense.


Title: Re: Reece goes away for Christmas. Again.
Post by: mondatoo on September 17, 2009, 03:21:04 PM
Thinking of you all,sure he will be fine he's a very inspirational young man.Take care


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on September 17, 2009, 03:42:17 PM

Hope the lad is a little better today Mo - and you.

x

A lot better thanks, well a lot stronger than yesterday if that makes sense.

Yes, I understand, I think.

So many dilemmas, & you cannot afford to get one wrong. I don't envy you.

Let's not get ahead of ourselves, but if it ends up being a Boston thing, & money is needed, this - blonde - is the place to brainstorm the problem, & see whether we can find some means to raise the cash.

You'll be astonished to know that I've had a bunch of PM's today from different blondes all offering to help with any fund-raising needed. They can do things, or help raise awareness, in both cases with fund-raising as the goal.

I know a few folks who are not regular blondes who would help, too.

So let's hope you can find a result quickly, & at home, but if Boston is the only, or best answer - well don't be giving up on money grounds. Start here, & lets see where it goes.


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on September 17, 2009, 06:53:41 PM
Thoughts are with brave Reece, he's such a strong willed little soldier. X


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 18, 2009, 05:03:18 PM
Ok so today has not gone as planned. On arrival at Manchester hospital Stacey was told oh, we did not know he was coming in. Somewhere along the line communication has broken down, it wont be the first time,far from it in fact. So the hunt then goes on for his results from the tests performed yesterday at Halifax, not arrived it seems, or has the changed plan to operate. So Reece was given food after being starved yet again for no reason, this sure does help his condition. Stacey was then left with no further information as no one , it seems, could get in touch with the Registrar that held the plan. We decided if nothing was being done today he would be far better off at home, so that's it, yet another fk up ( sorry for swearing but am so bloody annoyed). He will once again be starved from midnight tonight with no drinks after 06.30 tomorrow and surgery should take place around midday. As if the lad doesn't go through enough  human error, or is it incompetency? has to add just a little bit more on top.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on September 18, 2009, 05:11:03 PM
Ok so today has not gone as planned. On arrival at Manchester hospital Stacey was told oh, we did not know he was coming in. Somewhere along the line communication has broken down, it wont be the first time,far from it in fact. So the hunt then goes on for his results from the tests performed yesterday at Halifax, not arrived it seems, or has the changed plan to operate. So Reece was given food after being starved yet again for no reason, this sure does help his condition. Stacey was then left with no further information as no one , it seems, could get in touch with the Registrar that held the plan. We decided if nothing was being done today he would be far better off at home, so that's it, yet another fk up ( sorry for swearing but am so bloody annoyed). He will once again be starved from midnight tonight with no drinks after 06.30 tomorrow and surgery should take place around midday. As if the lad doesn't go through enough  human error, or is it incompetency? has to add just a little bit more on top.

Bear up Mo. He'll sense your (very understandable) angst, you know he will.

Good luck tomorrow, too.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on September 18, 2009, 05:22:12 PM
And breeeeeathe.  Hang in there Chicka.  I know today was a pain in the arse, but hopefully tomorrow will run better.  Just try to kick back and relax for tonight as there's only so much you can do and you'll need yer wits about ya tomorrow.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 18, 2009, 05:43:36 PM
Ok so today has not gone as planned. On arrival at Manchester hospital Stacey was told oh, we did not know he was coming in. Somewhere along the line communication has broken down, it wont be the first time,far from it in fact. So the hunt then goes on for his results from the tests performed yesterday at Halifax, not arrived it seems, or has the changed plan to operate. So Reece was given food after being starved yet again for no reason, this sure does help his condition. Stacey was then left with no further information as no one , it seems, could get in touch with the Registrar that held the plan. We decided if nothing was being done today he would be far better off at home, so that's it, yet another fk up ( sorry for swearing but am so bloody annoyed). He will once again be starved from midnight tonight with no drinks after 06.30 tomorrow and surgery should take place around midday. As if the lad doesn't go through enough  human error, or is it incompetency? has to add just a little bit more on top.

Bear up Mo. He'll sense your (very understandable) angst, you know he will.

Good luck tomorrow, too.

He is with his mom tonight so he wont pick up on my vibes at least, but has done in the past if I'm honest, he's a clever little fella. Only thursday gone he told me I look at him with " them eyes" when he wont eat his tea. Oops, I don't think they are angry eyes just omg what am i going to get him to eat tonight sort of eyes.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 19, 2009, 12:48:38 PM
Day 2of starving him in hope he gets a slot. Major case in there now that will be approx 3 hours, then break time then Reece.


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on September 19, 2009, 01:41:27 PM
fingers crossed he gets seen today, and that all goes well xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 19, 2009, 03:31:39 PM
Very. Grumpy, crying for a drink and food and still no sign of going down yet. 


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on September 19, 2009, 03:32:57 PM
Bugger!


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 19, 2009, 04:25:49 PM
If only this was not needed so much I'd have Stacey sign him out. ;frustrated;


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 19, 2009, 06:01:23 PM
I think if I actually wrote down on here how I am feeling I would get a life ban from the forum.

So without the swearing, it has just been cancelled AGAIN. So, no food since before bed last night, no drink since 06.30 this morning, tears and stress all day trying to explain why he can not drink with out telling him the truth as he fully understands all the ins n outs of theatre. His chosen bed tonight, in the middle of us, his wish is granted. still 12.8 today and doesn't appear to be too dehydrated, no chance of it tomorrow, so home till Monday.

I so want to never take him back to that bloody hospital, I just wish it was my decision and not Staceys, but she must do what she feels right, I cannot try and sway her if it all went wrong I would be reet up shit street. She has too much to think about as it is.




Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on September 19, 2009, 06:07:02 PM
Fkn awful I dont know what else to say. xx


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on September 19, 2009, 06:23:08 PM
Poor little guy hope he recovers quickly.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on September 19, 2009, 06:37:41 PM

Sigh.

Good job he has such backbone. And Mo.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on September 19, 2009, 07:40:54 PM
Fkn awful I dont know what else to say. xx

+1    xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 19, 2009, 07:50:21 PM
He is now at the shop with £5 in his pocket ( "only if grandad carries me cause see I have no energy because they starved me again") to spend on anything he wants. Earlyish night tonight then a good walk in the push chair tomorrow for some fresh country air. He is so quickly getting to that ...I dont want to go outside thinking again.

Stacey just said we really need to change hospitals so fingers crossed.


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on September 19, 2009, 08:33:53 PM
what a palava. hope you get something sorted soon xx


Title: Re: Reece goes away for Christmas. Again.
Post by: HOLDorFOLD on September 19, 2009, 08:47:25 PM
xx  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 19, 2009, 08:54:03 PM
Thanks all for the posts and pm's you really don't know how much they mean. xx


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on September 19, 2009, 10:06:13 PM
I am sure that the love and care that you all give him will pull you ALL through this,

this journey is 1 that you have all been on together and you will see it through to the joyous outcome that Reece and all of you deserve,

yes it still will be a long and winding uphill battle but strength in numbers will prevail and you WILL reach the promised land

thoughts and wishes to you all enjoy yr sunday and take every day as the new challenge that it will be xxxx


Title: Re: Reece goes away for Christmas. Again.
Post by: Rooky9 on September 20, 2009, 12:22:05 AM
Will other hospitals in this country be any better? The nhs is a complete shambles with more money being wasted than would be needed to do thousands of operations. Absolute disgrace. 

This will give me some extra grit in tomorrows run.

The day out tomorrow sounds good though. Take care.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 21, 2009, 11:44:51 AM
Will other hospitals in this country be any better? The nhs is a complete shambles with more money being wasted than would be needed to do thousands of operations. Absolute disgrace. 

This will give me some extra grit in tomorrows run.

The day out tomorrow sounds good though. Take care.

Not sure Chris, but cannot be any worse surely.

Anyway, he ate like a horse yesterday but it seems he just isn't absorbing much of it. His weight last night was 13.1, the hospital failed to ring Stacey this morning like they said they were going to so he has gone into school as his community team want him to have as much normality in his life as possible and the school will ring once he gets too tired. Stacey called the hospital and spoke to Carol, Antoninos secretary, Stacey asked for the info Boston need but Carol has not exactly refused it but acknowledged the fact that Stacey is entitled to it but will not release it until Antonino returns as she want him to know first. Carol also said that Antonino would not want one of the surgeons to put the line in as they are not too good at it ????? why the hell are they doing the job then??? so she is going to get in touch with Antonino and seek advice. Whatever, have we not heard this before. The doctors are like bleeding infants there, just bitching on about who is better etc etc, you don't touch my patient, I cant touch yours. Anyway, lets see what today brings. Lets hope someone soon realises they are messing with a childs life here. This takes us back to last year when he was away and things went tits up, no one would touch Reece and he went so thin and ill, we were just left in house hospital waiting whilst Reece looked like a skeleton.



Title: Re: Reece goes away for Christmas. Again.
Post by: Rooky9 on September 21, 2009, 09:58:45 PM
When is the the Doctor due back?


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 21, 2009, 10:02:04 PM
30th, We are in the process of setting up an appointment at Leeds, they are being contacted tomorrow. Reece already has a cold, we can not afford for him to contract anything major when his immune system is low. He has managed his first full day at school, no sleeps either but went to bed very early tonight.

The appointment will be just at first to see what expertise they can offer here.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on September 21, 2009, 10:02:29 PM

Taken today.



Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on September 21, 2009, 10:18:09 PM
X


Title: Re: Reece goes away for Christmas. Again.
Post by: redimp on September 21, 2009, 10:43:14 PM
Thinking about you all
xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 22, 2009, 08:24:56 PM
Another frustrating day, with various attempts at finding out what is happening. Brick wall. Stacey tonight called the ward in Manchester, they could give her no answers apart from telling her she really needs to write a letter of complaint. JOKE. Stacey said never mind a complaint letter I will go to the papers, the nurse did however then  give her the head of nursing mobile no.and told her to ring between 08.30 - 09.00 in the morning as she will be with the registrars and will be able to put them on the spot.

Reece has today had a set back in his eating, not that interested in food towards the end of the day, hope this is not the start of him going off it again which is what usually happens after a period of no TPN.  I am also going to ring the hossy tomorrow and insist on being given a name of who is in charge /making decisions over Reece's care whilst his Doc is away. This isn't a tonsillectomy we are talking about here ffs, what the hell are they playing at?. Also,whilst the old line remains dormant and split in his small veins we can not flush it as it is too dangerous so this could potentially be ruing his arm vein. I am so mad but feel my arms are tied, where the hell are we supposed to go.


Title: Re: Reece goes away for Christmas. Again.
Post by: Harmony26 on September 22, 2009, 10:48:52 PM
Thinking about you all
xx

+2

Really hope that you get some answers and the right support and treatment sap.

Christian & Helen


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on September 22, 2009, 10:51:04 PM
best of luck tomorrow Mo - let's hope either you or Stacey get to speak to someone that can get something done pronto x


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on September 22, 2009, 10:51:58 PM
This is frustrating for me so can't imagine how you guys feel.

Good luck tomorrow.


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on September 23, 2009, 05:39:49 PM
Christ they need a kick up the ass. Best of luck tomorrow, hope you get things moving. X


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on September 23, 2009, 05:53:53 PM
You haven't heard half of it yet. Jesus Christ!


Title: Re: Reece goes away for Christmas. Again.
Post by: Karabiner on September 23, 2009, 06:03:04 PM
Hoping for some positive news here Maureen.

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on September 23, 2009, 06:07:49 PM
You haven't heard half of it yet. Jesus Christ!

Oh FFS!!!  This has gone miles beyond acceptable now.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on September 23, 2009, 06:45:30 PM

Bear up Mo, we are all there with you.

x


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 23, 2009, 06:57:04 PM
Words fail even me today will try n update when I get home.  So many fk ups.   


Title: Re: Reece goes away for Christmas. Again.
Post by: TightEnd on September 23, 2009, 07:01:54 PM
Chin up Maureen. I can't imagine the frustration you all must be feeling.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 23, 2009, 09:45:57 PM
So much happened today it would take me ages to update it correctly and I am sure you just would not believe it. Maybe tomorrow I will get round to it but can not do it tonight.

 Fed him,  after starving him again just after 5pm, but he can not eat once again after 3am. Literally bended knees apology by one nurse but that was just for one of the errors today. His is scheduled for tomorrow morning. Won't hold my breath, but think they are becoming quite aware now that they are really well over the line. Plus the added thought of us going to the press as apparently many other parents have already done so in the Manchester area.

Do you know what Reece said when I got out the cheese butties I had taken in with us for him and sweets, crisps etc, in anticipation of this happenings?. His eyes were like wide open and he honestly said. " This has to be my best day ever, Grandad, have a sweat, I wont starve you take one". How sad is that to refuse a child food then he thinks he has to be grateful for being allowed such an array set out before him.

Please hospital, do not cancel it tomorrow ( or postpone it as no i am wrong,  no operation gets cancelled just merely postponed) as I am not sure I can be held responsible for my actions.

 



Title: Re: Reece goes away for Christmas. Again.
Post by: trafficjam on September 23, 2009, 09:54:13 PM
I really feel for you, what traumas you and your family go through, such a couragious little boy with a big spirit. I do hope all goes well tomorrow.  xx



ps: Nice meeting you at BB8


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on September 23, 2009, 10:02:07 PM
Chin up Maureen. I can't imagine the frustration you all must be feeling.


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on September 23, 2009, 10:16:52 PM
big hugs mo xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 23, 2009, 10:17:24 PM
TYTYTY,


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 23, 2009, 10:21:59 PM
Had Antonino been here it would have been done by now, we were told that today. Also told that no one would dare do this on Reece with his veins being so few unless the big boss, as they put it is present.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on September 23, 2009, 10:52:07 PM

Tomorrow it will be OK Mo. Believe.

x


Title: Re: Reece goes away for Christmas. Again.
Post by: mondatoo on September 23, 2009, 11:21:16 PM
Really hope it gets sorted for you all tmoro


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on September 24, 2009, 08:42:31 AM
here's hoping you have an up day today xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 24, 2009, 02:10:41 PM
Still Nil by mouth, not had any food since last night as his cut off time was 3am. Very grumpy.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on September 24, 2009, 02:14:46 PM
Still Nil by mouth, not had any food since last night as his cut off time was 3am. Very grumpy.

Him, or you?

;)

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 24, 2009, 02:16:29 PM
xx


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on September 24, 2009, 02:18:42 PM
wanns say something but dunno what to say so


xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on September 24, 2009, 02:29:41 PM
Hang in there.  If not, hang the fecker that keeps delaying this.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Graham C on September 24, 2009, 02:35:08 PM
wanns say something but dunno what to say so


xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on September 24, 2009, 02:35:25 PM
XX


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 24, 2009, 02:39:16 PM
Just been told by the  anaesthetist that we should not have been told last night that he was 2nd on the list for the morning, as he is  7th on the list for this afternoon and this guy finishes at 17.30 and he is not sure if Reece will then go on the evening list.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on September 24, 2009, 02:40:11 PM
Sigh.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on September 24, 2009, 02:43:49 PM
Keep chin up xx


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on September 24, 2009, 03:34:24 PM
Just been told by the  anaesthetist that we should not have been told last night that he was 2nd on the list for the morning, as he is  7th on the list for this afternoon and this guy finishes at 17.30 and he is not sure if Reece will then go on the evening list.

Time to draw a line here Maurreen. You are so close to the wood that it must be hard to see the trees.

This is how I see it.

Here's a 4 year old, who struggles to hold his weight at 12 or 13k. He HAS to get food down him, & often. It's the very essence of his problem - food. Lack of food = lack of fuel, energy, & immunity to infection. He is ill. VERY ill.

He's now been deliberately "starved", or food-deprived, something like 3 days in the last 5, or whatever.

Do the Hossie not see the dark irony in this? Because of botched orgsanisation & poor administration, this boy is bottom of the list - again.

He is just sitting there, starving, waiting. For an Op that's being cancelled amost routinely.

Time to get seriously rebellious I think.

Phone the local paper, e-Mail the local MP, demand to see the Hospital Administrator.

This has to stop, right now, it's nothing short of criminal negligence.

If we can help with any of threse things, just say.

We are all onside with you Maureen, & we want to help.

x


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on September 24, 2009, 03:40:41 PM
Just been told by the  anaesthetist that we should not have been told last night that he was 2nd on the list for the morning, as he is  7th on the list for this afternoon and this guy finishes at 17.30 and he is not sure if Reece will then go on the evening list.

Time to draw a line here Maurreen. You are so close to the wood that it must be hard to see the trees.

This is how I see it.

Here's a 4 year old, who struggles to hold his weight at 12 or 13k. He HAS to get food down him, & often. It's the very essence of his problem - food. Lack of food = lack of fuel, energy, & immunity to infection. He is ill. VERY ill.

He's now been deliberately "starved", or food-deprived, something like 3 days in the last 5, or whatever.

Do the Hossie not see the dark irony in this? Because of botched orgsanisation & poor administration, this boy is bottom of the list - again.

He is just sitting there, starving, waiting. For an Op that's being cancelled amost routinely.

Time to get seriously rebellious I think.

Phone the local paper, e-Mail the local MP, demand to see the Hospital Administrator.

This has to stop, right now, it's nothing short of criminal negligence.

If we can help with any of threse things, just say.

We are all onside with you Maureen, & we want to help.

x

Good post Tikay.

Reece is so lucky he has the most caring people around him but its such a disgrace that the hospital treats him like this.

I never complain about paying tax but when it's being used to fund a service as bad as this one I'm ashamed and embarrassed.

Hopefully things get better but maybe it's time to take a different course of action?


Title: Re: Reece goes away for Christmas. Again.
Post by: turny on September 24, 2009, 03:44:06 PM
Just been told by the  anaesthetist that we should not have been told last night that he was 2nd on the list for the morning, as he is  7th on the list for this afternoon and this guy finishes at 17.30 and he is not sure if Reece will then go on the evening list.

Time to draw a line here Maurreen. You are so close to the wood that it must be hard to see the trees.

This is how I see it.

Here's a 4 year old, who struggles to hold his weight at 12 or 13k. He HAS to get food down him, & often. It's the very essence of his problem - food. Lack of food = lack of fuel, energy, & immunity to infection. He is ill. VERY ill.

He's now been deliberately "starved", or food-deprived, something like 3 days in the last 5, or whatever.

Do the Hossie not see the dark irony in this? Because of botched orgsanisation & poor administration, this boy is bottom of the list - again.

He is just sitting there, starving, waiting. For an Op that's being cancelled amost routinely.

Time to get seriously rebellious I think.

Phone the local paper, e-Mail the local MP, demand to see the Hospital Administrator.

This has to stop, right now, it's nothing short of criminal negligence.

If we can help with any of threse things, just say.

We are all onside with you Maureen, & we want to help.

x

Good post Tikay.

Reece is so lucky he has the most caring people around him but its such a disgrace that the hospital treats him like this.

I never complain about paying tax but when it's being used to fund a service as bad as this one I'm ashamed and embarrassed.

Hopefully things get better but maybe it's time to take a different course of action?

great posts guys

best wishes to Reece x


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 24, 2009, 04:11:10 PM
Cancelled


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on September 24, 2009, 04:15:28 PM
Cancelled

Ugh, I'm so sorry to hear that Maureen.

When are they now saying it will be?

What reason did they give for the cancellation?


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 24, 2009, 04:42:54 PM
It was highly likely that it would never have happened today BUT.......................

...major error on both sides, The play room is visual from Reece's bed, he was playing happily, Stacey was sat on the bed talking to a parent in the next bed. Somehow like a flash, Reece managed to sneak out the door to the adjoining door which is the KITCHEN. There he persuaded the CLEANER to give him a large drink and he also ate a 1/4 of a bread roll of the side bfore Stacey realised he was in there, which the cleaner denies giving him. She must have watched him get it, the tops are high,. Yes, Stacey was negligent as the hospital say, but in her defence Stacey herself has shut the kitchen door at least 8 times today to stop children wandering in there it is continuosly left ajar. Also, the kitchen door is a, right next to the play room, well planned new hospital designer, B, WTF was the cleaner doing giving out drinks and allowing food to be eaten when not knowing the child condition.

Reece is not silly, he is hungry, he has, like Darren said , adapted and overcome the situation.

Starve again from 12 midnight tonight.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on September 24, 2009, 04:58:44 PM
It was highly likely that it would never have happened today BUT.......................

...major error on both sides, The play room is visual from Reece's bed, he was playing happily, Stacey was sat on the bed talking to a parent in the next bed. Somehow like a flash, Reece managed to sneak out the door to the adjoining door which is the KITCHEN. There he persuaded the CLEANER to give him a large drink and he also ate a 1/4 of a bread roll of the side bfore Stacey realised he was in there, which the cleaner denies giving him. She must have watched him get it, the tops are high,. Yes, Stacey was negligent as the hospital say, but in her defence Stacey herself has shut the kitchen door at least 8 times today to stop children wandering in there it is continuosly left ajar. Also, the kitchen door is a, right next to the play room, well planned new hospital designer, B, WTF was the cleaner doing giving out drinks and allowing food to be eaten when not knowing the child condition.

Reece is not silly, he is hungry, he has, like Darren said , adapted and overcome the situation.

Starve again from 12 midnight tonight.

Yikes.

This is like one of those nightmares that just goes on & on......

Tomorrow will be Good Friday.


Title: Re: Reece goes away for Christmas. Again.
Post by: TightEnd on September 24, 2009, 11:05:01 PM
As said by others, have you consdered local paper and your MP Maureen?

If you are too busy, which I am sure you are, others like myself could help apply pressure in other, less direct ways such as those above, to ease the situation Reece finds himself in day after day


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on September 24, 2009, 11:08:44 PM
As said by others, have you consdered local paper and your MP Maureen?

If you are too busy, which I am sure you are, others like myself could help apply pressure in other, less direct ways such as those above, to ease the situation Reece finds himself in day after day

This.

"Noisy neighbours" would be nothing on us lot, if we got on the case.....


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 24, 2009, 11:12:54 PM
Laxie has asked me to write a report / medical brief of Reece's case, hopefully before Monday for Kin. I myself have contacted a daily tabloid but they are not interested, local papers are not really relevant i think, because we live in Huddersfield and this hossy is the new one in Manchester.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on September 24, 2009, 11:15:37 PM
Laxie has asked me to write a report / medical brief of Reece's case, hopefully before Monday for Kin. I myself have contacted a daily tabloid but they are not interested, local papers are not really relevant i think, because we live in Huddersfield and this hossy is the new one in Manchester.

The name of your Local MP?

The name of the Senior Administrator at the Hossie, or the name of the Hossie?



Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 24, 2009, 11:16:22 PM
Darren has been into the Labour office in town just to ask about funding for abroad ie the Boston side of things. But they did not seem confident as there is alternatives over here. Like what he has already had.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 24, 2009, 11:19:53 PM
Laxie has asked me to write a report / medical brief of Reece's case, hopefully before Monday for Kin. I myself have contacted a daily tabloid but they are not interested, local papers are not really relevant i think, because we live in Huddersfield and this hossy is the new one in Manchester.

The name of your Local MP?

The name of the Senior Administrator at the Hossie, or the name of the Hossie?


We only get to see the ward manager, maybe used to be called matron. of ward 79 manchester childrens hospital. (The new one)



Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 24, 2009, 11:21:51 PM
http://www.borninmanchester.co.uk/


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on September 24, 2009, 11:23:54 PM
This Hossie Maureen?

http://www.cmft.nhs.uk/childrens-hospitals/home.aspx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 24, 2009, 11:25:22 PM
Local mp   Barry Sheerman


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 24, 2009, 11:25:48 PM
This Hossie Maureen?

http://www.cmft.nhs.uk/childrens-hospitals/home.aspx

Yes.


Title: Re: Reece goes away for Christmas. Again.
Post by: TightEnd on September 24, 2009, 11:27:44 PM
http://www.barrysheerman.org.uk/


Maureen please send me a summary of the case, just the same one you send to Laxie, whenever you manage that


I will send you a copy of the letter before it is sent for your approval


Title: Re: Reece goes away for Christmas. Again.
Post by: TightEnd on September 24, 2009, 11:29:03 PM
http://www.barrysheerman.org.uk/


Maureen please send me a summary of the case, just the same one you send to Laxie, whenever you manage that


I will send you a copy of the letter before it is sent for your approval


also to be sent to Central Manchester MP

http://www.tonylloydmp.co.uk/


names of administrators, hopsital bosses etc and any timeline would be great


Title: Re: Reece goes away for Christmas. Again.
Post by: Colchester Kev on September 24, 2009, 11:30:11 PM
http://www.barrysheerman.org.uk/


Maureen please send me a summary of the case, just the same one you send to Laxie, whenever you manage that


I will send you a copy of the letter before it is sent for your approval

Dont bother sending me the letter Mo, I am just gonna go round his house and shit in his pillowcase.

xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 24, 2009, 11:30:34 PM
Ty, will endeavour to do it after supposed surgery tomorrow. xx


Title: Re: Reece goes away for Christmas. Again.
Post by: TightEnd on September 24, 2009, 11:34:09 PM
Ty, will endeavour to do it after supposed surgery tomorrow. xx

Don't over rush it Maureen, this is a medium term thing to put pressure on to minimise the risk of this in the future. Take care of the short term priorities and only then address a note to us.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 24, 2009, 11:34:59 PM
http://www.barrysheerman.org.uk/


Maureen please send me a summary of the case, just the same one you send to Laxie, whenever you manage that


I will send you a copy of the letter before it is sent for your approval

Dont bother sending me the letter Mo, I am just gonna go round his house and shit in his pillowcase.

xxx

This really made me lol. XXX


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 24, 2009, 11:36:40 PM
Bed now, tired,  ty for the support, don't feel quite so going it alone sort of thing.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on September 24, 2009, 11:38:27 PM

Now we are cooking, thanks Tighty.

Our secret weapon for letter-writing is MANTIS.



Title: Re: Reece goes away for Christmas. Again.
Post by: TightEnd on September 24, 2009, 11:39:29 PM

Now we are cooking, thanks Tighty.

Our secret weapon for letter-writing is MANTIS.




and if it all goes wrong, we send GreekStein and Bolt into battle. Short, sharp shock treatment


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on September 24, 2009, 11:46:13 PM

Now we are cooking, thanks Tighty.

Our secret weapon for letter-writing is MANTIS.




and if it all goes wrong, we send GreekStein and Bolt into battle. Short, sharp shock treatment

here to help!


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on September 25, 2009, 02:28:29 AM
Between us, we'll sink the feckers if they don't sort the wee Lad out!!!


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on September 25, 2009, 10:01:05 AM
Maureen rang me this morning at about 9:30am. Reece had just gone down for his op.

She was in floods of tears. I suspect it was partly relief, partly because Reece knew what was coming and went kicking and screaming.


As the song says, It's just another day for you and me in Paradise. For them, the living nightmare continues.

Hold them in your thoughts.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on September 25, 2009, 10:08:53 AM
Thanks for the update.  They'd better treat him like a VIP after all the delays.

Thinking of ye.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on September 25, 2009, 10:12:03 AM
 ;goodluck; ;goodluck; ;goodluck;


Title: Re: Reece goes away for Christmas. Again.
Post by: kinboshi on September 25, 2009, 10:24:17 AM
;goodluck; ;goodluck; ;goodluck;

Thinking about the big wee man.


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on September 25, 2009, 10:32:42 AM
;goodluck; ;goodluck; ;goodluck;

Thinking about the big wee man.


Title: Re: Reece goes away for Christmas. Again.
Post by: boldie on September 25, 2009, 10:47:44 AM


Title: Re: Reece goes away for Christmas. Again.
Post by: Rod Paradise on September 25, 2009, 10:58:30 AM

Thoughts with You, Darren , Stacy & Reece Mo.

I'm infuriated at how you've all been treated & wish I had an idea of what to do to make a difference & make the Hospital & Health Service straighten this all up. It's so frustrating for me not to be able to help, I can't imagine how it must be for you.

Hope the op goes well for the wee man!


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on September 25, 2009, 11:00:23 AM
fingers crossed for a better day today xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on September 25, 2009, 11:22:19 AM
Reece has just come out of surgery, His new line is in a vein in his groin. (I think he is down to his last one now)

He's grumpy, but OK.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on September 25, 2009, 11:30:54 AM
Ugh.  Pleeeeeeease let this one hold.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: ripple11 on September 25, 2009, 11:44:15 AM
 Impossible to read this and not get so bloody angry and upset.

America really looks like the next best option, ...we need to make it happen.

All fingers crossed, and best wishes.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on September 25, 2009, 12:27:36 PM

Reece, today.


Title: Re: Reece goes away for Christmas. Again.
Post by: kinboshi on September 25, 2009, 12:28:11 PM
Good lad. 



Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on September 25, 2009, 12:29:12 PM

I can only assume the photograph was taken post-op. I received it 10 minutes ago.



Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on September 25, 2009, 12:32:13 PM
To all those who have offered help, support, or just expressed anger - you cannot begin to imagine how much it helps Maureen & the family. More of the same would do nicely.

As for young Reece, taken down to surgery this morning howling, I can't bear to think about it too much. I'm glad I'm not a parent, I could not handle all that.

But if Reece were my boy, I'd be as proud as punch. What a brave lad.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on September 25, 2009, 12:33:34 PM
Reece, nibbles and his dino blanket...post op.  Lovely to see.


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on September 25, 2009, 12:43:32 PM
every cloud......


Title: Re: Reece goes away for Christmas. Again.
Post by: TheChipPrince on September 25, 2009, 12:43:45 PM
Good lad. 




Title: Re: Reece goes away for Christmas. Again.
Post by: mondatoo on September 25, 2009, 12:55:03 PM
Great pics,hope ur all feeling bit better


Title: Re: Reece goes away for Christmas. Again.
Post by: boldie on September 25, 2009, 01:06:56 PM


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on September 25, 2009, 01:19:16 PM
Reece, nibbles and his dino blanket...post op.  Lovely to see.


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on September 25, 2009, 01:22:51 PM
As for young Reece, taken down to surgery this morning howling, I can't bear to think about it too much. I'm glad I'm not a parent, I could not handle all that.

But if Reece were my boy, I'd be as proud as punch. What a brave lad.

This. I was a complete emotional wreck when Hannah had to go under general anaesthetic just for a routine operation on a broken arm.  Hearing what Maureen and Stacey and other parents on blonde have to see their little loved ones go through time and time again is postively heart-breaking. These kids are true heros.


Title: Re: Reece goes away for Christmas. Again.
Post by: EvilPie on September 25, 2009, 01:34:20 PM

As for young Reece, taken down to surgery this morning howling, I can't bear to think about it too much. I'm glad I'm not a parent, I could not handle all that.


This is not a good reason to not want to be a parent.

Quote

But if Reece were my boy, I'd be as proud as punch. What a brave lad.


And this is why.

Best wishes to Mo, Darren and the other's who I haven't personally met especially little Reece of course.


Title: Re: Reece goes away for Christmas. Again.
Post by: trafficjam on September 25, 2009, 02:12:13 PM
Impossible to read this and not get so bloody angry and upset.

America really looks like the next best option, ...we need to make it happen.

All fingers crossed, and best wishes.


Agree hugs and xx


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on September 25, 2009, 02:21:18 PM
now thats the pic we all wanted to see the little man sitting up in his bed eating xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Rod Paradise on September 25, 2009, 02:24:24 PM
As for young Reece, taken down to surgery this morning howling, I can't bear to think about it too much. I'm glad I'm not a parent, I could not handle all that.

But if Reece were my boy, I'd be as proud as punch. What a brave lad.

This. I was a complete emotional wreck when Hannah had to go under general anaesthetic just for a routine operation on a broken arm.  Hearing what Maureen and Stacey and other parents on blonde have to see their little loved ones go through time and time again is postively heart-breaking. These kids are true heros.

They are, but so are their families who carry on through all this - I doubt I'd be able to.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on September 25, 2009, 02:57:15 PM
As for young Reece, taken down to surgery this morning howling, I can't bear to think about it too much. I'm glad I'm not a parent, I could not handle all that.

But if Reece were my boy, I'd be as proud as punch. What a brave lad.

This. I was a complete emotional wreck when Hannah had to go under general anaesthetic just for a routine operation on a broken arm.  Hearing what Maureen and Stacey and other parents on blonde have to see their little loved ones go through time and time again is postively heart-breaking. These kids are true heros.

They are, but so are their families who carry on through all this - I doubt I'd be able to.

That's the thing Rod.

Kids are enormously resilient. The more adversity they have to overcome as a child, the bigger, better, stronger adult they become. They do.

But how the Family find ways to cope is another matter entirely.

Assuming the hossies sort out Reece's physical problems, he's gonna be an absolute giant of a man.


Title: Re: Reece goes away for Christmas. Again.
Post by: celtic on September 25, 2009, 03:23:41 PM
The child inspires the parents to get through it imo.

Glad he has finally had his op Mo.


Title: Re: Reece goes away for Christmas. Again.
Post by: TheChipPrince on September 25, 2009, 03:25:46 PM
Pardon my stupidity, what exactly is the op for?


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 25, 2009, 06:13:32 PM
ChipP..it was a new line, about his 15th, small op to some and only took 1 1/2hours, but more serious on Reece due to lack of veins.

Home now, what a week.........aye. Talk about emotional.

I cannot thank you all enough for the support you have all shown. I understand it may be hard for some of you to understand, but trust me, each and every post , call,  text, pm really come at times when , I personally really need a boost. I like to think I am strong for us trust me, at times a am a chocolate fire guard.

A couple of you mention that you would not cope, trust me when it smacks you in the face and there is no choice but  to get on with it you'd cope too. I always thought like that, but when it happens, and after feeling sorry for yourself, then trying to workout how many butterfly wings you pulled off in the past for this to happen to you, one finally resides to the fact that life as we knew it has gone, it will never come back, that carefree life where the only worries were my figure / does my bum look big in this / what do the neighbours think, wish I had a nice home / car... etc etc .... do not matter in the least. Nothing does apart from us getting through this remaining intact as a family unit with Reece out living us. Plus giving Reece the strength he needs, after all he is the one that is ill .He is our life now, obv we go out but our minds are always on him, I personally never let go any more, , no matter how tipsy you are or how big a poker hand you have on that final table or whilst chilling in the steam room at the gym, there is ALWAYS a part of your mind that is on him. I am proud Tony Yes, to have such a very brave boy as my Grandson. I just wish it was me and not him.

He has a few small incisions, in the groin, and the line now comes out of his left side of his lower tummy. His main concern is " how am i going to wee Grandma, cause if I put my widgey roody over the toilet my line will flop in too" and the doctor lied to him. he told him he wasn't having the  needle that makes him go shakey shakey then sleep but he did give it him, lol. so funny still after all he goes through.

THANKS everyone from the bottom of my heart. XXXXXXX
Anyway, get this, he is now on his way home, sleeping in our bed, of course,



Title: Re: Reece goes away for Christmas. Again.
Post by: mondatoo on September 25, 2009, 06:18:36 PM
Great post xx


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on September 25, 2009, 06:20:52 PM
ChipP..it was a new line, about his 15th, small op to some and only took 1 1/2hours, but more serious on Reece due to lack of veins.

Home now, what a week.........aye. Talk about emotional.

I cannot thank you all enough for the support you have all shown. I understand it may be hard for some of you to understand, but trust me, each and every post , call,  text, pm really come at times when , I personally really need a boost. I like to think I am strong for us trust me, at times a am a chocolate fire guard.

A couple of you mention that you would not cope, trust me when it smacks you in the face and there is no choice but  to get on with it you'd cope too. I always thought like that, but when it happens, and after feeling sorry for yourself, then trying to workout how many butterfly wings you pulled off in the past for this to happen to you, one finally resides to the fact that life as we knew it has gone, it will never come back, that carefree life where the only worries were my figure / does my bum look big in this / what do the neighbours think, wish I had a nice home / car... etc etc .... do not matter in the least. Nothing does apart from us getting through this remaining intact as a family unit with Reece out living us. Plus giving Reece the strength he needs, after all he is the one that is ill .He is our life now, obv we go out but our minds are always on him, I personally never let go any more, , no matter how tipsy you are or how big a poker hand you have on that final table or whilst chilling in the steam room at the gym, there is ALWAYS a part of your mind that is on him. I am proud Tony Yes, to have such a very brave boy as my Grandson. I just wish it was me and not him.

He has a few small incisions, in the groin, and the line now comes out of his left side of his lower tummy. His main concern is " how am i going to wee Grandma, cause if I put my widgey roody over the toilet my line will flop in too" and the doctor lied to him. he told him he wasn't having the  needle that makes him go shakey shakey then sleep but he did give it him, lol. so funny still after all he goes through.

THANKS everyone from the bottom of my heart. XXXXXXX
Anyway, get this, he is now on his way home, sleeping in our bed, of course,



Enjoy your Friday evening!
x


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on September 25, 2009, 06:21:43 PM
Welcome home Reece  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: HOLDorFOLD on September 25, 2009, 06:26:24 PM
Thinking of you all as always Mo xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: Rooky9 on September 25, 2009, 06:26:52 PM
Nice positive end to the week and hopefully a chance to start moving forward again.  The possible USA treatment etc. I imagine Antonio will be wanting to made an assessment of the operation when he returns too?

I hope you all have a great and stress free weekend. Reece's attitude never fails to amaze, massively brave and hugely intelligent. Absolute one in a million.



Title: Re: Reece goes away for Christmas. Again.
Post by: mondatoo on September 25, 2009, 06:28:28 PM
I'm guna go and have a drink to celebrate the good news,i would normally stay in on a friday as well  ;)


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on September 25, 2009, 06:36:02 PM
I'm guna go and have a drink to celebrate the good news,i would normally stay in on a friday as well  ;)

very noble of you Mond ;)

Glad to hear Reece is back on his way home. Do keep us informed as to the USA stuff etc


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on September 25, 2009, 08:56:48 PM
Just got back from a great day of golf with friends I havn't seen for a while and thought the day couldn't get any better. Well it just did. Well done Reece you brave young man. Gandma and grandpops take the cork out and have a snifter. I am. X


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on September 26, 2009, 06:57:55 PM

Hope all is well today (Saturday) Mo.

x


Title: Re: Reece goes away for Christmas. Again.
Post by: Tonji on September 26, 2009, 09:21:01 PM
All best Reece, Mo & Family. Brighter times ahead. xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on September 27, 2009, 01:39:35 PM
All best Reece, Mo & Family. Brighter times ahead. xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: Karabiner on September 27, 2009, 02:14:21 PM
Onwards and upwards Maureen, still brimfull of admiration for the wee man.

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 27, 2009, 03:58:06 PM
Bit of a worrying time Saturday morning, he was under the weather but has picked up. He is very sore in the groin area and not as mobile as normal but is getting there. Thanks all. xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 27, 2009, 04:12:22 PM
I post this picture to allow those of you that ask questions about TPN, and new lines etc, to make it a little more clear as to why he needs a line. It is so that he can be fastened up to these pumps at night. He stays on these for 12 hours a time.


Title: Re: Reece goes away for Christmas. Again.
Post by: xxMAIRxx on September 27, 2009, 06:05:26 PM
Thinking of you all xx


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on September 27, 2009, 06:21:30 PM
xx


Title: Re: Reece goes away for Christmas. Again.
Post by: mondatoo on September 27, 2009, 09:50:24 PM
Do you know how much the boston thing is gunna cost,will it make him properly better or would it just be a short term measure,if it's guna make him better for life then let's just get going with it it's only money at the end of the day a lot of people including myself and i've never even met you yet are emotionally attached to reece and your situation so let's do it i'm pretty sure whatever the figure is we could achieve it


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 27, 2009, 10:34:51 PM
The op that is performed in Boston, can be performed here, it is down the same line as the major one Reece had last year, very very major surgery, but in a different procedure. The op Reece had was " invented" here. The Bianchi, the op in Boston was invented there, the S T E P. They are both bowel lengthening op's, but the S T E P is now done very much more over there with very successful results. One can not say whether or not it would work for Reece, but looking up on write ups, it looks like they have far more experience over there due to more op's being performed. Saying that, if we could find someone here that was willing to seek advice, so to speak, from Boston, for after care, we may move forward here. Hard to explain, but I can try, Antonino is a paediatric bowel surgeon, we also need a  paediatric nutrient  Consultant  Expert, that can help in Reece's after care. In Manchester it is all about not asking for advice, Reece used to be under the care of Fragbemie, who was his Gastroenterology specialist, but he failed us on many accounts, the main one being, had he introduced us to Antonino in Reece's first year he would have had the Bianchi performed and most likely we would not be in the position we are in now, as in the first year it is quite successful, but instead we were told by him that only a Bowel and Liver transplant was the only option that would save Reece. It wasn't till we went to Birmingham that we were told of Antonino and his Bianchi op, even though Fragbemie and Antonino work in the same hospital. It is all about silly hospital regulations, Antonino was not allowed to contact us and so called poach a patient, give him his due, he tried, but we were not to know this until it was too late. But they all seem very set in their ways, even the Ward Manager said this only this week to us on a meeting we called. She actually said that they are like school children at times, one pulling one way etc and she is in the middle. Very sad really when they are messing with lives, but then she added that they always have the patients best interests being at the foremost, I struggle to understand this. There is a doc in Leeds called Mr John Putnis who we have been put in touch with, we  are trying to arrange an appointment with him but to do this Manchester have to do us a letter that is going to take some time in getting as they are busy etc.. and it will also look bad on them if we move, I personally don't care how bad it looks on them, but Stacey, after all having the final say, is scared to jump out the fire into the frying pan. So hopefully once this meeting is set up we will have an insight as to if Leeds will be a good move. If not Boston it has to be. It would definitely be Boston if money was not an issue but it is and we cant dwell on that fact.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on September 28, 2009, 10:41:28 AM
The op that is performed in Boston, can be performed here, it is down the same line as the major one Reece had last year, very very major surgery, but in a different procedure. The op Reece had was " invented" here. The Bianchi, the op in Boston was invented there, the S T E P. They are both bowel lengthening op's, but the S T E P is now done very much more over there with very successful results. One can not say whether or not it would work for Reece, but looking up on write ups, it looks like they have far more experience over there due to more op's being performed. Saying that, if we could find someone here that was willing to seek advice, so to speak, from Boston, for after care, we may move forward here. Hard to explain, but I can try, Antonino is a paediatric bowel surgeon, we also need a  paediatric nutrient  Consultant  Expert, that can help in Reece's after care. In Manchester it is all about not asking for advice, Reece used to be under the care of Fragbemie, who was his Gastroenterology specialist, but he failed us on many accounts, the main one being, had he introduced us to Antonino in Reece's first year he would have had the Bianchi performed and most likely we would not be in the position we are in now, as in the first year it is quite successful, but instead we were told by him that only a Bowel and Liver transplant was the only option that would save Reece. It wasn't till we went to Birmingham that we were told of Antonino and his Bianchi op, even though Fragbemie and Antonino work in the same hospital. It is all about silly hospital regulations, Antonino was not allowed to contact us and so called poach a patient, give him his due, he tried, but we were not to know this until it was too late. But they all seem very set in their ways, even the Ward Manager said this only this week to us on a meeting we called. She actually said that they are like school children at times, one pulling one way etc and she is in the middle. Very sad really when they are messing with lives, but then she added that they always have the patients best interests being at the foremost, I struggle to understand this. There is a doc in Leeds called Mr John Putnis who we have been put in touch with, we  are trying to arrange an appointment with him but to do this Manchester have to do us a letter that is going to take some time in getting as they are busy etc.. and it will also look bad on them if we move, I personally don't care how bad it looks on them, but Stacey, after all having the final say, is scared to jump out the fire into the frying pan. So hopefully once this meeting is set up we will have an insight as to if Leeds will be a good move. If not Boston it has to be. It would definitely be Boston if money was not an issue but it is and we cant dwell on that fact.

Well if Boston does become something that seems the only answer, then I suggest....

1) You get a ROUGH estimate of cost, including costs for you, Darren or Stacey to go with him, & including Medical Costs, hotel & flight costs, etc.

2) You tell us how much that estimate is, with an approx breakdown.

3) Then we - the blondes - cam have a brainstorming session, to see....

a) If we think it's realistic to try & raise that amount of money.

b) If so, we can set about raising it.

I fullly expect the £umber will be well into 5 figures. But I'd be surprised if, should we all work together, & tap into various money-raising methods & means, we could not have a good go at raising it.

So, if Boston becomes the optimal way forward, we are far from beaten.

Hope the boy is in good heart today.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 28, 2009, 10:46:42 AM
Thanks Tony,

He has gone into school, just so that he isn't missing out too much really. He is still sore so Stacey has asked for him not to be made to go out, walk to lunch etc. If it gets too much he is coming home. I am back on lates today.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on September 28, 2009, 12:49:09 PM
Boston will be 6 figures.  Promise you.  BUT, that doesn't mean we can't come up with ideas between us to get it done.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on September 30, 2009, 10:31:51 AM


How's the lad, Maureen?

And you?


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on October 02, 2009, 11:23:59 AM


How's the lad, Maureen?

And you?



Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on October 02, 2009, 07:45:55 PM
Reece is being sick when he goes on his TPN, he weighed 13.1 here yesterday. He is still going to school. No response yet from the hospital RE; info required for both Leeds and Boston. No contact from Antonino although he was supposed to return to work yesterday. Not sure how we are to be honest, or where for that matter. Plodding springs to mind.


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on October 02, 2009, 07:52:17 PM
Reece is being sick when he goes on his TPN, he weighed 13.1 here yesterday. He is still going to school. No response ye tfrom the hospital RE; info required for both Leeds and Boston. No contact from Antonino although he was supposed to return to work yesterday. Not sure how we are to be honest, or where for that matter. Plodding springs mind.

Plodding Springs. Sounds like somewhere old folks live.

Chin up Maureen.

XX


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on October 02, 2009, 08:02:02 PM
Reece is being sick when he goes on his TPN, he weighed 13.1 here yesterday. He is still going to school. No response ye tfrom the hospital RE; info required for both Leeds and Boston. No contact from Antonino although he was supposed to return to work yesterday. Not sure how we are to be honest, or where for that matter. Plodding springs mind.

Plodding Springs. Sounds like somewhere old folks live.

Chin up Maureen.

XX

ty and modified



Title: Re: Reece goes away for Christmas. Again.
Post by: ripple11 on October 02, 2009, 09:22:09 PM
 I was flicking through the Boston Childrens Hospital website's "giving section"....and noticed on the corporate part that they have an annual poker tournament to raise funds!

 great minds..........

http://giving.childrenshospital.org/NetCommunity/Page.aspx?pid=267#section5


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on October 02, 2009, 09:38:47 PM
I was flicking through the Boston Childrens Hospital website's "giving section"....and noticed on the corporate part that they have an annual poker tournament to raise funds!

 great minds..........

http://giving.childrenshospital.org/NetCommunity/Page.aspx?pid=267#section5

Never saw that ..just been on it looking at doc's etc...


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on October 02, 2009, 09:47:14 PM
HoldorFold mentioned getting Reece a charity number. When i looked at the charity site it said summat about 5k per yr income raised, we dont get that much but if Boston was to become a reality i will contact them via phone and ask about getting him a number. At the moment we just have his bank account that Kev and Rooky9 see. Anyone is welcome to see it too, if they so wish. But if any1 would like to take responsibility of getting an official charity number, I would  gladly agree to that. It would be one less thing for us to take on board.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on October 06, 2009, 10:14:56 AM
Hi Maureen,

How is The Man?


Title: Re: Reece goes away for Christmas. Again.
Post by: trafficjam on October 06, 2009, 04:04:45 PM
Hi Maureen,

How is The Man?


+1


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on October 06, 2009, 05:24:13 PM
He's doing Ok. Still vomiting ever day, Antonino still has not called to chat about anything at all, let alone the balls up, this I find very annoying. The local hospital is sending a " nice " letter to Manchester to ask for case notes. We still have not been updated about the notes that Boston want. All very frustrating. Reece weighed in on our Scales Sunday at 14 kilos. Better than we expected, but worried about this vomiting. We asked for his bloods to be done to make sure the new line was not growing anything to cause the sickness and as yet the cultures are clear. Feels a bit stale mate at the moment to be honest. I try and push Stacey but you have to remember if I push too much and anything goes wrong it will fall back on me no doubt, or at least that is the way I feel. She is doing well at the moment, coping and everything, plus doing her college. It is easy to settle into a routine when things are calm but we mustn't forget, time is valuable here, due to his limited veins. A lot of people do not understand how " normal" if i can say that, Reece is. An awful lot of folk say to me , Does he understand you when you talk to him, I have to then go on to explain that Reece is an everyday child with a major underlying illness. It is so hard at times, no actually I will rephrase that, It is easy hardly ever.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on October 06, 2009, 05:28:08 PM
And he is coping with full days at school very well indeed, only had to leave early once.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on October 06, 2009, 05:30:32 PM

Thanks Maureen.

So often you Post I don't know what to say. This is one of those.

Be brave, be strong, we are all here to help if we can.


Title: Re: Reece goes away for Christmas. Again.
Post by: Harmony26 on October 06, 2009, 07:56:51 PM

Thanks Maureen.

So often you Post I don't know what to say. This is one of those.

Be brave, be strong, we are all here to help if we can.

+2

xoxoxo


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on October 06, 2009, 08:37:30 PM


Be brave, be strong, we are all here to help if we can.


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on October 06, 2009, 08:46:41 PM
must be very frustrating not to have heard from Antonino.  Hope you hear something positive soon xx



Title: Re: Reece goes away for Christmas. Again.
Post by: phatomch on October 07, 2009, 02:15:53 AM
as of recently i am having a hard time and don't know which way to turn or what to do next, but reading how hard young Reece fights everyday of his young life and how he has battled everyday makes me feel a little small and silly for feeling sorry for myself. The lad and your whole family for dealing with this are a miracle and i don't know if i could muster the strength you all manage everyday.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on October 12, 2009, 12:29:54 PM
Still stale mate, still trying to get a referral letter, still being ignored, now been told today the letter has not been started and Antonino has gone away for another week and nothing can be done as he wants to see any letters that leave the hospital.  ;frustrated; ;frustrated; No second opinions now we are definitely trying to get him moved. Reece is still being sick every day, Antonino did not even bother to converse with Stacey after she called his secretary last week requesting an appointment. All very annoying.


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on October 12, 2009, 12:31:36 PM
 ;frustrated; xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on October 12, 2009, 12:34:00 PM
To think that only last year he was saying we really do not want to be in a position where there is only one vein left, and yet here we are using one of his last 2 and still he has not even bothered to speak to us. GOSH I am mad today.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on October 12, 2009, 12:39:57 PM

Ugh.

This is getting close to criminal negligence Maureen. They can't keep procrastinating like this.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on October 12, 2009, 12:44:43 PM
Been on the phone to PALS this morning, she said the only way now is to go through the local doctor, but once again this will take time, first he has to write to Antonino, then he has to write to Mr Puntis, all records have to be copied, Mr Puntis then has to read them and decide if he is the beest person to take Reece on. All this when we were thinking the ball was rolling along these lines already, but apparently NOT. I also mentioned Boston, to PALS, who said that she will request the notes to be released but once again this won't happen until Antonino and his useless secretary return from leave. Once he gets back next week I bet we are again forgotten about.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on October 12, 2009, 12:47:01 PM
I should have done the notes for Kinbo a few weeks ago, but once we got the line in and Reece home it is so easy to try and live a little normal for a while, one just wants to forget how bad it got and move on, then this happens again.


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on October 12, 2009, 01:17:51 PM
continued strength and best wishes to all of you xx

I know how bloody frustrating it must be having to deal with the NHS, only last week i had an appointment with my consultant (who has gone missing for 8-9 months) they couldn't find my notes for 2 hours then got seen quickly by another consultant who umm and arred a bit and then after giving me my prescription I asked " has the virus cleared up yet?",     

 "oh yes came the reply that would have left your system ages ago"

"ORLY then why have you just prescribed me the medicines required to fight the virus?" durrrrrr

was then sent to hand a appointment letter into the ultrasound dept only to be told it needed to go to the x ray dept,so wobbled over there handed in said form told to take a seat,

1 1/2 hours later nurse asks why i am i here? " i told her and she sheepishly looks away, whispers to her mate then her mate comes over and says sorry you should have handed this letter into ultrasound GRRRRR FFS!!!!!


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on October 12, 2009, 01:48:56 PM
Been on the phone to PALS this morning, she said the only way now is to go through the local doctor, but once again this will take time, first he has to write to Antonino, then he has to write to Mr Puntis, all records have to be copied, Mr Puntis then has to read them and decide if he is the beest person to take Reece on. All this when we were thinking the ball was rolling along these lines already, but apparently NOT. I also mentioned Boston, to PALS, who said that she will request the notes to be released but once again this won't happen until Antonino and his useless secretary return from leave. Once he gets back next week I bet we are again forgotten about.

Maureen,

This is too much.

We have to become a "noisy neighbour", & find some in Authority at the Hossie, demonstrate to them what's happening - what's not happening actually - & poke a few folks in the eye to wake them up. This just can't go on, week after week of them stalling for one reason or another.

Tom has called me about the situation, I said I'll get back to him later today, but for now, can you assemble a sort of resume of the story so far (not for the Forum, for the Hossie), or "cliff notes" as the kids call them, please? Get Dawn or Daniel to help, or give them the griff & they can sort of smarten it up into a sort of presentable document. We need to do that in the next 48 hours.

Once that's done, we need to go & bang on some doors. I'm happy to help with that, though I think Tom would be a better choice as # 1 Door-Banger.

None of this is to suggest you have failed in any way - but there is lots of those buggers, & just you, Stacey & Darren to take them on. A bit of extra muscle won't do any harm.

Can you work with Dawn, or Daniel (or whoever) to assemble the story to date, so that they can ponce it up into a Document we can slap peeps round the chops with?


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on October 12, 2009, 01:56:26 PM
More than happy to help.  This whole situation has become unforgivable.  Would even get on a plane over to you if I thought it would do any good.  Just give a shout and I'll help in whatever way you like/need and I'm sure many others will do the same.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on October 12, 2009, 02:05:47 PM
The door that needed knocking on was P A L S, which I have done today. Basically there is no other way, no where to go but to the GP who like I said has to request referral. I am just looking on the net to see if we can contact Mr Puntis direct, unfortunately, Margaret, who is Reece's local nurse and gets things rolling for us is also on holiday or she would have made some calls today I am sure. I am just waiting on Stacey calling me back as the GP's were on lunch when she rang and so could not speak to anyone. I told PALS this morning how much of a dilemma we are in but she basically said this is the only way and she understands that we have had to wait already but will still have to wait.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on October 12, 2009, 02:29:01 PM
The door that needed knocking on was P A L S, which I have done today. Basically there is no other way, no where to go but to the GP who like I said has to request referral. I am just looking on the net to see if we can contact Mr Puntis direct, unfortunately, Margaret, who is Reece's local nurse and gets things rolling for us is also on holiday or she would have made some calls today I am sure. I am just waiting on Stacey calling me back as the GP's were on lunch when she rang and so could not speak to anyone. I told PALS this morning how much of a dilemma we are in but she basically said this is the only way and she understands that we have had to wait already but will still have to wait.

Yes, I understand & agree 100% Maureen. But we wait & wait, get passed from piller to post, & tomorrow never comes.

If you want us/me to back off, we/I will, but really, nobody at the Hossie is taking respnsibility here, it's pass the parcel time. And Reece is the parcel.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on October 12, 2009, 02:38:58 PM
Don't want you to back off no, never xx Just phoned Reece's community, stand in for Margaret,  nurse. She is going to call the GP and see if they can hurry the letter along. If she finds out anything she will call me back.  Our hands are so tied, we  are basically almost 3 weeks behind from where we thought we were, we can shout till we are blue in the face but we will not get that referral now until the GP requests it. I am just going to try one last thing and that is try and speak to the ward manager again at manchester. P A L S did say that once we have got Reece transferred we need to put all this in writing.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on October 13, 2009, 10:36:44 AM

How did you get on, Maureen?


Title: Re: Reece goes away for Christmas. Again.
Post by: HOLDorFOLD on October 13, 2009, 12:08:55 PM
Still no reply from Charity man that I PM'd you about I'm afraid Mo.      Now moving onto the newspapers, I can only but ask some peeps I know but they have higher echelons to run it by, but if you don't prod and poke you don't get, so fingers crossed.  You never know.

x

Edit - PM sent


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on October 13, 2009, 01:56:27 PM
Been in touch with the Ward Manager over at Manchester today, she went into his notes and No, the letter has not been done, also the appointment we requested last week with Antonino has not been set up. The Ward Manager then went to the ward clerk to request an appointment for when Antonino returns, but the Clerk said she is not allowed to make Appointments for Anotnino he will not let anyone but himself or his secretary do it. So got to wait till Monday.

With Reece being sick I requested swobs to be done last week by the Community Team, they have just rang me and said that Reece has a very large growth of bacteria growing on both his new line and his Gastrostomy, so I might have been right of the sickness cause. She has faxed the results over to Manchester but I told her my concerns that they may not be looked at until Monday coming. However, she says she has already requested antibiotics from his local GP, lets hope they can provide the best ones needed as these usually get prescribed by a specialist in the past, they will be ready tomorrow. It will be interesting to see if anyone does contact us from Manchester re: infection growing or if it will just get left on the shelf over there.

Off to work for me soon but Darren has Reece after School on a Tuesday and the nurse is coming  to weigh him and check him over.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on October 13, 2009, 10:42:09 PM

Sorry I missed your Call today Mo, & never rung you (or Tom, for that matter) back. Bad day here, & all sorts of stuff going down.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on October 13, 2009, 10:47:54 PM
Been in touch with the Ward Manager over at Manchester today, she went into his notes and No, the letter has not been done, also the appointment we requested last week with Antonino has not been set up. The Ward Manager then went to the ward clerk to request an appointment for when Antonino returns, but the Clerk said she is not allowed to make Appointments for Anotnino he will not let anyone but himself or his secretary do it. So got to wait till Monday.

With Reece being sick I requested swobs to be done last week by the Community Team, they have just rang me and said that Reece has a very large growth of bacteria growing on both his new line and his Gastrostomy, so I might have been right of the sickness cause. She has faxed the results over to Manchester but I told her my concerns that they may not be looked at until Monday coming. However, she says she has already requested antibiotics from his local GP, lets hope they can provide the best ones needed as these usually get prescribed by a specialist in the past, they will be ready tomorrow. It will be interesting to see if anyone does contact us from Manchester re: infection growing or if it will just get left on the shelf over there.

Off to work for me soon but Darren has Reece after School on a Tuesday and the nurse is coming  to weigh him and check him over.

This is tilting me super hard Maureen, so God only knows how you must feel.

I just can't grasp all this bureaucracy & Admin stuff.

There's no law which says Reece's GP is the only person on earth who can refer him, & this "nobody can book an appointment with Antonio so you'll have to wait" is so wrong. But in your position, I do understand, it's so tough to break down these sodding barriers that these bloody jobs-worths keep putting in the way.

Now he has - almost certainly - an infection on the way, & their answer is to have the antibiotics ready to cure the infection. Better by far to stop the infection before it arrives, surely to God?

I know you know all this, but it's easier to see this from a distance.

I hope this does not come across wrong, (I apologise if it does) but it's unbelievable, and I am super-dooper grumpy tonight.

I'll call you tomorrow (Wednesday).

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on October 14, 2009, 06:59:40 PM
On the brighter side, here's the man today, just after school finished.

Thanks Maureen.



Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on October 14, 2009, 07:56:12 PM

On the brighter side, here's the man today, judt after school finished.

Thanks Maureen.



 :)up


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on October 15, 2009, 08:39:53 AM
Poor night last night, Reece slept over here but was uncomfy all night, vomiting and the noise coming from his tummy was unbelievable, not stop curdling all night long and so loud. Therefore no school today. Already spoke to a community nurse this morning who is coming over later this morning, she is also calling his new consultant in Calderdale to put him in the picture, however, he is a Paediatric Consultant, not the specialist in Reece's field that we are trying to get over to. It may mean they contact Manchester to seek advice, which in that case it will be a trip over there and a sit in A n E for hours on end no doubt. We really do not want to set foot in that place again so a bit of a dilemma really, we have to do what is best for Reece and if he needs to be seen over there then we will have to bite our tongues and go I suppose. He is OK in himself today, eaten his breakfast and now looking through toy mags for birthday and Christmas pressys. He has got a cold starting though.  Weight last night 14 kilos, Weight this am after vomits 13.5.

The GP could not see Stacey until Friday morning to discuss the referral letter. So still waiting on that one.


Title: Re: Reece goes away for Christmas. Again.
Post by: Karabiner on October 15, 2009, 12:20:54 PM
I really don't know what to say Maureen other than try and keep your chin up and that I'm thinking about you all.

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on October 15, 2009, 12:48:55 PM

Aaarrrggghhh.

I can only echo Ralph's sentiments, I'm lost for words, I just don't know how you cope with all this frustration.

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on October 15, 2009, 12:52:56 PM
I don't know what to say either, but thinking of you all xx


Title: Re: Reece goes away for Christmas. Again.
Post by: trafficjam on October 15, 2009, 01:07:38 PM
Hugs x


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on October 15, 2009, 01:11:22 PM
I'm too frustrated by it all to post anything constructive.


Title: Re: Reece goes away for Christmas. Again.
Post by: trafficjam on October 15, 2009, 01:42:44 PM
Maureen, on ITV News today there was an item from Health Regulators about how the NHS is letting patients down.

Perhaps you should get in touch with the 'Patients Association' who have also been monitoring this, or better still, Cheryl Baker who is leading a campaign to improve patient care in hospitals.




Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on October 15, 2009, 03:20:43 PM
Ugh.  {{{{{HUGS}}}}}  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on October 15, 2009, 03:55:48 PM
Thanks all for the comments. I am at work now until late but will look into Trafficjams post asap. Meanwhile we did his bloods today we can only hope that the infection infection has not not reached the inside of the line.  We also did a stool sample to see if there is owt going on in the gut.


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on October 15, 2009, 05:27:37 PM
Just an idea but who is the the MP who we could all email and demand he looks into this shambles surely if he gets shedloads of emails it cant do any harm?

as always thoughts going out to ya all xx


Title: Re: Reece goes away for Christmas. Again.
Post by: trafficjam on October 15, 2009, 07:06:50 PM
Just an idea but who is the the MP who we could all email and demand he looks into this shambles surely if he gets shedloads of emails it cant do any harm?

as always thoughts going out to ya all xx

I agree, that is a good idea.

I have just remembered. I think Cheryl Baker is also into poker as I think she has played as a guest on Sky Pokler.


Title: Re: Reece goes away for Christmas. Again.
Post by: TightEnd on October 15, 2009, 07:22:56 PM
I've put on the thread the names of the MPs both for Maureen/family and the Manchester hospital

I am happy to draft a note to both, and forward it to Maureen for approval but need for her a timeline of events/facts of the case/lists of professional people involved to make it have impact

of course Maureen is snowed under with day to day life so can't be expected to drop everything and get all that to me, but when she can, I'll write them a helluva powerful letter.

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on October 15, 2009, 07:37:55 PM
You d man Rich!


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on October 15, 2009, 07:44:43 PM
http://www.barrysheerman.org.uk/


Maureen please send me a summary of the case, just the same one you send to Laxie, whenever you manage that


I will send you a copy of the letter before it is sent for your approval

wow how time flies and they are still in no mans land


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on October 15, 2009, 11:55:25 PM
I've put on the thread the names of the MPs both for Maureen/family and the Manchester hospital

I am happy to draft a note to both, and forward it to Maureen for approval but need for her a timeline of events/facts of the case/lists of professional people involved to make it have impact

of course Maureen is snowed under with day to day life so can't be expected to drop everything and get all that to me, but when she can, I'll write them a helluva powerful letter.

xx

I am on lates again tomorrow, Saturday too is taken up, I do have Sunday free, ATM and shall try then to put something together. ps I am useless at things like this. Always get scared.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on October 16, 2009, 12:10:13 AM
I've put on the thread the names of the MPs both for Maureen/family and the Manchester hospital

I am happy to draft a note to both, and forward it to Maureen for approval but need for her a timeline of events/facts of the case/lists of professional people involved to make it have impact

of course Maureen is snowed under with day to day life so can't be expected to drop everything and get all that to me, but when she can, I'll write them a helluva powerful letter.

xx

Oh boy, they'd better be afraid. I've seen Rich's tetchy-wetchy letters.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on October 20, 2009, 06:07:50 PM
Lots has happened over the last 2 days, and maybe when I feel up to writing I will be able to explain in more detail but for now.

Antonino is back and has called both myself and Stacey yesterday. Today Reece, Stacey and Darren went for an in depth meeting with him, I couldn't go as I was drawn to go for a random Drugs and Alcohol screening and if I refuse to attend it ican be classed as a positive, not had one for 8 bloody years and of all the days they pull me today. Anyway, the results.

Re: Boston. All up to date info is being sent.

Re: Transfer to Leeds, going ahead.

Re: Reece's immediate condition. Xray done today, Barium meal tomorrow. So sad to say but it looks like our hero needs the S T E P operation.

The S T E P is what we want done in Boston, that was if he needed it, by Kim Heung who invented it and who we are in contact with, but hey we all now the reality is major bucks so they say. Antonino reckons he can do it here, He wants to do it as soon as we have built Reece back up as he is being sick an awful lot and is on a steady decline. So short term plan is increase the TPN, transfer to Leeds, with a veiw of the Surgery being done by Antonino in Manchester then once the little fella is able to be transferred he can go to Leeds for post op care with Mr Puntis who is a specialist in the nutrient side and apparently has a very good team.

All this depends also as to if Mr Puntis will allow the surgery to take place in Manchester or if he feels there is someone with more experience in Leeds. We don't actually know as yet how many of these procedures have been done by Antonino or by Leeds surgeons, however what we do know is the Boston have done a great many with a high success rate.

It's chuffin hard...and so bloody sickened for Reece to have to go through all that again.



Title: Re: Reece goes away for Christmas. Again.
Post by: Wardonkey on October 20, 2009, 06:21:29 PM
Mo, I never know how to express how I feel after reading your posts on this thread.

You are all heroes.


Title: Re: Reece goes away for Christmas. Again.
Post by: Rooky9 on October 20, 2009, 06:24:25 PM
These appear to be positive steps towards an end goal, which must be great after the last few weeks. I appreciate it's a massively critical time for you all. Hope things continue to move forward and there are some more assurances from the docs heading your way.


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on October 20, 2009, 07:10:40 PM
Mo, I never know how to express how I feel after reading your posts on this thread.

You are all heroes.

this &  ;frustrated;


Title: Re: Reece goes away for Christmas. Again.
Post by: xxMAIRxx on October 20, 2009, 07:14:30 PM
Thinking of you all xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on October 20, 2009, 08:45:15 PM
Mo, I never know how to express how I feel after reading your posts on this thread.

You are all heroes.


I can't sum it up beter than this. Be strong little soldier. X


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on October 20, 2009, 09:06:10 PM
Tonight he went to bed at 5.30, after asking Darren, when will i feel normal again, i am sick of being sick.  Clever little fella, although normal to him is possibly far from you or i feeling normal.  The sickness may be down to a blockage in his bowel,  the xray today showed up a large solid form in his bowel but the barium tomorrow will give a better incline.


Title: Re: Reece goes away for Christmas. Again.
Post by: ripple11 on October 20, 2009, 09:13:07 PM
Lots has happened over the last 2 days, and maybe when I feel up to writing I will be able to explain in more detail but for now.

Antonino is back and has called both myself and Stacey yesterday. Today Reece, Stacey and Darren went for an in depth meeting with him, I couldn't go as I was drawn to go for a random Drugs and Alcohol screening and if I refuse to attend it ican be classed as a positive, not had one for 8 bloody years and of all the days they pull me today. Anyway, the results.

Re: Boston. All up to date info is being sent.

Re: Transfer to Leeds, going ahead.

Re: Reece's immediate condition. Xray done today, Barium meal tomorrow. So sad to say but it looks like our hero needs the S T E P operation.

The S T E P is what we want done in Boston, that was if he needed it, by Kim Heung who invented it and who we are in contact with, but hey we all now the reality is major bucks so they say. Antonino reckons he can do it here, He wants to do it as soon as we have built Reece back up as he is being sick an awful lot and is on a steady decline. So short term plan is increase the TPN, transfer to Leeds, with a veiw of the Surgery being done by Antonino in Manchester then once the little fella is able to be transferred he can go to Leeds for post op care with Mr Puntis who is a specialist in the nutrient side and apparently has a very good team.

All this depends also as to if Mr Puntis will allow the surgery to take place in Manchester or if he feels there is someone with more experience in Leeds. We don't actually know as yet how many of these procedures have been done by Antonino or by Leeds surgeons, however what we do know is the Boston have done a great many with a high success rate.

It's chuffin hard...and so bloody sickened for Reece to have to go through all that again.



Info on the Boston website seems to show Leeds is one of the places that have performed STEP.

There are a few UK hospitals on there. I don't see why you couldn't have a choice of the one with the most experienced/successful surgeon?, given the NHS buzz word at the mo is "choice"

http://www.childrenshospital.org/cfapps/step/index.cfm?CAT=participatingcenters


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on October 20, 2009, 09:25:09 PM
Lots has happened over the last 2 days, and maybe when I feel up to writing I will be able to explain in more detail but for now.

Antonino is back and has called both myself and Stacey yesterday. Today Reece, Stacey and Darren went for an in depth meeting with him, I couldn't go as I was drawn to go for a random Drugs and Alcohol screening and if I refuse to attend it ican be classed as a positive, not had one for 8 bloody years and of all the days they pull me today. Anyway, the results.

Re: Boston. All up to date info is being sent.

Re: Transfer to Leeds, going ahead.

Re: Reece's immediate condition. Xray done today, Barium meal tomorrow. So sad to say but it looks like our hero needs the S T E P operation.

The S T E P is what we want done in Boston, that was if he needed it, by Kim Heung who invented it and who we are in contact with, but hey we all now the reality is major bucks so they say. Antonino reckons he can do it here, He wants to do it as soon as we have built Reece back up as he is being sick an awful lot and is on a steady decline. So short term plan is increase the TPN, transfer to Leeds, with a veiw of the Surgery being done by Antonino in Manchester then once the little fella is able to be transferred he can go to Leeds for post op care with Mr Puntis who is a specialist in the nutrient side and apparently has a very good team.

All this depends also as to if Mr Puntis will allow the surgery to take place in Manchester or if he feels there is someone with more experience in Leeds. We don't actually know as yet how many of these procedures have been done by Antonino or by Leeds surgeons, however what we do know is the Boston have done a great many with a high success rate.

It's chuffin hard...and so bloody sickened for Reece to have to go through all that again.



Info on the Boston website seems to show Leeds is one of the places that have performed STEP.

There are a few UK hospitals on there. I don't see why you couldn't have a choice of the one with the most experienced/successful surgeon?, given the NHS buzz word at the mo is "choice"

http://www.childrenshospital.org/cfapps/step/index.cfm?CAT=participatingcenters

Thank you for that, that is something I can raise tomorrow, any info collated is so very helpful. Kep digging, for us please.


Title: Re: Reece goes away for Christmas. Again.
Post by: ripple11 on October 20, 2009, 11:40:26 PM
 Bit more info..

 The "Nice" guidelines on STEP is here:

http://www.nice.org.uk/nicemedia/pdf/ip/385%20STEP%20for%20SBS%20overview%20for%20web%20240507.pdf

interestingly, one of the specialists involved in the guidlines (list of  6 of them 3/4 of the way down) is Mr Ian Sugarman. He is based at Leeds, and appear to be the main consultant there:

http://www.leedsteachinghospitals.com/patients/service_directory/index.php

Consultant name: Special Interests Inpatient Service Outpatient Service 
Dr SM Davison Paediatric Hepatology/gastroenterology St James's University Hospital St James's University Hospital 
Dr P McClean Hepatology and gastroenterology St James's University Hospital St James's University Hospital 
Dr John Puntis Gastroenterology, clinical nutrition Leeds General Infirmary Leeds General Infirmary 
Dr Sanjay Rajwal Paediatric gastroenterology and children's liver diseases, liver transplantation and post transplantation care St James's University Hospital St James's University Hospital 
Mr I Sugarman Lower GI surgery, inflammatory bowel disease, colonoscopy and surgical treatment of constipation. Leeds General Infirmary Leeds General Infirmary 


I  think I would be keen to get him involved.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on October 21, 2009, 08:22:51 AM
Thanks Ripple,

Hopefully today the Barium will not confirm the worst, ie blockage, then we will have more time to get a meeting set up over in Leeds with Mr Puntis, now like I said he may prefer his team to do the op, we want whoever is best at it or has more experience at doing it. Although Antonino said he has done it he never actually said how many. I will ask him this today. The reason I guess we are scared to have anyone else in the UK operate is because we trust so much Antonino in theatre. It is just everything else that is crap. Wish I had a bit of back up coming with me n Stacey today really as after the Barium we may not feel up to too many questions. We have a meeting with a Manager over there too about the complaints.


Title: Re: Reece goes away for Christmas. Again.
Post by: ripple11 on October 21, 2009, 10:18:14 AM

Nice guidelines say that STEP operations/results have to be sent to Boston for their collection/anaysis. Hence Leeds and other UK hospitals on the Boston list.
 Manchester  isnt on the list...which seems to suggest they haven't done the op?, or not reported it.?

Good luck today.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on October 21, 2009, 10:29:05 AM
Ripple, you are a STAR for digging out all that information for them!  Thank you soooooo much.

Maureen, it's too late to be there from my side of the river today, but if you need back up at any point in the near future just give a shout.  It's only a short trip away. 

I hope the Barium test goes well and know you will pull the strength from some corner of your being to get through this day and get the answers you need.  Will be thinking of you all. xx


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on October 21, 2009, 11:00:44 AM
Best of best luck Mo and all, tricky deciision you will be faced but together you will choose what you all feel is the right 1 xxxxxxxxxxxxx

+ wd ripple although it was all to complicated for me to take in summary by someone would be appreciated ....


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on October 22, 2009, 03:06:04 PM
Any news?  Been thinking of ye.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on October 22, 2009, 03:07:33 PM
Any news?  Been thinking of ye.  xx

Thinking out loud? :P


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on October 22, 2009, 04:38:23 PM
Yes news in, but been at work this am.

Stacey, Reece and I went along to Manchester, we were met by Antonino, who was so nice to us and Reece it made the day very hard. Reece had his Barium, plus some other tests relating to x rays and transit time. There is no obvious blockage, however his bowel has dilated again. Antonino wants to be the one to operate, so I asked him out right how many S T E P's he has done, his answer was there has been 1 done here. Now that may be due to the operation to lengthen the bowel there is the Bianchi, far more technical than the S T E P apparently. He also said that there may have been up to 80 done in Leeds but I am not confident on the Leeds figure until I ask Mr Puntis himself.

We stood our ground and said that we definitely want to go ahead with the move to Leeds, so Antonino faxed the referral to Mr Puntis yesterday. Today I called Mr Puntis secretary to confirm this had been received and yes it has. She also said that he has been prioritised to see him. Not sure how long this will take but mean time Reece is going down hill more each day. Today he has remained on the sofa at ours and started to become incontinent again. His vomiting is still occurring and he has zero appetite, nothing zilch does he want to eat. I confronted Antonino twice yesterday about this and he said he wanted to see the results of all the bariums and X rays, although he was there more or less through all the procedures he needs to look at them all together, then the second time I said what is the matter with him being ill all the time and not eating etc and that we are very worried about him, he said increase the TPN to 5 nights and mention to Mr Puntis about it. But with the way Reece has been today, if no improvement tonight I feel we will be admitting him to Calderdale hoping that they will transfer him to Leeds and not Manchester. But lets see how he goes this evening first.

We also had an in-depth meeting with the head of Theatre and Ward Manager and Head of Nurses. I hope what we said will make a difference and hopefully save another family the trials and tribulations that we feel we encountered whilst being under Manchester.

We just want to leave this all behind now and move on to Leeds where hopefully we will find a team that works together more and gets our little fella sorted out. He has had enough at the minute. We need to focus all on getting Reece well again, I am not sure if will like Leeds or not or whether it is the right move but what I can be certain of is that it can not be no worse.


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on October 22, 2009, 04:42:20 PM
wow talk about stressful,best wishes and thoughts to all of you,must be a really trying time,lets ust hope the little man picks up on his eating soon and the hospital transfer works xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on October 22, 2009, 04:47:53 PM
Best of luck Maureen - hopefully the transfer to Leeds will be a positive step. xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Tonji on October 22, 2009, 04:58:44 PM
Stay positive Mo. Best Wishes xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on October 22, 2009, 05:03:33 PM
OK Reece is being admitted, just spoke to Calderdale where he has open access to the ward, strange he can have it here but couldn't at Manchester,  and he is on his way over as soon as Stacey has packed his things. Will update when I know anything.


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on October 22, 2009, 05:05:32 PM
fingers crossed glglglglglglglgl xx


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on October 22, 2009, 05:50:31 PM
(http://www.ebsworth.com/gallery/images/u105_good_luck.jpg)


Title: Re: Reece goes away for Christmas. Again.
Post by: Harmony26 on October 22, 2009, 07:36:14 PM
gl and thinking of you all.

C&H
xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: Karabiner on October 22, 2009, 08:09:46 PM
xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Geo the Sarge on October 22, 2009, 08:14:57 PM
My greatest wishes to you all Mo xx

Everything crossed here

Geo


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on October 22, 2009, 08:51:00 PM
Crossing things I didn't know could be crossed.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Rooky9 on October 22, 2009, 10:22:26 PM
Thinking of you all.


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on October 26, 2009, 12:32:21 PM
How is the little fella?


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on October 29, 2009, 11:57:30 AM
He's not out of the woods by any stretch of the imagination, but on the plus side...he's coming home today!!! 

{{{{{HUGS}}}}} to the wee man and to the rest of ye.  Enjoy the week-end full of cuddles.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on October 29, 2009, 01:05:15 PM
There no place quite like home xx


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on December 20, 2009, 04:03:42 PM

Amazingly, this Thread, now nearly 80 pages, began 2 years ago this week. And the fella is still strutting his stuff.

Crisis, recovery, crisis, recovery. He must be made of stern stuff, & so must his Family, who carry that weight so well.

Mo sent me this, & I stuck it on my Diary, but for those who somehow manage to get by without reading it...... here it is again.

I have it on good authority that he's a shepherd, though I reckon he's a Wise Man.



Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on December 20, 2009, 04:32:00 PM
Lovely, have a great christmas xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on December 20, 2009, 07:49:37 PM
Fabulous  ;topman;


Title: Re: Reece goes away for Christmas. Again.
Post by: bobby1 on December 20, 2009, 07:50:32 PM
All the best for this Christmas xx


Title: Re: Reece goes away for Christmas. Again.
Post by: ripple11 on December 20, 2009, 10:10:31 PM

Have a wonderful and fun Christmas.


Title: Re: Reece goes away for Christmas. Again.
Post by: Tonji on December 20, 2009, 10:26:08 PM

Have a wonderful and fun Christmas.

 :)up  :)


Title: Re: Reece goes away for Christmas. Again.
Post by: booder on December 20, 2009, 10:27:01 PM

Have a wonderful and fun Christmas.


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on December 20, 2009, 11:04:35 PM


Title: Re: Reece goes away for Christmas. Again.
Post by: I KNOW IT on December 21, 2009, 08:32:10 PM

Have a wonderful and fun Christmas.


Title: Re: Reece goes away for Christmas. Again.
Post by: mondatoo on December 21, 2009, 08:36:23 PM


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on December 22, 2009, 11:09:41 AM
here's hoping you all have a truly wonderful Xmas and new year

lots of love and hugs to you all xxxxxxxxxx


Title: Re: Reece goes away for Christmas. Again.
Post by: pokefast on December 23, 2009, 09:39:28 AM
here's hoping you all have a truly wonderful Xmas and new year

lots of love and hugs to you all xxxxxxxxxx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on December 24, 2009, 10:39:00 AM
Just want to say a quick Thanks for all the Xmas wishes.

There are reasons for me not updating the main one I find it a little hard to speak about and the other we are still in limbo between hospitals as Leeds can not take his case on fully until mid January ( which we only found out this week) and Manchester have discharged him. We cant even get our hands on his 2 main meds that he has every day which help prevent the line infections that he used to continually get until Antonino put him on the meds, So this is a worry as we really could do with these NOW, but we just want to enjoy Christmas which we will do with our little star then full guns blazing mid January.  But he is home and in quite good shape, his tummy bloats so much later in the day it makes him very uncomfy, this is because he has not had the op that he need in Sept yet, but hopefully once Leeds have read his case in full and are ready to take him then this will all be sorted out. His new Gastro specialist will be Mr Puntis and his Surgeon, Mr Sugarman.

Still full time at school obv not now the holidays are here, and full of himself, his quick humour is amazing he is so funny but also has a very serious side to him. Too clever for his own good sometimes lol. You cant white lie to him at all, he knows things before they happen too, very scary at times. Anyway, Stacey and Reece are here for the full Christmas period and we are going to have a ball just the four of us.

Thanks again for another year of support.

Merry Christmas all. XXXxxxx



Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on December 24, 2009, 10:43:35 AM
Hope you all have a great one Mo.


Title: Re: Reece goes away for Christmas. Again.
Post by: Eck on December 24, 2009, 10:52:39 AM
Hope you all have a great one Mo.

 :kiss:


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on December 24, 2009, 12:58:39 PM
Have a great Christmas together.  :-*


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on December 26, 2009, 02:09:38 PM

.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on December 26, 2009, 02:10:08 PM

You have to guess who this is......


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on December 26, 2009, 04:17:16 PM

You have to guess who this is......

Darren?


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on December 26, 2009, 04:24:07 PM
Silly man it's obviously a very scary dinosaur.  ;hattip;


Title: Re: Reece goes away for Christmas. Again.
Post by: Karabiner on December 26, 2009, 06:01:49 PM
Tikay's first pet ?


Title: Re: Reece goes away for Christmas. Again.
Post by: brummieboy on December 26, 2009, 08:07:31 PM
Webbed feet it's got to be someone from Norwich, does Longy have kids?


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on December 26, 2009, 08:19:48 PM
.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on December 26, 2009, 08:23:32 PM
.
This just has to be one of my most fav pictures of him.


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on December 26, 2009, 08:26:58 PM
What a great pic.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on January 14, 2010, 06:08:24 PM
Monday is the big day, Leeds are now ready for him and we have a complete team meeting at 1400 hrs Monday.

We have to train to administer new drugs and various other things which Leeds use that Manchester don't and the way they administer the TPN is different too.

Feeling very apprehensive as one good thing I can say about the antibiotics which Antonino let us use every day and which has dramatically reduced Reece's line infections will be stopped. Leeds do not use it. Reece used to be constantly in hossy with line infections until he started this drug so lets hope that Leeds will use something equally as good as a lot of Consultants do not believe in using them daily as they reckon a person gets immune to them, well in Reece's case obv he has not and this has been proved. We will have to wait until Monday to see what they are going to do I guess.

Here's hoping we have made the right move but only time will tell, one thing is for sure we are not going to give up trying to get Reece free of machines no matter what is said, we can not and will not give up.

Reece has had a great run, free from hossy for ages lets hope this continues but we do anticipate more surgery, of which we are not sure until we meet his new surgeon, Ian Sugarman, Mr Puntis chosen man.



Title: Re: Reece goes away for Christmas. Again.
Post by: Wardonkey on January 14, 2010, 06:11:59 PM
 ;goodluck;


Title: Re: Reece goes away for Christmas. Again.
Post by: Colchester Kev on January 14, 2010, 06:23:35 PM
;goodluck;

+ a million.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on January 14, 2010, 06:26:41 PM

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on January 14, 2010, 06:52:23 PM
(http://academiclink.stevensonuniversity.org/files/Good-Luck-Balloons.jpeg)


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on January 14, 2010, 08:33:28 PM
Thanks guys. Will let you know how we go on.


Title: Re: Reece goes away for Christmas. Again.
Post by: Tonji on January 15, 2010, 12:28:52 AM
All the best


Title: Re: Reece goes away for Christmas. Again.
Post by: mondatoo on January 15, 2010, 12:45:48 AM
(http://academiclink.stevensonuniversity.org/files/Good-Luck-Balloons.jpeg)


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on January 15, 2010, 11:15:40 AM
good luck   ;goodluck;

am sure Mr Sugarman will be sweet and with a first name like Ian your definitely onto a winner


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on January 19, 2010, 05:40:46 PM
It was a big meeting, with consultants, registrars, specialists nurses, pharmacist, local community team and Reece's local consultant we were there 4 1/4 hours in total.

We feel it went very well and Mr Puntis explained that there may be things they can try to get Reece off TPN even though his initial opinion was that after reaching 5 it was unlikely he would ever come off. There are so many many tests to be done first though, tests that have not been done at Manchester on him, so until these are finished surgery, unless absolutely emergency will not be imminent, but there will be some going to happen. There also was mentioned removing the gastrostomy and putting in another tube that will go directly into the lower bowel and we will then attempt feeds again, which Reece has never tolerated into his tummy, but this will bypass the gut so may be worth a try. Firstly will be an increase to his TPN as he is not growing and is terribly under weight, this may also help the bowel to function better. Also mentioned was a reflux op, but not too sure yet about that plus the S T E P was mentioned. So all is not lost.

Through it all Reece sat there and never moaned once, except for saying I don't want to go to theatre again. We just have to explain why things have to be done and he sort of understands but also aks why him so I told him I have to go too, but Grandad and mummy don't. It just seemed to help explain that some folk do and some folk don't neep op's. There's no flies on this fella I tell ya.

x


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on January 19, 2010, 07:57:54 PM
You are sounding positve Mo and that shows through in the little man,

You are ALL doing Reece proud and we are all with ya 100% of the way



xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on January 19, 2010, 07:58:36 PM
Ty Ian.


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on January 19, 2010, 08:06:04 PM
Early days Maureen, but it sounds promising.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on January 19, 2010, 10:02:03 PM
Ty Tom.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on January 20, 2010, 02:38:40 AM
Thinking of all of ya and sending good vibes and loads of cyber hugs.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Dingdell on January 22, 2010, 07:01:12 PM
Thinking of all of ya and sending good vibes and loads of cyber hugs.  xx

This - fingers crossed. xx


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on January 22, 2010, 07:55:02 PM

XX


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on January 22, 2010, 11:44:25 PM
Ty,

There are so many changes taking place on how we administer the TPN, a lot lot easier, plus Leeds actually can use the Omegaven PN if need be, which is what we wanted Manchester to do as it is not dangerous to the livers. Also the new intravenous pump we are getting is small and it will allow Reece to be mobile whilst on his TPN instead of being stuck in his bed for 12 hours a night.


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on January 22, 2010, 11:48:25 PM
I love it when the news is good.


Title: Re: Reece goes away for Christmas. Again.
Post by: Eck on January 22, 2010, 11:50:09 PM
I love it when the news is good.

+ xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on January 23, 2010, 03:16:45 PM
I love it when the news is good.

Indeed Tom X


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on January 26, 2010, 08:29:54 PM
Three nights on increased TPN and Reece looks totally different, we can not believe how different he looks so we weighed him, 15.2 kilos, that is the most in heck knows how long. Unreal.


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on January 26, 2010, 08:34:12 PM
 ;letsparty; ;mexicanwave; ;letsparty;


Title: Re: Reece goes away for Christmas. Again.
Post by: Tonji on January 26, 2010, 09:57:19 PM
Brilliant  :)


Title: Re: Reece goes away for Christmas. Again.
Post by: mondatoo on January 26, 2010, 10:09:34 PM
Great news


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on February 05, 2010, 11:56:17 AM
First of Leeds tests were done yesterday, the Barium, it shows up what we suspected that the bowel is very much more dilated. Back in Sept Antonino had this test done at Manchester and told us an op was required in the next few weeks as the bowel had distended a lot since July 09, but this didn't happen with all the mix up over moving to Leeds etc, so now it has dilated more it seems. Anyway, we now have to wait again to see what Leeds next move is, so patience once again i suppose is needed.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on February 18, 2010, 01:34:12 PM
Reecehas just gone into recovery room , been down for 3 hours this time. Results in 2 weeks.


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on February 18, 2010, 05:44:15 PM
Fingers crossed for the best results for the little soldier. X


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on February 18, 2010, 05:49:18 PM
xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on February 18, 2010, 05:55:52 PM
{{{HUGS}}}


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on February 18, 2010, 05:56:49 PM

Thoughts are with you all Maureen.


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on February 19, 2010, 11:53:34 AM
Kid is a legend


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on February 24, 2010, 07:46:01 PM
Just a little update of no importance to you really just want to share it, although Reece has impending surgery and he is on TPN, the boy is doing so bloody well. He is once again full of beans, drawing up contracts, yes that is his words, to stop me from putting his new Gastrostomy cream on, which i have to sign, he looks great, feels great at times apart from when his tummy gets so dilated we think it is going to pop so we drain off the excess fluid, then he stops being sick and eats more. He is slowly gaining weight and we are having so many  more fun times with him. Not looking forward to the surgery, we tricked him last week, so he says, into being put under, then he sat up quick to see where he had been cut but he hadn't, not yet anyway. It was to test his veins. No results in yet.

We have also been told that we can have an Haven holiday with him via a charity. All his kit will be delivered and we just have to make our way there, so we are going to chose three dates that suit us and hopefully make one of them. So we don't have to worry about booking it then him being too ill to go which is the usual scenario. This will be Reece's 2nd time away from home apart from being in hossy, last yr we went to Wales but he was not on tip top form so we are hoping this time he will have a ball. We will be able to put him on his PN then go out with him, this is a first for us and we have to thank this new procedure at Leeds for that.


Title: Re: Reece goes away for Christmas. Again.
Post by: mondatoo on February 24, 2010, 07:47:55 PM
Really good to hear positive news,pleased for you all.


Title: Re: Reece goes away for Christmas. Again.
Post by: bobby1 on February 24, 2010, 07:48:13 PM
Just a little update of no importance to you really just want to share it, although Reece has impending surgery and he is on TPN, the boy is doing so bloody well. He is once again full of beans, drawing up contracts, yes that is his words, to stop me from putting his new Gastrostomy cream on, which i have to sign, he looks great, feels great at times apart from when his tummy gets so dilated we think it is going to pop so we drain off the excess fluid, then he stops being sick and eats more. He is slowly gaining weight and we are having so many  more fun times with him. Not looking forward to the surgery, we tricked him last week, so he says, into being put under, then he sat up quick to see where he had been cut but he hadn't, not yet anyway. It was to test his veins. No results in yet.

We have also been told that we can have an Haven holiday with him via a charity. All his kit will be delivered and we just have to make our way there, so we are going to chose three dates that suit us and hopefully make one of them. So we don't have to worry about booking it then him being too ill to go which is the usual scenario. This will be Reece's 2nd time away from home apart from being in hossy, last yr we went to Wales but he was not on tip top form so we are hoping this time he will have a ball. We will be able to put him on his PN then go out with him, this is a first for us and we have to thank this new procedure at Leeds for that.

best wishes Maureen


Title: Re: Reece goes away for Christmas. Again.
Post by: Colchester Kev on February 24, 2010, 07:51:31 PM
Positive steps Mo ... so pleased. xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Dingdell on February 24, 2010, 08:18:38 PM
Blonde Bash anyone? Haven Holidays here we come!

Great news Maureen xx


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on February 24, 2010, 09:35:37 PM
Wonderful news Maureen!

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Hairydude on February 24, 2010, 09:37:41 PM
best wishes


Title: Re: Reece goes away for Christmas. Again.
Post by: kinboshi on February 24, 2010, 09:44:34 PM
All sounds good Mo - thinking about the little fella and all of you :)up


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on February 24, 2010, 09:47:02 PM
Thankyou.


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on February 25, 2010, 12:22:24 PM
Remember this?
YouTube: http://www.youtube.com/watch?v=SuBC6hs-79Q


Title: Re: Reece goes away for Christmas. Again.
Post by: Karabiner on February 25, 2010, 12:26:17 PM
xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on February 25, 2010, 12:33:41 PM
Great News xx


Title: Re: Reece goes away for Christmas. Again.
Post by: technolog on February 25, 2010, 01:10:00 PM
Very pleased for you all Mo - keep up the good work fella.


Title: Re: Reece goes away for Christmas. Again.
Post by: Graham C on February 25, 2010, 01:25:10 PM
Great news, have a great time :)


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on February 25, 2010, 03:58:49 PM
Marvellous Maureen, he will love it at Haven.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on February 27, 2010, 07:28:40 PM
Just wondering if there is anyway to print off all Reece's thread as it is like a diary for us. ? Bongo?..


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on February 27, 2010, 11:07:48 PM
Bongo, really need a little help on how to copy whole thread in a quick way. much appreciated if you can assist. If not,,, np just let me know.


Title: Re: Reece goes away for Christmas. Again.
Post by: amcgrath1uk on February 27, 2010, 11:47:57 PM
As soon as I hear from him, I'll let him know about this.


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on February 28, 2010, 12:36:13 AM
Bongo, really need a little help on how to copy whole thread in a quick way. much appreciated if you can assist. If not,,, np just let me know.

Can you copy & paste it into Word Maureen?


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on February 28, 2010, 10:14:57 AM
Doh, silly slow old me just seen the massive print button option, but thanks Tom & Asa. x


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on March 12, 2010, 08:53:25 AM
Just popped in to update those of you that still follow Reece's progress....

Reece's results in, extreme dilation of the bowel, lot worse than last sept when we knew it had started to dilate, needs surgery, which will be discussed on the 22nd.    Veins, which we were really worried about, Manchester said he was down to his last 2, already using one of them, but test showed some of his larger veins are completely blocked but several others can still be used. SEVERAL...much better than we thought, this will also be explained in more detail weeka Monday.

His savings book has been updated to add his interest on and deposit some funds that still remained from past donations before Kev & Chris did their fund raising events, once the old funds are all in, as have been in another account I will scan and send to Kev to show no withdrawals have been made only deposits.

 Thanks all for asking about him.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on March 12, 2010, 09:07:25 AM
Thanks for the update Maureen.  Thinking about you all and hope they get the wee Lad sorted soon.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on March 12, 2010, 09:10:44 AM
Thanks Maureen.

Update us a little more often please, otherwise I may have to put you across my knee.


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on March 12, 2010, 11:53:07 AM
Thanks Maureen.

Update us a little more often please, otherwise I may have to put you across my knee.

I agree with everything in this post, well said Tom. :)up


Title: Re: Reece goes away for Christmas. Again.
Post by: turny on March 12, 2010, 12:19:14 PM
best wishes to reece he is a brave young man x


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on March 12, 2010, 07:30:23 PM
Just popped in to update those of you that still follow Reece's progress....

Reece's results in, extreme dilation of the bowel, lot worse than last sept when we knew it had started to dilate, needs surgery, which will be discussed on the 22nd.    Veins, which we were really worried about, Manchester said he was down to his last 2, already using one of them, but test showed some of his larger veins are completely blocked but several others can still be used. SEVERAL...much better than we thought, this will also be explained in more detail weeka Monday.

His savings book has been updated to add his interest on and deposit some funds that still remained from past donations before Kev & Chris did their fund raising events, once the old funds are all in, as have been in another account I will scan and send to Kev to show no withdrawals have been made only deposits.

 Thanks all for asking about him.

Miixed news, then.

Stay strong Maureen.

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: trafficjam on March 13, 2010, 02:40:19 PM
best wishes to reece he is a brave young man x


+1 


Title: Re: Reece goes away for Christmas. Again.
Post by: Rooky9 on March 19, 2010, 11:22:14 PM
Best wishes Mo.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on March 22, 2010, 06:48:35 PM
Well today we had the long awaited appointment with both Mr Puntis, our new Gastro specialist consultant, and met Reece's new surgeon Ian Sugarman, seems a lovely bloke. Things are a lot better than we thought, they obviously can not definitely say they will ever get Reece free from TPN, but unlike a few months ago when they more or less said they were not sure there was anything they could do for Reece, they think it may not be an impossibility, but defiantly not in the near future, they are going to take it a lot slower than Manchester was, where Reece was pushed to almost starvation, and trust me I mean skeleton like. Possibly this is because Reece has come along fantastically in the 2 months that they have made changes to his TPN calorific amounts and the way they administer it. It is just a lot simpler and easier than it was before.

We knew surgery was going to happen and when we saw the results for ourselves today on screen just how dilated the bowel is we have to wonder in awe just how he copes with the discomfort. It is that big that his belly is very protruding. Leeds wanted to build him up before going in again but with his progress and also the Mr Sugerman says with the discomfort too he hopes to operate in May. He does not know wether he will be able to do the S T E P on him until he opens him up, as where the dilation is it may not be performable due to another vein entering the bowel around the area and he has already lost the other one from the last lot of surgery. So it may be that he will have to taper the dilation therefore removing some of the much needed bowel, and it is not something he does on short gut patients but possibly has no option, he has to make Reece more comfy. Also if he does have to do this it will be unlikely help Reece absorb more food or get him any closer to coming off TPN. He is going to contact Antonino for info on his Bianchi op he performed so he is aware of areas that may be of concern etc.

The veins, yes he has lost 2 / 4 of the main ones which we use to put lines in order for him to go on TPN, but he doesn't feel that we are in a postion where we need to be too concerned as yet.



If the worst happens and we get down to his last 2 veins then he will have no option than to return to Birmingham and go on the small bowel transplant list, which we really do not want to happen as the success rate of surviving the op was , when we were on it last time, around 57% and IF a successful one was performed life expectancy was 5 - 10 yrs. Although these figures have possibly improved as it was 3 years ago we were on it.


His weight is fluctuating between 16.5 and 17 k and we asked today if this is solely from the increased TPN but they seem to think not, they actually now think he may be absorbing something out of the food he eats but not all. So that in it's self is a good sign.

So all in all we are very happy the way the new team are heading. A lot slower and more professional in procedure, we do miss the way we could just phone Antonino and see him asap, but at the end of the day we almost lost him over there too, and the mistakes and slackness of the the whole hospital was far from acceptable. We are absolutely dreading himhaving to go through major surgery again, he has always known what is going on at the hossy, but as he is getting older it is unbelievable how much he knows.

So yes, we do think we have made the right decision in moving him and just want to get May over with.




Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on March 22, 2010, 07:07:15 PM
Overall, it seems very positive to me Maureen.

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on March 22, 2010, 08:09:44 PM
Cheers Tom, we think that too and he is on top form himself apart from tummy, never seen him with so much energy.

BTW, did think twice about updating at such a sad time for Vinny as I know he does read this thread. Our thoughts are constantly with him and his. xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on March 22, 2010, 08:21:07 PM
I'm glad it's all going in the right direction.  Hugs to the wee man and you too!  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on March 22, 2010, 08:24:12 PM
lots of positives there Mo - fingers crossed x


Title: Re: Reece goes away for Christmas. Again.
Post by: ripple11 on March 22, 2010, 08:45:16 PM

 Great to hear you are happy how things are moving forward,.....and Reece is on good form.


Title: Re: Reece goes away for Christmas. Again.
Post by: celtic on March 22, 2010, 09:13:06 PM
Cheers Tom, we think that too and he is on top form himself apart from tummy, never seen him with so much energy.

BTW, did think twice about updating at such a sad time for Vinny as I know he does read this thread. Our thoughts are constantly with him and his. xx

Keep posting Mo, also, see PM i sent you a couple of hours ago.


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on March 22, 2010, 11:39:45 PM
Sounds really positive Maureen, so pleased for the litlle fella.  ;tightend;


 Was good to see you and Darren at the weekend, you are both looking great and of course you are obv still the best poker player in the house.   ;D


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on April 22, 2010, 11:21:13 AM
Reece has been doing very well of late, he has his ups n downs and is almost always in some sort of pain / discomfort due to the large dilation. We just want to get the next op over with but before that we have taken Haven up on the offer of a free holiday so we set off to Gt Yarmouth for a week in May, we really fancied Cornwall but fear that is a little too far to take him.

Our new nurse at Leeds, Gill, is an absolute gem, she rings us all the time and spent almost an hour on the phone with me yesterday organising delivery of all Reece's medical equipment to be delivered to Haven. Haven are also going beyond the call of duty to assist us. She has also contacted Yarmouth hospital to let them know we are in the area and also of his needs.

This will be Reece's first holiday, we took him to Wales last year for 2 days but he wasn't in best of form, so a whole week away will be great for him. He will also be allowed to go into a swimming pool for the first time ever, only for half an hour, then we will have to change his dressing to make it sterile again just in case any water has leaked into his access area for his central line  through his water proof dressing. All in one swimsuit will be need so that he doesn't get the stares due to mass scaring.

Stacey rents privately so therefore has to pay towards her rent herself out of Reece's disability money, we thought we had found her the perfect home, run by agents so there should be no trouble and Reece could finally settle and get a bit of normality in his life, but alas this was not to be the owners, after the 6 month agreement was up, have increased the rent to £595, she cant afford that so she is moving in with us until we can find her another home. OK so they said to us when she handed in her notice there that they would go back on the increase if she stayed another 6 months, but to be honest the jobs just don't get done, Whitegates do their part but the owners always know someone cheaper, or they say with it being a newish house it is still under  guarantee, so she has to wait ages, like at the moment, she is without the boiler, so no hot water or heating and has been since Sunday as they can't fix it allegedly , this is not good especially for Reece. So anyway, home they come,  it will mean shuttling Reece to school the other end of town and plus him being up heaved again, but hey ho worse things happen.

Also Stacey is doing very well, she is on a course at college plus does 2 days charity work with youths, she loves it but i fear she takes on too much what with the op coming up I think she will struggle, but like she says, she wants something behind her, her aim is to become a social worker.

Well hope we get lots of pic's on the holiday that we can share with you all. One last note, his Disney World holiday money that you have all got him will not be used at all for this break. That is all up to date now, apart from the Doyle book money that will be added as and when.

EDIT, she doesn't pay all that herself she does get some help.
Xxxx


Title: Re: Reece goes away for Christmas. Again.
Post by: mondatoo on April 22, 2010, 11:24:28 AM
Hope you have a great trip,look forward to reading updates/pics


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on April 22, 2010, 11:30:30 AM
Cheers Mond, xx


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on April 22, 2010, 12:03:32 PM
a well earned break if ever there was 1. 

 ;hattip; ;hattip; ;hattip; to Gill And Haven well done both.

Have a great time all and just enjoy  ;D ;D ;D ;D ;D ;D


Title: Re: Reece goes away for Christmas. Again.
Post by: Dingdell on April 22, 2010, 12:21:00 PM
Have a lovely time Mo - lost of pics please xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on April 22, 2010, 12:22:25 PM
Have a lovely time Mo - lost of pics please xx

This!  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on April 22, 2010, 12:36:26 PM
Have a lovely time Mo - lost of pics please xx

This!  xx

+ another!


Title: Re: Reece goes away for Christmas. Again.
Post by: technolog on April 22, 2010, 12:55:56 PM
Nice to hear things are going well Maureen and I hope you all have a great holiday.


Title: Re: Reece goes away for Christmas. Again.
Post by: ripple11 on April 22, 2010, 01:17:54 PM

Have a lovely holiday......enjoy!


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on April 22, 2010, 06:46:04 PM
Hope he has the most fantastic time. Looking forward to the report and pics.


Title: Re: Reece goes away for Christmas. Again.
Post by: Rooky9 on April 22, 2010, 07:09:25 PM
 :)up

Send hima roar from me!

x


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on April 28, 2010, 09:01:26 AM
Roar received Rooky9. x

Well they moved in Monday, Reece is very settled, actually enormously happy. Down side is the travelling to & from school, once his statement get sorted out, been refused one twice but now at Leeds the medical team there said there is no way he will not get one, once again it is the local authority not recognising just how serious his condition is with it not being that common. Anyway once that is sorted he would be entitled to home to school transport, but having worked for that department before I started on the trains I am reluctant to let that happen. With us living so far away from his school it would be very likely that Reece would be one of the first to be picked up in a morning and possibly last to be dropped off on a night, thus incurring an even longer day than necessary. For the time being we will stick to doing the school run between us.

He has not got a great appetite still, but that is to be expected with his distension so we try not to push him. Hopefully post op this will improve. I weighed him last night he was 16.9 k then after his TPN free night this am he was 15.9, all fluid I guess.

Anyway, apart from the impending op life is not too bad atm.



Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on April 28, 2010, 11:06:22 AM
Gr8 news Mo  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on April 29, 2010, 11:43:15 AM
The dreaded letter arrived this morning.

The op will be done on the 25th May, he is to go in on the 24th. Like before we still do not know if they will be able to perform the S T E P until they open him, still only been done 5 times in Leeds from what they told us. If not the S T E P it will be tapered, which they do not want to do as it will mean him losing some of the bowel which he has been through so much to gain. Just going to do my best to block it out now until after the holiday as it is making me feel very sad. Anyway, it has to happen poor lad.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on April 29, 2010, 12:41:32 PM
{{{{{HUGS}}}}}


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on April 29, 2010, 12:42:39 PM
everything crossed for the 25th xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on April 29, 2010, 12:58:26 PM
Enjoy the holiday with the family Maureen. Wishing the brave fella all the best for the 25th. X


Title: Re: Reece goes away for Christmas. Again.
Post by: technolog on April 29, 2010, 01:00:48 PM
{{{{{HUGS}}}}}


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on April 30, 2010, 10:39:04 PM
Bugger, just what we didn't want. Tonight could not get the TPN  to run through his veins, alarms constantly going off, spoke to on call nurse and we have increased down stream pressure, but to no avail. , Then i had an idea to raise the pump as high as possible and so far so good. Not ideal but if we can get vein to hold out for holiday .......please let it hold out...want to use my ONE TIME.


Title: Re: Reece goes away for Christmas. Again.
Post by: Colchester Kev on April 30, 2010, 11:07:58 PM
You can have my "one time" token with my love xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 01, 2010, 10:03:20 AM
Not good, had to stop the infusion last night, line blocked or moved, not sure which. He is fine in himself but needs his line so Stacey has just set off to Leeds hossy with him and they are expecting him. They will be trying to use it again if that fails, new line. The tests will take best part of the day so we will follow over this afternoon when Daz gets home from work. Really do not want the line to be renewed as this wll mean he wont be able to go swimming on holiday and he is so looking forward to that for the 1st time ever. Life is so chuffing unfair.


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on May 01, 2010, 01:26:02 PM
Find a convenient cat to kick Maureen. (If not, Daz will have to do) Then, get that chin back up.

XX


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on May 01, 2010, 01:33:47 PM
xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on May 01, 2010, 01:47:14 PM
More cyber hugs coming your way.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 01, 2010, 02:57:34 PM
OK so far line still blocked so they are now contacting surgeons. Looks like a new line will have to be fitted. Can't see it being today, as A, he has eaten and B ,as we know at a push he can wait a couple of days, bloody hell Manchester left him nil by mouth every day for a week ? was it? last time. Plus the children's wards are merging atm, so are the new theatres,So here we go again. Lets just hope they don't do a Manchester on us.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 02, 2010, 01:19:16 AM
 He is home and nil by mouth from now till 2morrow, we have to have him back there for 9 am..so guess a new line is the only answer.


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on May 02, 2010, 02:34:52 AM
thoughts and wishes going out to ya all

best of luck xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on May 02, 2010, 02:53:27 AM
xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Tonji on May 02, 2010, 10:41:25 AM
thoughts and wishes going out to ya all

best of luck xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on May 02, 2010, 01:39:45 PM
Keep the wee man in yer thoughts people.  They're having a tough morning of it and he could do with some good vibes going his way.  Cheers.  xx 


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 02, 2010, 06:48:45 PM
Well what a day, Reece was full of beans this am, pay fighting etc, then bang never ever have i seen someone drop like he did. His blood sugar level hit rock bottom pre op, his eyes were rolling and it was all go to stabilise him. But as always he came fighting back, horrible to here him say I want to die, but he did say it, doubt he really knew what he was saying, but it killed us. Anyway, his op took place, new line into the kneck, comes out of his chest, this is his 14th line or there abouts. Hopefully if all goes well the holiday will still be on, but no swimming. This lad never fails to amaze us.


Title: Re: Reece goes away for Christmas. Again.
Post by: TightEnd on May 02, 2010, 06:50:59 PM
Phew, I think.

Fingers crossed for the holiday too


Title: Re: Reece goes away for Christmas. Again.
Post by: Ginger on May 02, 2010, 07:00:28 PM
As usual I'm totally lost for words when it comes to the bravery that the 3 of you and Reece continue to show. I can't imagine the daily strength it takes.

As always my thoughts, good vibes and love go out to all of you xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 02, 2010, 07:04:14 PM
Ty both, we have no choice, unfortunately I am at times not that strong and tend to get emotional as he goes under. I just never get used to it and do not want to either. I just wish it was  me not him.


Title: Re: Reece goes away for Christmas. Again.
Post by: technolog on May 02, 2010, 07:07:24 PM
Hugs to everyone up there. Keep thinking about that holiday Mo.


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on May 02, 2010, 07:51:47 PM
Strength comes from the heart not our emotions and all of you have huge strong 1's xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on May 02, 2010, 11:53:34 PM
thinking of you all Mo, and fingers crossed for the holiday xx


Title: Re: Reece goes away for Christmas. Again.
Post by: trafficjam on May 03, 2010, 12:51:13 PM
As usual I'm totally lost for words when it comes to the bravery that the 3 of you and Reece continue to show. I can't imagine the daily strength it takes.

As always my thoughts, good vibes and love go out to all of you xxx


Hugs xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on May 03, 2010, 01:38:55 PM
Keep the wee man in yer thoughts people.  They're having a tough morning of it and he could do with some good vibes going his way.  Cheers.  xx 

Well said Laxie. X


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 05, 2010, 07:10:36 PM
The boy has done himself proud this week, fingers crossed we still intend to be going on his hol. Just do not want to think about after it, as this last weekend was bad enough. Will he ever forgive us. Anyway he is on top form, plus getting cheekier by the day.


Title: Re: Reece goes away for Christmas. Again.
Post by: Karabiner on May 05, 2010, 08:51:23 PM
The boy has done himself proud this week, fingers crossed we still intend to be going on his hol. Just do not want to think about after it, as this last weekend was bad enough. Will he ever forgive us. Anyway he is on top form, plus getting cheekier by the day.

Great news Mo, hope he continues in the same vein(urrgh no pun intended honest but I thought i'd leave it there anyway)

xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 05, 2010, 08:53:13 PM
perfect Ralph.x


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on May 05, 2010, 09:48:26 PM
xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 06, 2010, 02:16:25 PM
He is very excited about his little holiday. Marks the days off the calender, down to 2 sleeps. No swimming but can go paddling.


Title: Re: Reece goes away for Christmas. Again.
Post by: TightEnd on May 06, 2010, 02:23:04 PM
remind us where he is off to please.

and pics of course after!


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 06, 2010, 02:27:33 PM
He was given a Haven Caravan, Gt Yarmouth as a treat before his big operation. The hossy have arranged for all medical supplies to be del there along with Blondes translating emails for me it will all run smoothly. First Holiday, apart from 2 days in Wales.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 06, 2010, 02:29:27 PM
So if anyone one lives nr there, let us know as Stacey deserves a few nights out.


Title: Re: Reece goes away for Christmas. Again.
Post by: celtic on May 06, 2010, 02:41:33 PM
So if anyone one lives nr there, let us know as Stacey deserves a few nights out.

Think Cos lives near Great Yarmouth Mo ::)

Hope Reece has a great time.


Title: Re: Reece goes away for Christmas. Again.
Post by: Rooky9 on May 06, 2010, 09:17:49 PM
So if anyone one lives nr there, let us know as Stacey deserves a few nights out.

I'll move!!


Title: Re: Reece goes away for Christmas. Again.
Post by: sofa----king on May 06, 2010, 09:33:11 PM
So if anyone one lives nr there, let us know as Stacey deserves a few nights out.
im single.,.,.,although people say im a double.,.,.,have a great time .,.,x


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 06, 2010, 10:07:43 PM
TYTY...


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on May 06, 2010, 10:31:20 PM
So if anyone one lives nr there, let us know as Stacey deserves a few nights out.

I live quite near, just phone no probs ;)


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on May 07, 2010, 10:34:18 AM
Hope ye have a lovely holiday.  The lot of you truly deserve it.  xx

PS  Trip report and loads of pics when ya get back obv.   ;)


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on May 07, 2010, 11:29:55 AM
meh, London/Great Yarmouth. Pretty much walking distance.

Hope he has a great time.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 07, 2010, 12:23:01 PM
Cheers.x


Title: Re: Reece goes away for Christmas. Again.
Post by: technolog on May 07, 2010, 12:29:37 PM
When are you off Mo? Whenever it is, I hope you all have a great time.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 08, 2010, 05:37:27 PM
Arrived, haveing a chill then he is off out to partyyy. For some reason uploads are disabled on my g phone but I can upload to face book. ?


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on May 08, 2010, 06:46:59 PM
You get them to FB and I'll bring them over here for ya.  Glad you got there safe and sound and have an absolutely fab time!!!


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 08, 2010, 09:43:30 PM
Ty lax. Got some crackin pics of him 2night but on camera not on mobile.  I have just put him on his pn. He is shattered.  Can not belive we 4got his backpk so going tomorrow to see if we can find a back pk that we may be able to customise.  Then he can stay out later. 


Title: Re: Reece goes away for Christmas. Again.
Post by: Nakor on May 08, 2010, 09:46:52 PM
Mo how long you all in Yarmouth?


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 08, 2010, 09:48:26 PM
Till next fri or sat. 


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on May 09, 2010, 09:19:42 AM
(http://i11.photobucket.com/albums/a167/Laxie/Reece/Reece.jpg)


(http://i11.photobucket.com/albums/a167/Laxie/Reece/Reece2.jpg)


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on May 09, 2010, 11:36:00 AM
(http://i11.photobucket.com/albums/a167/Laxie/Reece/Reece.jpg)


(http://i11.photobucket.com/albums/a167/Laxie/Reece/Reece2.jpg)

lol at the size of that ice cream ..


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 11, 2010, 08:14:19 PM
WOW, he is having a ball.....he is loving it. We have done more than we thought he could cope with, tonight me n daz are just home to chill and Reece n Stacey have gone off to entertainment night.I am bloody knackered, not used to going pout so much. Have also put him on his PN every night instead of the 5 / 7 ..to boost him up. Weather , well..coulda been better. Plus would loved to have seen him in the pool here but maybe we will let him go in the paddle area indoors Thurs/ Fri...he can get wet but not submerge n tbh we dont trust him not to, not sure where all this energy and confidence has suddenly appeared from.

 I now have a dongle, Voda phone thingy, payg...and finally got my limited access removed, after much ado, because i only have a visa debit card and not a credit card..had to go into a vodaphone shop. Think I will wait till i get home to upload any piccys as not sure how this dongle gadget works yet.. will take some phone piccys n put on FB which Lax will transfer to here for those of you that want to follow him... xx



Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 17, 2010, 07:35:15 PM
The holiday went great, very tiring and the weather could have been warmer but saying that we packed loads in. Reece really did have a good break.

I was hoping to have posted the pictures by now but I have been laid up poorly since we arrived home. Hopefully tomorrow I may feel more like doing it.

Now count down to the biggy and feel really anxious about it.



Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 18, 2010, 11:12:51 PM
Put a few pic's of Holiday on FB, but I am sooooooo slowwwwwwwwwwwwwwww at resizing on here. So for now here is a short clip, then tomorrow I will try and make an album on Kodak and place a link on here for those of you that still follow. xx

http://www.youtube.com/watch?v=v37WChbOdl0


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on May 18, 2010, 11:20:25 PM
Sooooo glad ye had a good time and hope you're feeling better now.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Tonji on May 19, 2010, 01:04:50 AM
Wonderful clip Mo  :)


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on May 19, 2010, 07:40:04 AM
You could have warned me about Darren's shorts.

I'm having my breakfast FFS!



Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 19, 2010, 08:41:25 AM
LOL Tom.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 21, 2010, 08:39:21 AM
So the weekends here, Stacey has took leave to have a couple of nights away with family before Monday.

Tonight we have Darrens Mum & Dad and Reece fav cousin Shaughna  are around for a BBQ, he loves her coming to play, although she is 2 years older he has a great time with her ( fingers crossed he doesn't do this dance he seems obsessed with doing, ie singing Sexxxeeyyy whilst gyrating his hips. Where the hell he got that from I do not know) and that is what this weekend is about, giving him a good time. These are the hardest ones, seeing him so happy but us knowing what he has to go through next week leaves a constant lump in my throat. Anyway it has to be done. Hopefully if the weather holds we will get him out for walks over the weekend to get as much fresh air as possible before going in on Monday.


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on May 21, 2010, 09:10:37 AM
One day at a time Maureen. We're with you.


Title: Re: Reece goes away for Christmas. Again.
Post by: sofa----king on May 21, 2010, 09:21:45 AM
Glad he's having a good time mo
good luck for next week x


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on May 21, 2010, 10:24:42 AM
One day at a time Maureen. We're with you.

Very much ^^this^^.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Dingdell on May 21, 2010, 11:32:08 AM
One day at a time Maureen. We're with you.

Very much ^^this^^.  xx

Everything crosssed for you, have a lovely weekend xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on May 21, 2010, 12:19:14 PM
One day at a time Maureen. We're with you.

Very much ^^this^^.  xx

Everything crosssed for you, have a lovely weekend xx

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on May 21, 2010, 12:26:31 PM
PMSL at the sexey dance. You could make that a hit on youtube!

Hope the little guy has a great weekend.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 24, 2010, 08:52:47 AM
Made a call to the hossy to see if his bed is ready and as yet they are full. So tenterhooks until they call us.


Title: Re: Reece goes away for Christmas. Again.
Post by: Tonji on May 24, 2010, 09:02:35 AM
All the best this week. Positive vibes.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 24, 2010, 03:19:43 PM
Still no bed......,


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on May 24, 2010, 03:20:43 PM
Oh FFS!!!  Does Reece know he's going in now?


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 24, 2010, 03:27:04 PM
Yes, we have told him it is to make his tummy better but he got worked up and said " Oh no not theatre, tell me Grandma I am not going to theatre". So I couldn't tell him the full extent, off we went to the swings to take his mind off it.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on May 24, 2010, 03:28:06 PM
Ugh.

More cyber hugs on the way.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 24, 2010, 04:28:52 PM
Welllllllllllllllllllllllllllllllllllllllllllllll. Not happy bunnies here. They still have not rang so we rang them. No more closer ..basically we ring you was the reply.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 24, 2010, 05:25:46 PM
Ward has just rung. NO BED tonight. We have to go nil by mouth from 2am and ring them at 6am to see if one will be there for him tomorrow, then we have to get him to Leeds for 07.30am if there is one. Fuming to say hte least. This is not just any op this is a big one, only the 6th time it has been done there and they have been preparing since we left Manchester which was sept. Poor kid.


Title: Re: Reece goes away for Christmas. Again.
Post by: Karabiner on May 24, 2010, 09:58:19 PM
Hang in there Mo & co., funking hard here.

XX


Title: Re: Reece goes away for Christmas. Again.
Post by: sofa----king on May 25, 2010, 01:47:30 PM
AS ABOVE HANG IN THERE MO.,.,

makes me think sometimes,sport relief,children in need etc.,.,where does it all end up/.,.,./.,/.///?


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on May 25, 2010, 09:08:46 PM
Ugh.  Message just in from Mo:

"he is still in theatre it has been harder to get into his tummy due to adhesions. Been roughly 7 hrs now and still no sign of him coming out. We r in bits."

The wee man needs all the good vibes he can get from us today.  This is a big one for him.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: TightEnd on May 25, 2010, 09:14:23 PM
7 hours?

oh boy.

Thinking of you all xx


Title: Re: Reece goes away for Christmas. Again.
Post by: ripple11 on May 25, 2010, 09:17:34 PM
 Everything crossed.


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on May 25, 2010, 09:27:47 PM
urgh.

thinking of you all xx


Title: Re: Reece goes away for Christmas. Again.
Post by: technolog on May 25, 2010, 09:43:40 PM
Everything crossed.

Come on little fella!


Title: Re: Reece goes away for Christmas. Again.
Post by: Karabiner on May 25, 2010, 09:56:25 PM
XX


Title: Re: Reece goes away for Christmas. Again.
Post by: Geo the Sarge on May 25, 2010, 09:57:57 PM
xxxxxx

 you can do this fella

Geo


Title: Re: Reece goes away for Christmas. Again.
Post by: mondatoo on May 26, 2010, 12:27:04 AM
XXXXXXXX


Title: Re: Reece goes away for Christmas. Again.
Post by: sofa----king on May 26, 2010, 01:19:04 AM
Any news ??
Gl reecey boy x


Title: Re: Reece goes away for Christmas. Again.
Post by: suzanne on May 26, 2010, 01:36:07 AM
Hang in there wee man, hes a fighter for sure x


Title: Re: Reece goes away for Christmas. Again.
Post by: Wardonkey on May 26, 2010, 08:13:04 AM
XOX


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on May 26, 2010, 08:29:30 AM
xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on May 26, 2010, 08:34:32 AM
Any news ??
Gl reecey boy x

He was in recovery by 11, but not sure of exact time or details of the op.  Just hope they achieved their goals with it.  Will update once I've heard - if Maureen doesn't get here first.  

Just want to say thanks to everyone for their good luck wishes.  Believe it or not, it does help Mo and family to know you're all behind them.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 26, 2010, 09:03:07 AM
Tough day for Reece in theatre and awful for us too.

Took almost 4 hours to get in the bowel as in was in a very bad way with adhesion's, once in there it was found that the dilation was due to the part of the bowel that had had the Bianchi done in Manchester had sort of looped and blocked. This is why the the dilation was so great but unfortunately it had ruined that part of the bowel and the S T E P bowel lengthening was not able to be performed. Therefore a tapering was done to rid him of the saggy dilated area. Also it was noticed that he had little muscle in the lower tummy, so muscle has been moved around ( not sure how this was done) so Reece will have move strength there. Plus the bowel needed to be re positioned, this was also done and the scar area from Manchester tidied up. My Sugerman is happy with what he has done, he feels that now Reece will be far far more comfortable and able to maybe eat more. Already the lumpy swollen area is flat. He has been in and out of it all night, he has an epidural in amongst other things to ease the pain, but as the theatre staff wheeled away they managed to catch the tube going into his back so not too sure if that is going to help much if it moved. It is tapped to his back so hopefully it is still in position.

Terrible terrible day, do not think we have the strength to go through it again. Thanks for all the responses, never felt so alone as yesterday.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on May 26, 2010, 09:29:59 AM
Oh Honey....soooooo wish I could have been there with ye.  Even if it was just to dish out hugs and get yer coffees.  Loads of us here sending good vibes your way, so hang in there.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Dingdell on May 26, 2010, 11:52:46 AM
Wow - tough day and night for all. The good news is it sounds like the surgeon knows what he is doing, thank goodness.

xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: Karabiner on May 26, 2010, 12:16:59 PM
Thinking of you xx


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on May 26, 2010, 12:24:02 PM
Hope the little man is right as rain as soon as poss.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 26, 2010, 02:15:15 PM
Temp is still up, he has been awake but can't do a lot. The possible cause of the temp could be the epidural may have got infected so we are just waiting on the lady that put it in to come see him. He may have to have it removed and go onto just morphine which will be such a shame.

Dongle strength not that fantastic in here. So hit n miss what I type.


Title: Re: Reece goes away for Christmas. Again.
Post by: mondatoo on May 26, 2010, 02:17:31 PM
Thinking of you all xx


Title: Re: Reece goes away for Christmas. Again.
Post by: sofa----king on May 27, 2010, 12:10:52 AM
just got in after a real long busy fool .,.,shit day all over the country for next to nothing after a few deals went tits up.,.,.and just thought fuk me.,.,.,theres this poor kid going through the mill.,.,it makes my day feel ridiculous.,.,..,
hope he feels a bit better.,.,fingers crossed for him and he is in my thoughts.,.,,poor little fella.,.,.,x.,.x.,x.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on May 27, 2010, 02:22:16 PM
Been a tough morning for our wee man.  This morning his stats were low and they were waiting on the doc to suss out what the trouble is. 

Since then have received a text from Mo to say 'They have just brought the mobile xray to bed as they think a lung may have part collapsed.'

He's seen better days.  Cyber hugs and good vibes on the way.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on May 27, 2010, 03:52:05 PM
urgh.  everything crossed here xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: Tonji on May 27, 2010, 08:41:57 PM
urgh.  everything crossed here xxx

indeed, xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 27, 2010, 09:01:19 PM
Another long day for the hero. Epidural has had to come out, but the morphine is still going on plus lots of other things to fight infections and relieve pain etc. Still nil by mouth, has been since Monday. He is only allowed the sponge lolly dipped in sterile water to wet his mouth.

He is struggling with his breathing, but the xray does not show the suspected collapsed lung but does show some shadow which could be the on set of an infection so that will be kept an eye on. He is as comfy as can be expected but we did get a smile today as a magician came to put on a little show for him at his bed. It hurt him to lol, so he did have to keep looking away in case he lol'd too much.

Anyway, another day over, fingers crossed he shows more improvement tomorrow. We are now home and Stacey has returned to sleep the night with him after her having a rest afternoon at home.


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on May 27, 2010, 10:10:09 PM
Best wishes for a speedy recovery. Thinking of the brave soldier.


Title: Re: Reece goes away for Christmas. Again.
Post by: sofa----king on May 30, 2010, 03:11:03 AM
Any news on the little fella??


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 30, 2010, 06:16:26 PM
Out of high dependency, but in pain a lot as stopped poohing again. This afternoon he also looks dehydrated so his blood sugars were done and read 2 so back on extra drips on top of TPN. He is not a happy bunny, constantly cry " oh no oh no ".Just not him to moan at all.


Title: Re: Reece goes away for Christmas. Again.
Post by: technolog on May 30, 2010, 06:20:04 PM
Must be heartbreaking Mo. Hope the little lad's feeling a lot better very soon xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 30, 2010, 06:35:43 PM
Tx, he is improving just slowly, but early days yet. We hoped today we would see more improvement but then we have to think he is only 5 days post op so is doing remarkably well, just hurts like heck to see him in pain.


Title: Re: Reece goes away for Christmas. Again.
Post by: TightEnd on May 30, 2010, 08:51:17 PM
Keep going Mo, must be very tough but he's such a fighter!


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 31, 2010, 10:42:07 PM
Possibly back to theatre tomorrow.


Title: Re: Reece goes away for Christmas. Again.
Post by: trafficjam on May 31, 2010, 10:53:42 PM
Hugs xx


Title: Re: Reece goes away for Christmas. Again.
Post by: TightEnd on May 31, 2010, 10:54:39 PM
Why is this maureen?


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 31, 2010, 11:00:21 PM
Since the op his has been crying in pain when either the nurse or us put him on his TPN, they just kept saying it is just him confused from op, but tonight it was too bad to flush even so no /tpn tonight, looks like the new line is not in correctly, so xray in the morning to see what is going on then looks highly likely a new line which is the last thing he needs to go through plus it means another vein used in just under 4 weeks. Terrible, I want a full report on why if it does need replacing. His veins are so precious.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on May 31, 2010, 11:03:10 PM
Ugh.  Will be thinking of him and keeping everything crossed for tomorrow.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on June 01, 2010, 01:24:32 AM
Ugh.  Will be thinking of him and keeping everything crossed for tomorrow.  xx

same here xx


Title: Re: Reece goes away for Christmas. Again.
Post by: sofa----king on June 01, 2010, 09:18:09 AM
fingers crossed for him.,.,poor little boy.,.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 01, 2010, 09:52:10 AM
Not gone nil by mouth so waiting on the xray to be done first to see if a new line is needed.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 01, 2010, 01:50:18 PM
Weeeeeeee linogram and x ray clear not fractured so no op needed. What a star. Plus bowel has started to work again and he has eaten today.  Bloody hero he is.


Title: Re: Reece goes away for Christmas. Again.
Post by: TightEnd on June 01, 2010, 01:52:04 PM
Weeeeeeee linogram and x ray clear not fractured so no op needed. What a star. Plus bowel has started to work again and he has eaten today.  Bloody hero he is.

He is too. Nice to hear some good news


Title: Re: Reece goes away for Christmas. Again.
Post by: trafficjam on June 01, 2010, 02:08:29 PM
Great news, what that little lad has been through makes me feel ashamed when I complain I have a cold. Hugs and xx


Title: Re: Reece goes away for Christmas. Again.
Post by: outragous76 on June 01, 2010, 02:10:39 PM
Great news



Title: Re: Reece goes away for Christmas. Again.
Post by: sofa----king on June 01, 2010, 02:11:11 PM
Made my day xxxx


Title: Re: Reece goes away for Christmas. Again.
Post by: Eck on June 01, 2010, 02:30:03 PM
 :) :) :)


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on June 01, 2010, 02:48:33 PM
That's abso brilliant news!  Hugs all around xx


Title: Re: Reece goes away for Christmas. Again.
Post by: mondatoo on June 01, 2010, 03:03:45 PM
Great to hear better news xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on June 01, 2010, 04:02:53 PM
 ;D


Title: Re: Reece goes away for Christmas. Again.
Post by: Acidmouse on June 01, 2010, 04:31:18 PM
weeeeeeeeeeeee awsome news, :)


Title: Re: Reece goes away for Christmas. Again.
Post by: Wardonkey on June 01, 2010, 04:54:40 PM
 *g


Title: Re: Reece goes away for Christmas. Again.
Post by: Karabiner on June 01, 2010, 04:58:37 PM
 ;woohoo;


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on June 01, 2010, 06:59:48 PM
Weeeeeeee linogram and x ray clear not fractured so no op needed. What a star. Plus bowel has started to work again and he has eaten today.  Bloody hero he is.

Fantastic news.   ;yippee;


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on June 01, 2010, 07:02:56 PM
fantastic news xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: ripple11 on June 01, 2010, 08:20:37 PM
Weeeeeeee linogram and x ray clear not fractured so no op needed. What a star. Plus bowel has started to work again and he has eaten today.  Bloody hero he is.

 :)up


Title: Re: Reece goes away for Christmas. Again.
Post by: technolog on June 01, 2010, 09:18:07 PM
fantastic news xxx

x


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 01, 2010, 09:33:37 PM
Tx all, means a lot. x

He is in top form today and wants to come home. His sense of humour has returned a little, still in pain but that is to be expected, heck this time last week he was still in op. Amazing how he has come along today, tried walking a bit but bent over like an old man and hurts a lot but he walked to the play room and back plus ate his pasta lunch then THREE jaffa cakes. Tea, well he tried plus had a small ice cream.

Can't believe what an emotional roller coaster it has been again. He so deserves to get to Disney Land, lets hope we can make his dream come true.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 01, 2010, 09:41:58 PM
Oh yes, they are keeping their eye on the line, they say it might just be from all the surgery and him getting tensed up when we flush it expecting it to hurt. There is a stitch that has got a bit stuck from when he had it in 3/4 weeks back so just a waiting game, as long as it is not fractured or blocked it should be OK.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 02, 2010, 01:41:45 PM
Hard to believe but I am now picking Reece & Stacey up at the hospital. HE IS COMING HOME !!!!!!


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on June 02, 2010, 01:43:04 PM
Hard to believe but I am now picking Reece & Stacey up at the hospital. HE IS COMING HOME !!!!!!
WIIIIIIIIIIIIIIII


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on June 02, 2010, 01:47:19 PM
Hard to believe but I am now picking Reece & Stacey up at the hospital. HE IS COMING HOME !!!!!!

excellent!


Title: Re: Reece goes away for Christmas. Again.
Post by: TightEnd on June 02, 2010, 01:48:07 PM
! Superb. Hopefully you'll spoil him rotten


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 02, 2010, 01:51:28 PM
Me spoil him never..........


Title: Re: Reece goes away for Christmas. Again.
Post by: trafficjam on June 02, 2010, 02:50:36 PM
Great news xx


Title: Re: Reece goes away for Christmas. Again.
Post by: mondatoo on June 02, 2010, 03:11:11 PM
Good to hear things are much better,really pleased for you


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on June 02, 2010, 03:44:12 PM
Oh man - that's GREAT NEWS!!!  I'm so happy for ye.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 02, 2010, 03:56:12 PM
Just chillin watching Garfield movie with Grandad, stacey has gone out for a much deserved spin in the car on her own, do her good. He also is walking a little more, trying to impress us I think, but it feels good to have him home, we really did not expect it this soon. He never fails to amaze  me.


Title: Re: Reece goes away for Christmas. Again.
Post by: technolog on June 02, 2010, 06:17:30 PM
Very happy for you Mo, great news!


Title: Re: Reece goes away for Christmas. Again.
Post by: Wardonkey on June 02, 2010, 10:40:27 PM
 ;yippee;


Title: Re: Reece goes away for Christmas. Again.
Post by: sofa----king on June 04, 2010, 09:52:58 PM
Any news on the little fella??,.,?


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 05, 2010, 11:22:22 AM
He's doing great James, although he has gone off food again and is looking very thin under his clothes. He only weighs 15 k again but hopefully he will pick up soon.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on June 05, 2010, 01:26:15 PM
Fingers crossed Mo.  Maybe a stupid question, but is there any sort of pattern to when he goes off the food?



Title: Re: Reece goes away for Christmas. Again.
Post by: sofa----king on June 05, 2010, 01:35:49 PM
He's doing great James, although he has gone off food again and is looking very thin under his clothes. He only weighs 15 k again but hopefully he will pick up soon.
thats great to hear.,.,swift recovery now.,.,x


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on June 07, 2010, 01:20:06 AM
Just chillin watching Garfield movie with Grandad, stacey has gone out for a much deserved spin in the car on her own, do her good. He also is walking a little more, trying to impress us I think, but it feels good to have him home, we really did not expect it this soon. He never fails to amaze meall of us.

FOP X


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 13, 2010, 03:10:11 PM
An afternoon at the seaside yesterday, but he wasn't on top form like he has been for the last week, still had a nice day.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 13, 2010, 03:11:27 PM
.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 13, 2010, 03:12:29 PM
His hay fever seems to be back, he was doing great on food Thur / Fri then bang, since Saturday not eating.


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on June 13, 2010, 03:22:03 PM
wow they still do donkey rides :) tops pics Mo

He'll be back to his old self soon hun xx

does he take anything for his hay fever?


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 14, 2010, 11:33:09 AM
Been granted home tutoring for Reece which starts today, now actually, he is so excited.


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on June 14, 2010, 11:34:58 AM
Been granted home tutoring for Reece which starts today, now actually, he is so excited.

He'll be teaching them if they're not careful.

Great news Maureen.


Title: Re: Reece goes away for Christmas. Again.
Post by: TightEnd on June 14, 2010, 11:37:39 AM
Excellent stuff

Just tell Darren not to put the Rocky films on while the tutor is there, and all will be well


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on June 14, 2010, 11:37:50 AM
Good news Mo.

Put some magazines in the post this morning. Let me know if there are any titles he likes that I might of forgot to put in.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 14, 2010, 11:42:12 AM
Tx Cos, very grateful. Xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 14, 2010, 11:42:28 AM
Excellent stuff

Just tell Darren not to put the Rocky films on while the tutor is there, and all will be well

LOL. x


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 14, 2010, 11:44:15 AM
Been granted home tutoring for Reece which starts today, now actually, he is so excited.

He'll be teaching them if they're not careful.

Great news Maureen.

LOL, x.  We went on a ride at Brid on Saturday Tom, it was a kiddy one that had no buzz whatsoever, whilst going round Reece turned to me shaking his head and said " This is so humiliating" No word of alie, where he gets it from I don't know.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on June 14, 2010, 11:54:26 AM
Been granted home tutoring for Reece which starts today, now actually, he is so excited.

He'll be teaching them if they're not careful.

Great news Maureen.

LOL, x.  We went on a ride at Brid on Saturday Tom, it was a kiddy one that had no buzz whatsoever, whilst going round Reece turned to me shaking his head and said " This is so humiliating" No word of alie, where he gets it from I don't know.

 rotflmfao  He's such a cutie.  Delighted the home tutoring came through for him!


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 14, 2010, 06:24:18 PM
So the teacher and the lady that sorts out hours etc came today, he has been granted 5 hours a week which will be 1.15 hr pd over 4 days, not sure if this is good or not as no knowledge in what home tutoring usually get, they did say that they only usually teach behavioural children so hopefully this will be a pleasant change for her.


Title: Re: Reece goes away for Christmas. Again.
Post by: sofa----king on June 14, 2010, 10:14:24 PM
So the teacher and the lady that sorts out hours etc came today, he has been granted 5 hours a week which will be 1.15 hr pd over 4 days, not sure if this is good or not as no knowledge in what home tutoring usually get, they did say that they only usually teach behavioural children so hopefully this will be a pleasant change for her.

great news mo wd.,.,.,is she single.,.,any pics.,.,lol


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 15, 2010, 11:20:30 AM
His face was a picture when the postman came with a parcel addressed to Master Reece " T Rex" Snape. His eyes lit up so much, TYTYTY Cos very much. He loves them. He said, how do you know that he loved the Simpsons, lol, news to us too lol. "Look what he's got for me he keeps shouting". Things like this make our day. Xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on June 15, 2010, 11:27:47 AM
His face was a picture when the postman came with a parcel addressed to Master Reece " T Rex" Snape. His eyes lit up so much, TYTYTY Cos very much. He loves them. He said, how do you know that he loved the Simpsons, lol, news to us too lol. "Look what he's got for me he keeps shouting". Things like this make our day. Xxx

Just hearing that made my day too Mo!

I've just been on the phone to our rep at Simpsons comics and asked them to send me as many different copies as possible. Ask the little fella what mags he likes and I'll do the same for other titles.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 15, 2010, 11:41:01 AM
Thanks Cos..he asked me to type can you try for Spiderman, lol, that's his words. Xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: mondatoo on June 15, 2010, 01:47:54 PM
Top man Cos


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on June 15, 2010, 07:42:38 PM
Top man Cos

Indeed he is.


Title: Re: Reece goes away for Christmas. Again.
Post by: TightEnd on June 23, 2010, 10:18:25 AM
I had to go to Leeds last night and very kindly Maureen invited me for tea on the way up.

Now that Reece is a cheeky lad: was on great form!


We've just eaten and I have learnt that Reece love Yorkshire puddings. Down they go, one after one. I'm left with Reece while Maureen goes into the kitchen to clear away and get pudding.

In comes Chocolate Cake and Ice Cream for Reece.

One bite.

A second bite.

Then he looks across at me, lowers his eyes and whispers

"Don't tell anyone"

and pops his piece of Chocolate cake inside a Yorkshire pudding left on a serving dish in the middle of a table, looks at me again, takes a bite and smiles


Great lad, and good to see him doing so well.


Title: Re: Reece goes away for Christmas. Again.
Post by: mondatoo on June 23, 2010, 10:23:17 AM
I had to go to Leeds last night and very kindly Maureen invited me for tea on the way up.

Now that Reece is a cheeky lad: was on great form!


We've just eaten and I have learnt that Reece love Yorkshire puddings. Down they go, one after one. I'm left with Reece while Maureen goes into the kitchen to clear away and get pudding.

In comes Chocolate Cake and Ice Cream for Reece.

One bite.

A second bite.

Then he looks across at me, lowers his eyes and whispers

"Don't tell anyone"

and pops his piece of Chocolate cake inside a Yorkshire pudding left on a serving dish in the middle of a table, looks at me again, takes a bite and smiles


Great lad, and good to see him doing so well.

Tank wouldn't make this mistake and that's why he's Claw's cleverest friend,you need to buck your ideas up matey.

Oh and great story,I lol'd at the choc pudding with yorkshire puds.Something tells me he may not still like that when he's older.Yorkshire puddings are by far the best part of a dinner,got to be homemade though.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 23, 2010, 11:40:08 AM
It was a pleasure to have you Richard ty for coming. X


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on June 23, 2010, 04:04:07 PM
Great tale, glad to hear Reece is on form.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 03, 2010, 09:45:13 PM
Can not remember if I shared the pics from when SofaKing spoilt us, but can only find these ones.

http://www.kodakgallery.co.uk/BrowsePhotos.jsp?collid=9221743641233&UV=175924688276_3209643641233&cm_ven=ptnr_kes&cm_cat=Droid&cm_pla=web&cm_ite=uploaded&sourceid=670087587503


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 03, 2010, 10:00:28 PM
Ahh found some more. This belongs here.

http://blondepoker.com/forum/index.php?topic=41148.30


Title: Re: Reece goes away for Christmas. Again.
Post by: sofa----king on July 04, 2010, 12:02:46 AM
went spearing salmon i the local river.,.,with niall tody with his new toy.,.he thinks hes robin hood.,.,
we were sososo close going again tomorrow heres a pic of him mo hes getting huge hes 13 next week
 size 12 feet.,.,.,5  foot 11 and 12 years old i think thats strange.,.,.,
here a pic
btw have you seen the pics with you and darren on the speed boat in cyprus?
i seen them on my pc the other week i will have a look now for them...


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 04, 2010, 12:16:21 AM
went spearing salmon i the local river.,.,with niall tody with his new toy.,.he thinks hes robin hood.,.,
we were sososo close going again tomorrow heres a pic of him mo hes getting huge hes 13 next week
 size 12 feet.,.,.,5  foot 11 and 12 years old i think thats strange.,.,.,
here a pic
btw have you seen the pics with you and darren on the speed boat in cyprus?
i seen them on my pc the other week i will have a look now for them...

Yes see the above quote re speed boat.


Bloody Hell take a look at Niall......omg he is growing up way too fast. Whens he coming to see me?


Title: Re: Reece goes away for Christmas. Again.
Post by: sofa----king on July 04, 2010, 12:16:30 AM
ahhh i just seen the pics of you on the speed boat.,.,made me lol again.,.,.,.,

that bow that niall is holding is actually 6 foot .,.,lol


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 04, 2010, 12:19:19 AM
ahhh i just seen the pics of you on the speed boat.,.,made me lol again.,.,.,.,

that bow that niall is holding is actually 6 foot .,.,lol

GFYS


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 04, 2010, 12:20:04 AM
Loved it, was reminiscing. xx


Title: Re: Reece goes away for Christmas. Again.
Post by: sofa----king on July 04, 2010, 12:20:27 AM
hes just watching con air with his eyes closed.,.,
he asked how you and thingy were (darren lol)  and how was little reece.,???.,
hes a good kid.,.,.,i got him a pack of razors and all man stuff for his 13 birthday.,.,was gonna get him a pack of condoms but his mother would kill me lol (joke)


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 04, 2010, 12:20:49 AM
went spearing salmon i the local river.,.,with niall tody with his new toy.,.he thinks hes robin hood.,.,
we were sososo close going again tomorrow heres a pic of him mo hes getting huge hes 13 next week
 size 12 feet.,.,.,5  foot 11 and 12 years old i think thats strange.,.,.,
here a pic
btw have you seen the pics with you and darren on the speed boat in cyprus?
i seen them on my pc the other week i will have a look now for them...
He's the spit James.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 04, 2010, 12:22:11 AM
Daz wants him up here to see if he has improved on his cards.


Title: Re: Reece goes away for Christmas. Again.
Post by: sofa----king on July 04, 2010, 12:33:47 AM
Daz wants him up here to see if he has improved on his cards.
you got no chance he cheats like fook.,.,.,.,.,.,got a few weeks away planned hes fishing mad atm.,.,all the gear and no idea mind.,,.,.,
the last few weeks we been going down the river and the salmon in there are huge 15-20lbs.,.,so we have tried every bait ..,every type of rod.,.,to no avail .,.,so i bought him.,.,(ok and me)bow and arrow stuff.,.,we went today and we nearly got 4 but the arrows were not pointy enough.,.,been down my mates joinery shop teatime messing about fixing nails into the ends of the arrows.,.,fuk me youd kill a elephant with them.,.,tomorrow we will have salmon for tea.,.,pics will follow ofcourse.,.,
he loves being out in the wild camping/fishing/ect,.,he not cruel mind he wouldnt shoot birds etc.,.,but hes so desperate for one of these salmons.,.,mind you i am aswell lol.,.,.
i promise pics tomorrow 100%.,.,.,.,.,.,a few people told me that the balifs will get us.,.,.,ahhh fuk em.,.,.,


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 04, 2010, 12:47:51 AM
Will look 4ward to tomorrow.


Title: Re: Reece goes away for Christmas. Again.
Post by: sofa----king on July 05, 2010, 03:57:57 AM
Will look 4ward to tomorrow.

rain stopped play.,.,.this week 4 sure.,.,


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 27, 2010, 08:51:09 PM
Amongst all the doom n gloom we have some good news.

Reece went to his follow up appointment this week from his big op, but before the op and when we first transferred to Leeds we were given the news that they didn't think there was a lot they could do as they thought Reece would never ween from TPN, ie, start absorbing  food naturally, this was such a hard time for us and a lot to come to terms with as we also now his veins are limited for central lines. But hey ho, post op, they are astounded with his progress, he looks and feels the best he has ever done in his life, and next week we start to decrease the TPN, so he will drop to 5 nights per week. Fingers crossed for him that he will maintain weight, he has to do it this time. Leeds have made his and our lives so much easier, long may it continue.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on July 27, 2010, 08:53:24 PM

Excellent news Maureen, I'm delighted.

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on July 27, 2010, 08:54:40 PM
Amongst all the doom n gloom we have some good news.

Reece went to his follow up appointment this week from his big op, but before the op and when we first transferred to Leeds we were given the news that they didn't think there was a lot they could do as they thought Reece would never ween from TPN, ie, start absorbing  food naturally, this was such a hard time for us and a lot to come to terms with as we also now his veins are limited for central lines. But hey ho, post op, they are astounded with his progress, he looks and feels the best he has ever done in his life, and next week we start to decrease the TPN, so he will drop to 5 nights per week. Fingers crossed for him that he will maintain weight, he has to do it this time. Leeds have made his and our lives so much easier, long may it continue.

bendigedig xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on July 27, 2010, 09:05:36 PM
fantastic news Mo xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on July 27, 2010, 09:10:53 PM
Fabulous news Maureen.

Got any recent Reecy pics?


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on July 27, 2010, 09:11:16 PM
Some good news around the place!

Brilliant!


Title: Re: Reece goes away for Christmas. Again.
Post by: technolog on July 27, 2010, 09:11:40 PM
fantastic news Mo xxx

:)


Title: Re: Reece goes away for Christmas. Again.
Post by: bobby1 on July 27, 2010, 09:11:55 PM
all the best.

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 27, 2010, 09:12:18 PM
Fabulous news Maureen.

Got any recent Reecy pics?

I have Tom yes, will post some tomorrow. He looks bloody great.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on July 27, 2010, 09:14:43 PM
That is such excellent news Mo!!!  Abso delighted for ye and keeping fingers crossed.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: mondatoo on July 27, 2010, 09:18:28 PM
Really pleased to here things are getting better for Reece


Title: Re: Reece goes away for Christmas. Again.
Post by: Dingdell on July 27, 2010, 09:22:01 PM
Really pleased to here things are getting better for Reece

Lovely news Maureen xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Tonji on July 27, 2010, 11:05:18 PM
Just tremendous news  :)up


Title: Re: Reece goes away for Christmas. Again.
Post by: trafficjam on July 28, 2010, 01:40:12 AM
Great News - what a little fighter x


Title: Re: Reece goes away for Christmas. Again.
Post by: Wardonkey on July 28, 2010, 03:54:34 AM
Good news, thanks Mo.

 :)


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on July 28, 2010, 08:52:39 PM
Brilliant news Wp little fella.


Title: Re: Reece goes away for Christmas. Again.
Post by: Snatiramas on July 28, 2010, 09:52:39 PM
Great News - what a little fighter x

This!!!


Title: Re: Reece goes away for Christmas. Again.
Post by: Harmony26 on July 29, 2010, 02:11:52 AM
Delighted to hear this news Maureen!  Take care all of you.

B & H


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 29, 2010, 06:27:17 PM
Here we go Tom.

http://www.kodakgallery.co.uk/BrowsePhotos.jsp?collid=1357981351233&UV=129840322671_3119981351233&cm_ven=ptnr_kes&cm_cat=Droid&cm_pla=web&cm_ite=uploaded&sourceid=670087587503


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 29, 2010, 06:31:11 PM
http://www.kodakgallery.co.uk/BrowsePhotos.jsp?collid=5362091351233&UV=129840322671_3119981351233&cm_ven=ptnr_kes&cm_cat=Droid&cm_pla=web&cm_ite=uploaded&sourceid=670087587503


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on July 29, 2010, 06:57:04 PM
wiiiiiiiiiiiiii

was feeling pretty peeved due to just reading the big issue on here but what a way to turn the emotions around

gr8 news Mo and all xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on July 29, 2010, 06:58:43 PM
Looking really good xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 29, 2010, 07:01:00 PM
Ty He is looking good and he isa proper boy now, full of fighting energy, constantly on the go. NEVER seen him as good as this.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on July 29, 2010, 07:05:45 PM
He looks excellent!  What day next week do the meds get lowered?


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on July 29, 2010, 07:09:36 PM
Blimey Maureen, what a change. He looks fantastic.

I wouldn't have known him if I passed him in the street. Isn't that wonderful?

I'm filling up here.....


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on July 29, 2010, 07:09:44 PM
Ty He is looking good and he is a proper boy now, full of fighting energy, constantly on the go. NEVER seen him as good as this.

and don't forget ALL of you have to take untold joy due to the love and care that everyone who has helped the little fella along the way,and will continue with it all the way to the joyful end

 ;tightend; ;tightend; ;tightend;

still amazes the strength in depth that has been shown across the forum toward the little fella,

sod the bad news and wiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiii to the good


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on July 29, 2010, 07:11:45 PM
http://www.kodakgallery.co.uk/PhotoView.jsp?&localeid=en_GB&collid=6345977950233.5362091351233.1280426278088&photoid=4682491351233&folderid=0&view=1&page=&sort_order=&albumsperpage=&navfolderid=2010

next stop Linekers JOB


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 29, 2010, 07:33:08 PM
He looks excellent!  What day next week do the meds get lowered?

Two nights off so Saturday is one, then either tues or wed..


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 29, 2010, 07:36:32 PM
Blimey Maureen, what a change. He looks fantastic.

I wouldn't have known him if I passed him in the street. Isn't that wonderful?

I'm filling up here.....

Total change Tom, not joking no one would ever belive he has gone through what he has. Still like you always told me, one day at a time, trying not to build my hopes up too high but Leeds will be taking it much slower.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 30, 2010, 10:48:31 AM
he's certainly come a long way...

 http://www.kodakgallery.co.uk/BrowsePhotos.jsp?collid=5796827351233&UV=841395749108_7715747351233&cm_ven=ptnr_kes&cm_cat=Droid&cm_pla=web&cm_ite=uploaded&sourceid=670087587503


Title: Re: Reece goes away for Christmas. Again.
Post by: ripple11 on July 30, 2010, 11:33:26 AM

fantastic photos.....great to see :)up


Title: Re: Reece goes away for Christmas. Again.
Post by: Snatiramas on July 30, 2010, 11:54:03 AM
What a star!!


Title: Re: Reece goes away for Christmas. Again.
Post by: Dingdell on July 30, 2010, 11:57:22 AM
Amazing how much he has filled out - looks great! Fingers crossed Maureen xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on July 30, 2010, 12:06:35 PM

Never in doubt.

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: taximan007 on July 30, 2010, 08:37:57 PM
This thread puts so many things into perspective!

Onwards and upwards. Great pics Maureen thank you.


Title: Re: Reece goes away for Christmas. Again.
Post by: Karabiner on July 31, 2010, 12:19:04 AM
Blimey Maureen, what a change. He looks fantastic.

I wouldn't have known him if I passed him in the street. Isn't that wonderful?

I'm filling up here.....

Absolutely sensational, me too..


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 31, 2010, 12:21:52 AM
Leeds are doing a cracking job, I really think we made the right decision, easy to say now i guess.


Title: Re: Reece goes away for Christmas. Again.
Post by: sofa----king on August 01, 2010, 04:44:24 PM
Hi mo wow wow wow he looks a diff boy
great to see
just caught up great news xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on August 10, 2010, 05:49:11 PM
 Can everyone who I know tonight give a thought to Reece's friend Ishmil, he was born with Reece and has the same condition, gone through so much with him, but he is in critical failure today, his outlook is terrible. 1 pray, or 1candle, anything u wish to do please do. This is so awful, whilst Reece is upstaires fighting with Darren on the bed, his buddy Ishmil is fighting for his life.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on August 10, 2010, 05:50:16 PM
Ugh.  Will be thinking of him Mo.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: technolog on August 10, 2010, 06:10:30 PM
Ugh.  Will be thinking of him Mo.  xx

+1


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on August 10, 2010, 06:58:05 PM
Thanks Laxie...


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on August 10, 2010, 06:58:25 PM
n Tech


Title: Re: Reece goes away for Christmas. Again.
Post by: The_duke on August 10, 2010, 07:49:52 PM
This little house is in prayer mode.......


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on August 11, 2010, 02:13:57 PM
Can everyone who I know tonight give a thought to Reece's friend Ishmil, he was born with Reece and has the same condition, gone through so much with him, but he is in critical failure today, his outlook is terrible. 1 pray, or 1candle, anything u wish to do please do. This is so awful, whilst Reece is upstaires fighting with Darren on the bed, his buddy Ishmil is fighting for his life.

Any news on Ishmil, Maureen?


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on August 11, 2010, 02:15:59 PM
None today Tony, we are just waiting for Shamin, his mum to let us know, she said she would if there is any change. It will be so hard for her right now.


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on August 11, 2010, 02:19:32 PM
funking for him


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on August 11, 2010, 03:06:46 PM
 ;pokergods;


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on August 11, 2010, 04:19:30 PM
Positive thoughts for the little fella.


Title: Re: Reece goes away for Christmas. Again.
Post by: Emma-bet365 on August 11, 2010, 04:24:21 PM
Positive thoughts for the little fella.

+1 x


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on August 11, 2010, 06:41:54 PM
Positive thoughts for the little fella.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on August 13, 2010, 07:56:07 PM
Finally got to take Reece swimming for the first time today, albeit only 30 mins due to having to change his dressings. I have a few pic's but i have to resize them to post on here, they are on my Facebook though.


Title: Re: Reece goes away for Christmas. Again.
Post by: pokerram on August 13, 2010, 08:13:57 PM
not been on here for a bit but thats great news send our love x


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on August 13, 2010, 08:28:38 PM
just seen the pics on facebook Maureen - looks like he had a great time xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on August 13, 2010, 08:31:41 PM
xx


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on August 13, 2010, 09:41:33 PM
Sometimes I don't know what to say, but I'm here all the same.

GL to Reeec's friend.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on August 13, 2010, 09:44:49 PM
Sometimes I don't know what to say, but I'm here all the same.

GL to Reeec's friend.

So much contrast Tom, as you well know. xxxx


Title: Re: Reece goes away for Christmas. Again.
Post by: sofa----king on August 14, 2010, 11:48:56 AM
good vibes to reeces mate hope hes a little fighter like reece,,,,.,.,.,.,

so glad to hear reece is doing well always makes me smile to see hes getting better and stronger as time goes on.,.,.,xx


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on September 03, 2010, 10:19:38 AM

Maureen - check your PM's please. Some excellent news awaits......


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on September 03, 2010, 01:22:23 PM

Maureen - check your PM's please. Some excellent news awaits......

 ;applause; ;applause; :)up


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on September 03, 2010, 03:07:37 PM

Maureen - check your PM's please. Some excellent news awaits......

Oh Boy, it really was excellent.

A very kind Blonde member who wishes to remain anon has very kindly donated £500 to Reece which is going into his holiday fund.

How do we go about thanking you for this Mr Anon I do not know but from the bottom of our hearts THANK YOU. You are a very kind and thoughtful person. XXXXXX

To us that is a very large amount of money which puts Reece one step closer to reaching his dream holiday. All he ever talks about is ...when I go to Disney World....

The hero himself is doing remarkably well. He remains on TPN but is now down to 5 nights per week. His weight lingers around 16.6 k's which to us is around 2.5 stone I think. Not massive but he looks really well. Leeds are dropping his nights very slowly where as Manchester dropped them rapidly which resulted in him going to near skeleton and so weak he couldn't lift himself up, so we much prefer this way.

He returns to school on Monday, much to his dismay, he really does not want to go.

He is a comical as ever and comes out with such amazing things still that he really shouldn't know about, scary really.

At the moment they both live with us as Stacey still has to find a new home for the two of them which is not proving easy plus we move in October to a smaller place so it is going to be a real challenge.

I think that this period is almost as easy as we have ever had it with regards to Reece's health, and the best that Reece has ever felt. Touch wood, he has not had to be admitted to the ward for so long we can almost feel we are having a normal life. The results from his major op in March are still good, his tummy has not dilated again and we no longer have to drain excess fluid off it god knows how many times a day. He has ceased being sick, which he used to do numerous times a day, it's about a year since he had to wear a nappy in bed which we were told he would most likely wear one for for a good few years more. So he controls his bowel remarkably well to say it is so short. He gets up about twice a night to poo, remember he doesn't poo stools, just water so this is quite an achievement. We have a large potty in his room so he doesn't have to walk with his machine to the bathroom, he would of course but I don't think it fair on him to do that, it is bad enough he has to have his sleep disturbed every night but he never ever moans. He has gone from being on about twenty on meds a day at Manchester to non here. So do I think we made the right decision on moving him, well I think we can safely say the answer is very much a YES.

Once again, Thank you so much for thinking of us Mr Anon. XXXXXXX


Title: Re: Reece goes away for Christmas. Again.
Post by: TheChipPrince on September 03, 2010, 03:09:38 PM
 ;tightend;  to Mr. Anon.


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on September 03, 2010, 03:10:50 PM
so glad to hear how well Reece is doing, and a fabulous gesture from anonymous ;applause;


Title: Re: Reece goes away for Christmas. Again.
Post by: TightEnd on September 03, 2010, 03:12:20 PM
so glad to hear how well Reece is doing, and a fabulous gesture from anonymous ;applause;

exactly this.



Title: Re: Reece goes away for Christmas. Again.
Post by: Wardonkey on September 03, 2010, 03:20:56 PM
so glad to hear how well Reece is doing, and a fabulous gesture from anonymous ;applause;

exactly this.



 *g


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on September 03, 2010, 05:06:25 PM
so glad to hear how well Reece is doing, and a fabulous gesture from anonymous ;applause;

exactly this.



 *g

Blimey!  +1 and then some!


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on September 03, 2010, 09:10:58 PM
;tightend;  to Mr. Anon.


Title: Re: Reece goes away for Christmas. Again.
Post by: technolog on September 03, 2010, 10:32:09 PM

Well done Sir!

And great news that Reece is progressing so well.


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on September 03, 2010, 10:36:45 PM


The true meaning of life is to plant trees, under whose shade you do not expect to sit.


I heard this quote a long time ago. Now I know what it means.


Title: Re: Reece goes away for Christmas. Again.
Post by: trafficjam on September 04, 2010, 12:29:08 AM

Well done Sir!

And great news that Reece is progressing so well.


+1


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on November 08, 2010, 12:10:34 PM
About time for an update I think.

Life in general for us all is totally different down to many different changes of recent.

We have moved, Stacey and Reece are still with us but she has finely been granted a local authority home on a newly built private estate. It will not be finished being built until the end of Nov / early Dec so it is a bit of a squash with us all living here in an apartment ( flat to us commoners) but we managed...JUST, as we still have a lot of medical equipment delivered weekly . She is very excited about her new home now Reece will continue his education at the same school and finally they may be able to settle and not have to move again. 

For us still no internet so tethering via mobile phone.

Stacey is well in control of both hers and Reece's life now and still attends college once a week and voluntary work on Wednesdays with troubled youths. She goes to Uni next year.

Now on to  Reece. We have seen a massive improvement in his day to day health since the Op in Leeds. OK so he still has a massive health problem but we no longer look on the down side all the time, we no longer spend endless nights in hospital with him ill constantly, actually all we go for now is periodic appointments to make sure he is doing good and ready to drop another night off TPN. We no longer have to make him tolerate no end of meds every day, no more carrying large bowls around for his constant vomits which have ceased since the op. Total different way of life for us all.

Reece goes swimming with Darren a couple of times a week, SWIMMING would ya ever have thought it, School every day, eats but prefers to graze. Knows he is different, tends to get a bit bullied but he copes. He has settled in a bit more now at school and mixes a little more than he used to, we no longer have the tears every morning he goes eagerly.

He is coping on 4 nights TPN and last night weighed in at 17.1 k. Tonight though we have to start attempting him bolus feeds into his gatrostomy over night via a pump. This will hopefully be easier to adsorb into his bowel than the food he eats himself so maybe he will put a little more weight on but as we all know he has never tolerated them previously but with the op that was done at Leeds it is now time to try again so this will be on the nights he is off TPN apart from one night which we want him to have nothing going in to give him a rest. He really is not looking forward to them starting.

He still constantly talks about his holiday to Disney which we are aiming on for the first half of next year fingers crossed. We have received Mr Anons donation along with another donation off Skolsuper & Tony plus we have had a pledge of £500 from a lovely couple we met recently called Darren and Mary, hearts of gold they have. So the book has been updated and we now have a total of £3239.07 excl Darren & Marys pledge.  So quite a way to go yet as we have yet to price it up with the insurance etc but get there he will.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on November 08, 2010, 12:13:55 PM
I should have read my last post as I seem to have repeated a bit... sorry.


Title: Re: Reece goes away for Christmas. Again.
Post by: mondatoo on November 08, 2010, 12:15:10 PM
Great to hear things are much better


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on November 08, 2010, 01:02:46 PM
What a little team of heroes you four really are.


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on November 08, 2010, 01:14:04 PM
Great News


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on November 08, 2010, 01:20:40 PM
Amazing how far he's come since the move to Leeds.  I'm so happy for all of you.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on November 08, 2010, 01:41:58 PM

Wonderful news, Maureen, & I will let "Anon" know that the £500 has been safely received. My thanks to Tom for assisting with the actual bank transfer of that.

What a hero Laddo is!


Title: Re: Reece goes away for Christmas. Again.
Post by: TightEnd on November 08, 2010, 01:47:10 PM
Really encouraging to hear all of that.

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: ripple11 on November 08, 2010, 02:08:07 PM
Really glad to hear such positive news :)up


Title: Re: Reece goes away for Christmas. Again.
Post by: trafficjam on November 08, 2010, 02:11:31 PM
Great news Maureen x


Title: Re: Reece goes away for Christmas. Again.
Post by: Wardonkey on November 08, 2010, 03:02:40 PM
It always scares me to open this thread.

But even when the news is bad you amaze and inspire us with your strength and your love.

And on days like today, when the news is good, we all feel so much better about the world, even if the fear never leaves us completely.

Thank you.


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on November 09, 2010, 03:00:55 PM
Very pleased to hear things are stable and Reece is feeling at his best.

Incidentally Maureen what is the target for the holiday fund?


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on November 09, 2010, 05:19:28 PM
Not a clue yet Kev.

Ideally we will need a villa opposed to a Hotel so there will be more room for his equipment. Then there is the insurance, I am going to join a group that helps sort out insurance but I have no idea how much that side of it will cost. I have some leave coming up soon so will be doing some research then.


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on December 04, 2010, 12:19:33 AM
Gr8 news

how is the little man enjoying the snow??


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on December 13, 2010, 10:13:13 AM
Very brief update still awaiting del of internet equipment.  Reece had his 6 th birthday Saturday, time is flying. He is doing well still back down and hovering around 17 kg. Going to drop another night of tpn in the new year as we want him to enjoy Xmas.  Looking forward to Xmas with him. Health wise Allstate going well. 


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on December 13, 2010, 12:13:15 PM
Very brief update still awaiting del of internet equipment.  Reece had his 6 th birthday Saturday, time is flying. He is doing well still back down and hovering around 17 kg. Going to drop another night of tpn in the new year as we want him to enjoy Xmas.  Looking forward to Xmas with him. Health wise Allstate going well. 


According to my moles, that's  (http://t1.gstatic.com/images?q=tbn:ANd9GcTaMMeLuUFdkEbs6_oGufWyCw_K8vP3k0gsedcDACUeYLTHRuYMbQ)  news.


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on December 13, 2010, 04:45:25 PM
Belated congrats to the birthday boy. Any pics?


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on December 13, 2010, 06:26:19 PM
Will put some on soon as get the internet sorted. 


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on December 17, 2010, 02:32:13 PM
 ;cheerleader; ;cupcake; Weeee, we have got the internet back. So much to catch up on now.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on December 17, 2010, 02:34:14 PM
About flippin time!!!  Welcome back Chicka.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: technolog on December 17, 2010, 05:16:21 PM
About flippin time!!!  Welcome back Chicka.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on December 17, 2010, 06:35:51 PM
About flippin time!!!  Welcome back Chicka.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on December 22, 2010, 09:03:43 PM
Little update, wasn't too sure if to update with it being this close to xmas but decided to rightly or wrongly.

Reece got admitted yesterday with a suspected line infection, the first since sept 09, but his bloods are still not showing anything growing in his line. Alas he has got viral symptoms and tonight has been put in isolation pending a swine flu test. He has been in contact with close family members who were tested positive today.

Can't believe how good a run he has had free from traumas of line infections to fall foul to something like this. We really need this to be just a normal bug and not that awful thing. He did have his swine flu jab last year but his doctor couldn't fit him in for his new one until Jan 5th.

Today was supposed to be a good one as Stacey was going to sign for their new home but it has been put on hold for today.

I suppose we have had a stable year and have possibly almost forgotten what it was like to not be in control, hopefully this is just a minor glitch. 


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on December 22, 2010, 09:08:18 PM
Oh man.  I really hope he's ok double time.  Doesn't matter the time of year - ya have to post the good with the bad so we can send the extra vibes and cyber hugs when needed.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on December 22, 2010, 09:25:03 PM
Cheers Dawn. xx


Title: Re: Reece goes away for Christmas. Again.
Post by: celtic on December 22, 2010, 09:40:46 PM
Hope all goes well Mo.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on December 22, 2010, 09:40:55 PM

Oh dear, very sorry to hear that, Maureen.

Keep us informed, plesse.

Knowing him, he'll be fine & dandy by Xmas day. Let's hope so, anyway.


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on December 22, 2010, 09:44:10 PM
Hope all goes well Mo.


Title: Re: Reece goes away for Christmas. Again.
Post by: mondatoo on December 22, 2010, 09:45:02 PM

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on December 22, 2010, 09:54:30 PM
Thanks all. Much appreciated x


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on December 22, 2010, 10:01:12 PM
One thing did make him smile.  Whilst on the ward prior to isolation he got chosen to have his piccy taken for the local Halifax paper.


Title: Re: Reece goes away for Christmas. Again.
Post by: redsimon on December 22, 2010, 10:02:30 PM
Hope everthing turns out ok Mo xx


Title: Re: Reece goes away for Christmas. Again.
Post by: technolog on December 22, 2010, 10:34:21 PM
xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on December 23, 2010, 12:06:07 AM
Get better soon Reece


Title: Re: Reece goes away for Christmas. Again.
Post by: outragous76 on December 23, 2010, 12:22:05 AM
Get better soon Reece


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on December 23, 2010, 12:39:13 AM
Post news asap Maureen.

XX


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on December 23, 2010, 09:49:10 AM


Title: Re: Reece goes away for Christmas. Again.
Post by: Karabiner on December 23, 2010, 11:46:51 AM
xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Robert HM on December 23, 2010, 11:50:46 AM


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on December 23, 2010, 12:04:30 PM
Fingers crossed for a speedy recovery. Happy Christmas to all the Reece tribe. X   ;letsparty; ;mexicanwave;


Title: Re: Reece goes away for Christmas. Again.
Post by: Tonji on December 23, 2010, 12:14:57 PM


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on December 23, 2010, 02:17:26 PM
Still nothing has started to grow in his blood cultures so they are pretty sure it is viral. Swabs taken for his swine flu test, just a waiting game now. His temp still loitering around 38, so not too bad. IF it doesn't go higher again and he doesn't get any worse in himself , plus after tomorrow morning his cultures are still clear they may allow him home for xmas pending Swine Flu results. Lots of IF's but at least there may be a chance of having him home yet.

We still can not believe after all this time of being hossy free it has to come now.


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on December 23, 2010, 03:02:01 PM
Still nothing has started to grow in his blood cultures so they are pretty sure it is viral. Swabs taken for his swine flu test, just a waiting game now. His temp still loitering around 38, so not too bad. IF it doesn't go higher again and he doesn't get any worse in himself , plus after tomorrow morning his cultures are still clear they may allow him home for xmas pending Swine Flu results. Lots of IF's but at least there may be a chance of having him home yet.

We still can not believe after all this time of being hossy free it has to come now.

Still, if it turns out that he's OK at the cost of a belated Christmas, we'll take it.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on December 23, 2010, 03:14:26 PM
True Tom. x


Title: Re: Reece goes away for Christmas. Again.
Post by: rex008 on December 23, 2010, 03:18:24 PM
Sending cyber-hugs to the lot of you Maureen. Hope you have a good Christmas, whenever it ends up being.


Title: Re: Reece goes away for Christmas. Again.
Post by: Wardonkey on December 23, 2010, 06:08:37 PM
Fingers crossed for a speedy recovery and a very merry Christmas.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on December 24, 2010, 10:08:08 AM
Blood cultures have come back clear so no dreaded line infection. Swine flu results not yet in but his temp has been normal all night and he is in good playful spirits. Therefore they are allowing him home, IF results from swine flu are not ready then he will commence Tamiflu IF results are negative before they leave the hossy then no Tammy Flu just home. So phew... that was a close call.



Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on December 24, 2010, 10:14:14 AM
Excellent X


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on December 24, 2010, 11:21:56 AM
good news Mo. Hope you all have a lovely christmas x


Title: Re: Reece goes away for Christmas. Again.
Post by: Karabiner on December 24, 2010, 11:48:52 AM
good news Mo. Hope you all have a lovely christmas x

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: mondatoo on December 24, 2010, 12:24:02 PM
Excellant news,hope you all have a great Christmas

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: technolog on December 24, 2010, 02:58:56 PM
Brilliant news Mo. Hope you all have a wonderful Christmas and a very healthy New Year xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on January 04, 2011, 10:43:55 AM
Hope you all had a good festive period we did, will get around to posting some pictures soon only not had much time off over the last few weeks, I got unlucky with my shift pattern.

Reece had his course of Tami-flu but it turned out that it was a false alarm, not swine flu. His cultures for his line also came back clear but his swab from the entrance to his line was showing some growth signs so he is on antibiotics for that. Not a life threating internal line infection, just external. Almost over his regular flu, still coughing plus a cold which he hasnt shook off since the end of November so he has returned to school today in fine fettle apart from that.

He is full of it lately and great it is to see, lets hope he stops picking up illnesses from school, I think he gets more because of his low immune system. He is also getting more and more the comedian ( if that's at all possible) some of the things he comes out with are hilarious.

Today Stacey finally gets the keys to her house, after it not happening pre xmas. Not sure if I have already said in past posts but she has been on the list for a local authority home since moving in with us back in March / April time last year after deciding she could no longer afford to pay for private renting. Any way she was lucky enough to get accepted for a private estate new build. Apparently so many new builds have to be let out or something like that, so although the date kept being put off due to weather and other minor things today is her big day. It needs carpeting, wardrobes, cooker etc, as because it is not being sold they have not put these into the rented ones, but these will come in time. She is very excited.

We are now starting to look to book Reece's holiday as we have to give the team at least four months notice. It is not an easy task, apparently we need to talk to an airline directly to ask if they will waiver extra luggage fees, as we will be carrying a lot of medical equipment with us for the first part of the holiday, then I believe that we will get the rest delivered off an American supplier whilst over there, Some will be there waiting but we need to take some with us too. I am soooo not looking forward to asking, I hate doing things like that. Been looking at flights already, not yet seen some that suit our budget so will keep onto it. The hospital was hoping we had some sort of idea by this Thursday as it is Reece's out patient appointment with the medical team and they wanted to start plans I think.

Eating wise, he is up and down, with having this flu bug then a cold for so long it must be hard for him to have a good appetite, saying that, this week he is doing a lot better. He has four night on TPN, then 3 Nights on another machine into his mickey button on his belly that feeds him a high nutrient (like milk but not milk) feed over the night. He is tolerating the amount at the moment and not vomiting like he always used to although the pump is only set at 40 mil p h for 10 hours so it is a lot slower than before. Touch wood his tummy has remained a nice shape and there are no signs of dilation/distended gut. His weight remains around 16.9 / 17.2. He is noticing ( with the help of the other kids comments) that he is smaller than his school friends but we just keep telling him Grandad was until he was 12, this seems to work.

So there we go, lots of positives to start this year, unlike the last few years when he was always either in hossy with line infections or liver problems or knowing we were going to be putting him through more major surgery. Fingers and everything crossed he can go 2011 without the dreading theater looming. Like I have said before our lives are so much more normal for us since the op in Leeds last year, obviously no where near what most people class as normal but we will take thanks. 

Happy New Year all.

XX



Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on January 04, 2011, 10:55:38 AM

All good then, Maureen!

Happy new year to you, Darren, Stacey, & The Legend himself.


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on January 04, 2011, 11:03:14 AM

All good then, Maureen!

Happy new year to you, Darren, Stacey, & The Legend himself.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on January 04, 2011, 12:21:29 PM
All excellent news to start off the new year! 

Delighted for ye and we need to speak soonest to arrange handing over of the few bob I have towards that vacation fund.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on January 04, 2011, 01:16:48 PM
 :)


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on January 04, 2011, 01:33:24 PM

All good then, Maureen!

Happy new year to you, Darren, Stacey, & The Legend himself.


Title: Re: Reece goes away for Christmas. Again.
Post by: Tonji on January 04, 2011, 02:12:02 PM
Have a wonderful & healthy 2011.


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on January 04, 2011, 04:52:40 PM

All good then, Maureen!

Happy new year to you, Darren, Stacey, & The Legend himself.


Title: Re: Reece goes away for Christmas. Again.
Post by: mondatoo on January 04, 2011, 10:41:33 PM
Great update,really hope you all have a great year xx


Title: Re: Reece goes away for Christmas. Again.
Post by: technolog on January 05, 2011, 12:37:02 AM
Great news Maureen, long may it continue x


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on January 06, 2011, 12:23:51 AM
Reece had his outpatients appointment today, (not Thursday) I didn't get to attend as Stacey only told us today that it was not Thursday like thought, so I was on lates, but hey ho..all went very well.

Team are very happy with his progress on 4 nights, so as planed he drops another night off TPN and replaces it on a night of pump feeds into his gastrostomy. Now here is the biggy, they are that confident that he is doing well that they intend dropping a night every month and aim for him to be TPN free as of April. This is great news but I intend not to get too confident as he has already failed twice as we well know. I think the struggle will come when he goes from 3 to 2, but I truly hope I am wrong. With so many disappointments in the past I have learnt from my mentor (RedDog) to take it day by day and not to expect too much, and strangely enough it is easier to accept this way of thinking than one would imagine, although when things do go wrong it hits bloody hard still.

Anyway, I think it is another great big step in the right direction, this child is not only my very special Grandson but my life hero. I feel very privileged that we were lucky enough to have him born to our family.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on January 06, 2011, 12:28:10 AM
xx


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on January 06, 2011, 12:29:32 AM

Awesome. Little by little, he's getting there.

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on January 06, 2011, 09:33:32 AM
good stuff Mo x


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on January 06, 2011, 02:28:49 PM
 :)up  N1 Mo

very encouraging news fingers crossed xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Robert HM on January 06, 2011, 03:38:53 PM
 :)


Title: Re: Reece goes away for Christmas. Again.
Post by: trafficjam on January 07, 2011, 04:37:31 PM
Great News - Happy New Year to you and your lovely family xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on January 10, 2011, 12:29:05 PM
I have just received yet another very kind donation of £110 off Ian aka cia260895. This was for his Sky Poker seat for which he could not attend to play, so very kindly donated the entry fee to Reece's holiday account.

I have withdrawn the amount ( subject to FT allowing me to withdraw a transfer) and as soon as it hits my bank will then put it into Reece's savings book.

A massive THANK YOU  to Ian from us all.

XXXXX


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on January 13, 2011, 08:28:54 PM
Ian's money got to my bank today so on my break tomorrow I hope to get to Reece's bank and deposit it. I will then scan the book and send copies to Tom & Tighty. I will also take the book along with me to Bolton For tighty to see in person.

TY all... we are getting close I think. xx


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on January 13, 2011, 11:28:02 PM
n1 Ian.

How much left to be made til you get there Mo? I have an idea.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on January 14, 2011, 09:49:23 AM
n1 Ian.

How much left to be made til you get there Mo? I have an idea.

Not too sure tbh. Still pricing things up.  We want it to be magical for him. 


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on January 18, 2011, 07:12:44 PM
Stacey is rather excited, she was told today that she has been conditionally accepted (does that sound right?) at Huddersfield Uni, subject to her getting top marks this year off her college course that she is in her second year of. She is quite confident she will achieve top so therefore will commence uni studying  Law & Accountancy this September.

Well Done Stacey.



Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on January 18, 2011, 07:22:33 PM
The year keeps getting better and better for ye.  Excellent news!!!   ;applause; ;hattip;


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on January 18, 2011, 09:13:18 PM
well done Stacey indeed!


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on January 19, 2011, 12:49:41 PM
Well starting the ball rolling now with the holiday plans. Colin (cdw) is sending us up a BA paper where some villas may be within our price range, he is also seeing what flights will work out at but the only down fall would be the extra traveling for the little fella as it would have to be from Gatwick. Plus we will have to ferry a lot of luggage. 

I have priced some flights with Thomas Cook today, they work out at £1600 all but a few quid which is better than other prices I have had. I also managed to phone them up and ask if they waiver extra luggage for him, they said as long as it is all medical and packed separate, yes they do. Pheww that helps some. Still not ready to book the flights until I have sorted the insurance out. I have joined PINNT today which is an online site specially for people like Reece, it gives lots of helpful info and links to travel insurance firms which others have already used. Just got to wait for a pin to log in to arrive.

My belly is churning, so bloody scared to book owt just in case....... The team seem to think he will be free of TPN and just on Gastrostomy feeds over night by the time we go, I would love to believe this but always a shadow, specially when he has dropped a bit in weight again. This may be due to him being on antibiotics and making him even more frequent than he usually is. He will still be able to go even if he is on TPN, but I want him to be fully functioning when we are there not thin and tired due to just stopping TPN. We will see, what will be will be. He is going that's for sure as soon as Grandma can press the book button. Hopefully May / June, then the battle with the school begins as they really do not like the children being off but we have to go when we can, he ain't missing out this one.


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on January 19, 2011, 12:54:15 PM
Good news for Stacey. Congrats


Title: Re: Reece goes away for Christmas. Again.
Post by: celtic on January 19, 2011, 12:55:09 PM
Good luck Mo. Hope it all goes to plan.


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on January 19, 2011, 12:57:14 PM
Our school moans like mad if we take the kids out for a week or a fortnight to go to a fair or something. We just try to explain that it's still all education, then we smile sweetly and take them anyway.

They're schools, not jails.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on January 19, 2011, 05:12:11 PM
Managed to take id into bank and do coa today plus updated Reece's account. There was a deposit made in November via fast banking but not sure who it has come off. If you want to pm me so i can thank you please do or if it is an anonymous donation I thank you now very much.

Xx


Title: Re: Reece goes away for Christmas. Again.
Post by: pleno1 on January 19, 2011, 05:25:43 PM
Hey, somehow this escaped me. 109 pages is alottttttttttt, kind of got the cliffs now. Very touching, where do we send donations to?


Title: Re: Reece goes away for Christmas. Again.
Post by: pleno1 on January 20, 2011, 12:48:45 AM
Hey, somehow this escaped me. 109 pages is alottttttttttt, kind of got the cliffs now. Very touching, where do we send donations to?

bump please :)


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on January 20, 2011, 12:51:49 AM
Tis best to put str8 into his account, that way every donation is clearly shown.
x


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on January 20, 2011, 12:52:39 AM
Obv if it remains anon, it is shown as a anon entry.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on January 22, 2011, 11:40:33 AM
My head is everywhere, where does one start with these theme park ticket entries. CDW sent me a link to a site that sells all sorts but with never having gone over that side of the states it is all mind boggling to me.

Is there anyone here that has been a few times and can guide me on the ticket side of things, ie what is where, do certain packages incl this that n the other, and OMG look at the prices of these things, geez. Obv, we want the Disney one, a water one, sea world is it? DEFFO Animal Kindom, he also seems to think he can go swimming with a dolphin and kiss it, me thinks he has been surfing the net too much, not too sure what else we should be looking at. HELLLPPPPP.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on January 26, 2011, 06:22:36 PM
Been on to insurance companies today, first one said we will insure you but you wont know if you are covered until you try and claim? wtf is that about. That was Morethan. Worldwide insurance has accepted us, but whilst on the phone Stacey called to say that because Reece'scuff has come out of his body, ( this is the part of the line that keeps it in place) has come out of this chest Leeds want to operate next Friday and put a new one in. Not emergency surgery but obviously as we well know he is short of veins so they hope to reuse the same one. Not been possible on Reece before so we will see how it goes. So we are back on hold again, the insurance company told us to call back a week on Monday then they will re-access.  The quote today was £185 which is better than we thought it would be.

So not booking anything until a week on Monday.



Title: Re: Reece goes away for Christmas. Again.
Post by: celtic on January 26, 2011, 06:30:56 PM
Been on to insurance companies today, first one said we will insure you but you wont know if you are covered until you try and claim? wtf is that about. That was Morethan. Worldwide insurance has accepted us, but whilst on the phone Stacey called to say that because Reece'scuff has come out of his body, ( this is the part of the line that keeps it in place) has come out of this chest Leeds want to operate next Friday and put a new one in. Not emergency surgery but obviously as we well know he is short of veins so they hope to reuse the same one. Not been possible on Reece before so we will see how it goes. So we are back on hold again, the insurance company told us to call back a week on Monday then they will re-access.  The quote today was £185 which is better than we thought it would be.

So not booking anything until a week on Monday.



£185 is excellent. About a tenth of what I thought it was gonna be given some of the insurance quotes I have looked at in the past.

Hope you get it all booked soon.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on January 26, 2011, 06:38:37 PM
Been on to insurance companies today, first one said we will insure you but you wont know if you are covered until you try and claim? wtf is that about. That was Morethan. Worldwide insurance has accepted us, but whilst on the phone Stacey called to say that because Reece'scuff has come out of his body, ( this is the part of the line that keeps it in place) has come out of this chest Leeds want to operate next Friday and put a new one in. Not emergency surgery but obviously as we well know he is short of veins so they hope to reuse the same one. Not been possible on Reece before so we will see how it goes. So we are back on hold again, the insurance company told us to call back a week on Monday then they will re-access.  The quote today was £185 which is better than we thought it would be.

So not booking anything until a week on Monday.





£185 is excellent. About a tenth of what I thought it was gonna be given some of the insurance quotes I have looked at in the past.

Hope you get it all booked soon.

I know I was almost crying when she said the price, I was beginning to think we wouldn't be going.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on February 03, 2011, 05:41:13 PM
A guy at work mentioned that IF Reece were to become ill in the states we would most likely have to pay up front for any treatment. Geez, we sure have  got that sort of dosh hanging around. So this is making me even more nervous about booking, I have to find my balls and just go for it.

Got to wait until Monday to contact the insurance again I will ask them then.

Reece goes to surgery tomorrow, we still haven't told him, best not to until the time we think as he understands everything. Last night he slept in our bed as he loves to cuddle whilst asleep, he knows you know if you move him to the middle, anyway I didn't have the heart to move him so slept hanging on the edge of a SUPER king size bed whilst himself and Darren snored the night away.

Showed Tighty Reece's book at Bolton, but still got to update it this week after Dawn gave her monies from the Doyle Brunson book she bid for. Thanks all involved in that one. xx Also had a pm off another Blonde to say he wanted to make a donation, so hopefully we are getting there. Someone we know had four Disney passes left over and they have kindly given us them which will help.

Anyway main focus is tomorrow for now. Come on Reeceyboy you hero, you can do it. xx


Title: Re: Reece goes away for Christmas. Again.
Post by: celtic on February 03, 2011, 06:38:38 PM
All the best for tomorrow Reece


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on February 03, 2011, 06:39:21 PM
Fingers crossed


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on February 03, 2011, 06:53:34 PM
Always thinking of ye, but will be sending extra good vibes out tomorrow.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: mondatoo on February 03, 2011, 10:02:58 PM
All the best for tomorrow Reece


Title: Re: Reece goes away for Christmas. Again.
Post by: redarmi on February 03, 2011, 10:09:05 PM
A guy at work mentioned that IF Reece were to become ill in the states we would most likely have to pay up front for any treatment. Geez, we sure have  got that sort of dosh hanging around. So this is making me even more nervous about booking, I have to find my balls and just go for it.

Got to wait until Monday to contact the insurance again I will ask them then.


This isn't really true IMO.  It will be a bit of a pain but if it is serious they will generally treat first and seek payment second.  It would be very unlikely they would turn you away for not having the means to pay as very few do....everyone out there has insurance it is just a case of them figuring out how they will get paid.  That said make sure ytou have it for everyone not only Reece as if you fall and break your leg you will be spending half your life paying it off if you aren't.....trust me I spend about 9 months a year out there at the moment and lost a crown and needed some more dental work and was given a quote of $20k!!!!!  It just isn't worth it!!!


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on February 03, 2011, 10:18:29 PM
phew thank goodness for that,was thinking should we risk it or not.


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on February 03, 2011, 10:21:30 PM
gl for tomorrow Reece x


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on February 03, 2011, 10:26:45 PM
A guy at work mentioned that IF Reece were to become ill in the states we would most likely have to pay up front for any treatment. Geez, we sure have  got that sort of dosh hanging around. So this is making me even more nervous about booking, I have to find my balls and just go for it.

Got to wait until Monday to contact the insurance again I will ask them then.


This isn't really true IMO.  It will be a bit of a pain but if it is serious they will generally treat first and seek payment second.  It would be very unlikely they would turn you away for not having the means to pay as very few do....everyone out there has insurance it is just a case of them figuring out how they will get paid.  That said make sure ytou have it for everyone not only Reece as if you fall and break your leg you will be spending half your life paying it off if you aren't.....trust me I spend about 9 months a year out there at the moment and lost a crown and needed some more dental work and was given a quote of $20k!!!!!  It just isn't worth it!!!

We are all going on same policy.


Title: Re: Reece goes away for Christmas. Again.
Post by: technolog on February 04, 2011, 01:21:31 AM
gl Reece x


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on February 04, 2011, 12:35:23 PM
GL Reece, soon be on Hols. X


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on February 04, 2011, 05:12:22 PM
On mobile so excuse any errors.
He got himself a bit worked up before theater so they put the syringe in his central line and let him put himself to sleep when he felt ready to press.  This helped as he felt more in control.  Anyway good news is his surgeon., Mr Sugarman , has managed to use the same vein. Massive achievement this as with Reeces veins this is not usually an option.  They have brought it out of a different exit in his chest and got rid of old granulation sewing that old one up so will return to theater in four weeks to take stitches out as couldn't use dissolving ones this time.  Anyway he is also coming home TONIGHT lol.  He wants to sleep at his grandmas he says so.....another balance on the edge of the bed for me lolol. Worth it though.   


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on February 04, 2011, 05:14:45 PM
good news Mo x


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on February 04, 2011, 05:21:36 PM
Ty Clairebear. On a bit of a high now we are.  Mr Sugarman also said he oxspring pleased with Reeces progress as he never thought he would come this far so well.  Is was very impressed with his progress from when he first met him almost skeleton like.  Xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on February 04, 2011, 05:23:12 PM
Predictive txt. 


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on February 04, 2011, 05:24:44 PM
Predictive txt. 

i think 'oxspring pleased' should be a new blonde phrase :)


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on February 04, 2011, 05:30:34 PM
wiiiiiiiiiiiiii gr8 news mo x


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on February 04, 2011, 05:43:48 PM
Never in doubt, but brilliant news all the same!!!  He's a tough wee cookie, so he is.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on February 04, 2011, 07:01:52 PM
"I can't wait to grow up, I am going to be a doctor like you, then I am going to put you on that bed and put you to sleep to see how you like it".

Quoted....... Reece Snape 4/02/20111 @ LGI theater.


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on February 04, 2011, 07:07:00 PM
"I can't wait to grow up, I am going to be a doctor like you, then I am going to put you on that bed and put you to sleep to see how you like it".

Quoted....... Reece Snape 4/02/20111 @ LGI theater.

 rotflmfao rotflmfao


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on February 04, 2011, 07:30:00 PM
He is now playing marbles at home with Grandad. What a hero. 


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on February 04, 2011, 07:48:42 PM
Ty for replies Cia , Dawn n Clawgirl. Means a lot Xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on February 04, 2011, 08:21:42 PM
Tried to post a couple of pics but it always says too big.


Title: Re: Reece goes away for Christmas. Again.
Post by: ripple11 on February 04, 2011, 09:43:49 PM
 Great news  :)up


Title: Re: Reece goes away for Christmas. Again.
Post by: sofa----king on February 04, 2011, 09:48:44 PM
Great news  :)up
tell him to keep eating.,.,..,when i see him i will bring him a special SOFA----KING sandwich


Title: Re: Reece goes away for Christmas. Again.
Post by: technolog on February 04, 2011, 10:23:45 PM
"I can't wait to grow up, I am going to be a doctor like you, then I am going to put you on that bed and put you to sleep to see how you like it".

Quoted....... Reece Snape 4/02/20111 @ LGI theater.

Brilliant!


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on February 05, 2011, 05:38:31 AM
Awwwwww....god love him.  Might not make any sense, but never met the Lad yet I can actually hear him saying those words.  Double scoops of cyber hugs if ya don't mind.  Please and thanks.  All for starting his college fund now too.  Would love to see him stuff that doc in years to come.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on February 05, 2011, 10:50:04 AM

..."oxspring pleaased"!

Ain't we all......

PS - Nice to hear from you yesterday. Not so nice to be told "ooh, I did not want to talk to you". What a rub....... ;)

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on February 05, 2011, 11:59:01 AM
Just marvellous news. Did he batter grandad at marbles?


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on February 05, 2011, 12:03:27 PM

..."oxspring pleaased"!

Ain't we all......

PS - Nice to hear from you yesterday. Not so nice to be told "ooh, I did not want to talk to you". What a rub....... ;)

xx

LOL I was meant to be phoning TCS.

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on February 05, 2011, 12:04:30 PM
Just marvellous news. Did he batter grandad at marbles?

He certainly did.

He isrunning around the house playing like nothings happened. If it were one of us we would be sat on the sofa feeling sorry for ourself.


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on February 05, 2011, 12:08:06 PM
Great News, classic Line from Reece xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on February 05, 2011, 07:13:55 PM
Darren n I are venturing out tonight, dont do this very often Sad? or just happy in our routine?  Guilty free I guess. What a weird life.


Title: Re: Reece goes away for Christmas. Again.
Post by: sofa----king on February 05, 2011, 07:32:19 PM
Just marvellous news. Did he batter grandad at marbles?

He certainly did.

He isrunning around the house playing like nothings happened. If it were one of us we would be sat on the sofa feeling sorry for ourself.
Please don't anyone sit on me


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on February 07, 2011, 05:17:58 PM
Great night Saturday. Lots of beers played poker, got a mini cash could have been more but hey we were out to play, taxi home ,great night. Always hard going out enjoying oneself especially so close to surgery but st did it n enjoyed it.

Took us back to our trip to Cyprus with James aka Sofa king ,,,,,,,,,,,he took away all our guilt of relaxing and showed us what true friends really are about. Saying true friends we had never met to that point but I can say James has done far more for us than what he let's out, therefore a friend can't be truer. Xx



Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on February 09, 2011, 06:35:16 PM
Soooo want to find flights but where we live our internet runs like a slug and takes ages to refresh, getting very frustrated. Feel like there is always something holding us up from booking.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on February 10, 2011, 08:49:18 PM
So very much i want to say but will sit on it.


Title: Re: Reece goes away for Christmas. Again.
Post by: celtic on February 10, 2011, 08:52:50 PM
Soooo want to find flights but where we live our internet runs like a slug and takes ages to refresh, getting very frustrated. Feel like there is always something holding us up from booking.

Do you know dates & times etc? Can you give details to someone you trust and your card details?


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on February 10, 2011, 09:13:10 PM
Check your PM's Maureen.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on February 11, 2011, 07:37:51 PM
Soooo want to find flights but where we live our internet runs like a slug and takes ages to refresh, getting very frustrated. Feel like there is always something holding us up from booking.

Do you know dates & times etc? Can you give details to someone you trust and your card details?

Looking for cheapest time to go, it is all far more expensive than we anticipated initially. So flexible ish on travel dates. As to trust someone , yes course I would but don't know that many that would / could ask the questions that we need answers for.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on February 11, 2011, 07:40:34 PM
By flexible we cant do last minute. But at a push we could persuad hossy to drop the 4/5 months notice.


Title: Re: Reece goes away for Christmas. Again.
Post by: celtic on February 11, 2011, 09:31:13 PM
Soooo want to find flights but where we live our internet runs like a slug and takes ages to refresh, getting very frustrated. Feel like there is always something holding us up from booking.

Do you know dates & times etc? Can you give details to someone you trust and your card details?

Looking for cheapest time to go, it is all far more expensive than we anticipated initially. So flexible ish on travel dates. As to trust someone , yes course I would but don't know that many that would / could ask the questions that we need answers for.

I'm confused Mo, which doesn't take much to be fair ;) You can't book because your internet is shite?  Which if so, I understand. But wouldn't any questions you have be done on the phone? Therefore you could do that, then get someone else to book the flights on the tinterwebs? Simplez, or am I being dumb?


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on February 12, 2011, 11:05:35 AM
I'm confused too lol. I like to search net to get best deal. Then call as soon as we see deal to ask questions. None in hudds that I know that well with net tbh. Cept for mother in law n she is not quit up to speed on surfing although she is now on FB lol. Also with my silly bloody long shifts not a lot of spare time. 


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on February 16, 2011, 09:44:29 PM
OK so updated book, Laxie's donation has been ( TY so very much and I know you didn't have to go ahead but still chose to) added along with another blondes donation of £250.THANK YOU Mr Stuart Hopkin.

I know there has been a bit of up n down lately regarding a possible donation to Reece, well I just want to say no hard feelings, it is his mad dimz and up to him who /if he wishes to donate to. Obv he said he would prefer to donate to a reg charity which a lot of folk do, fair play, but i still would like to thank all of you that have contributed 100% towards Reece and us getting to Orlando for his dream. THIS IS GOING TO HAPPEN.

Looking high n low for best deals. Taking into account we were pledged 750 from a couple we met but as yet this has not transpired so are reducing budget accordingly. Geez these flights have gone up. So far best deal is 15th June staying at Liki Tiki  £2236. plus luggage. £18 pp E/w. After last night at work I am more than eager to go ahead n book this as I feel lucky lucky lucky to be alive. If we go in June it gives me more time to get them rest day workings in which = more spondulies to spoil him with.

I have made our first withdrawal from the account yesterday, 15th Feb 2011 of 1k, this was in prep to pay for flights, I will also withdraw a further 1k tomorrow, this will leave  £1924.38, As i said before we owe it £500 ( from previous donations ( which were for anything we felt we needed for him) before Reece's holiday fund was set up at 17/03/09). This will be entered very soon as Stacey needed the money to set up her new home.

Continue to thank all you Blonde members to make this dream possible. Without you all this dream would not be happening.



Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on February 20, 2011, 02:56:05 PM
OK Booked it yesterday for the 15th June, changed our minds on the accommodation, now staying at Lucaya Village. Kissimie. £2301.00 for Flights & accom. This was the best price I could find, cant afford to stay at a Disney resort, plus this place will give him some R & R if needed.

 Disappointed to have missed that we had to pay short of £50 DEBIT card charge, knew there were charges if using CC's, but I don't even have a C C,  phoned and asked if they would waver it but they said no. Hey ho.

Lots n Lots to organize now, from insurance letters from the hossy, to talking again to Thomas Cook re: on board pump  feed and hold medical excess. Local hospitals etc...etc.etc. the list goes on.

Another thing we never thought of was size of car. We were hoping for just a bog standard as hope not to be travelling mega miles, but the airport is a good bit away so when we land and collect car we will have a lot of excess luggage that the car will need to have space for so I will need to book a bigger one to accommodate this.

Still not too sure if to pre book park tickets as not too sure if he will feel up to excursions every day. Plus a lot of them include water parks, which will be a waste of time as he cant stay in pools all day.

Anyway the big step has been taken.

Thanks all. xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on February 20, 2011, 03:26:37 PM
No promises, but I might be able to do something for ya on the Disney park front.  Leave it with me.


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on February 20, 2011, 03:37:53 PM
Bon voyageeee!!


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on February 20, 2011, 04:56:48 PM
OK so updated book, Laxie's donation has been ( TY so very much and I know you didn't have to go ahead but still chose to) added along with another blondes donation of £250.THANK YOU Mr Stuart Hopkin.

I know there has been a bit of up n down lately regarding a possible donation to Reece, well I just want to say no hard feelings, it is his mad dimz and up to him who /if he wishes to donate to. Obv he said he would prefer to donate to a reg charity which a lot of folk do, fair play, but i still would like to thank all of you that have contributed 100% towards Reece and us getting to Orlando for his dream. THIS IS GOING TO HAPPEN.

Looking high n low for best deals. Taking into account we were pledged 750 from a couple we met but as yet this has not transpired so are reducing budget accordingly. Geez these flights have gone up. So far best deal is 15th June staying at Liki Tiki  £2236. plus luggage. £18 pp E/w. After last night at work I am more than eager to go ahead n book this as I feel lucky lucky lucky to be alive. If we go in June it gives me more time to get them rest day workings in which = more spondulies to spoil him with.

I have made our first withdrawal from the account yesterday, 15th Feb 2011 of 1k, this was in prep to pay for flights, I will also withdraw a further 1k tomorrow, this will leave  £1924.38, As i said before we owe it £500 ( from previous donations ( which were for anything we felt we needed for him) before Reece's holiday fund was set up at 17/03/09). This will be entered very soon as Stacey needed the money to set up her new home.

Continue to thank all you Blonde members to make this dream possible. Without you all this dream would not be happening.


Drew the 2nd 1k out on the 18th instead of the 16th.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on February 21, 2011, 03:03:18 PM

Excellent news, the dream comes ever nearer.


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on February 21, 2011, 05:14:47 PM
Fantastic news have a wonderful time.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on March 01, 2011, 11:51:25 PM
Would like to Thank Technologic AkA Jack for his very very kind donation which has been received. ((((    ))))  xx
 
Getting there now, been having long chats on the phone to the medical team again today, wowser, there are many letters we have to carry, some for Airlines, then customs, explaining what meds we are carrying and for permission to enter the USA with them. Goodness me there is also megga amount of intravenous fluids to take with us, luggage is going to be well heavy lol. We have to take it as the USA will not allow it to be delivered over there for the second week and TPN only lasts one week so we will put him on the fluids the second week.

It has more or less been decided that he will remain on three nights TPN until after the holiday now, so as not to risk him being low or poorly out there, like i said the second week intravenous saline instead of the TPN. I like this idea as we dont want to run the risk of any downfalls out there. We want him to be as full of energy as possible.

Traveling out on the flight he will be on a enteral feed via his gastrostomy, this will keep him from getting dehydrated during the flight, then give him TPN when we arrive to boost him up.

Nervously excited.

He goes back to theater this Thursday, only a day one to remove some stitches where they cut off his granulation from his old infected line when he had his new one a few weeks back. He needs to go under for this as the stitching was a little more than your usual stitches. He will not be impressed to say the least.

His weight is staying around 17.3 to 17.6 atm. Fairly happy with this taking into account he had an active school holiday week, incl ice skating lol. plus the extra night being dropped off TPN. Just a niggling feeling he is not 100% at the moment but he can do this then bounce back the next day.

He is fast on in our bed right now as I am on lates and he wanted to sleep over tonight and be with his Grandad, who can say no, not us for sure.

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on March 14, 2011, 05:07:06 PM
Getting things sorted slowly but surely.

Some of his feeds are going to be transported over there for us FREE. by the company that dels here. We still have to take his first weeks TPN with us, thats is if he is still on it as GOOD NEWS.....he is managing on two nights a week for the last two week. Then Nutrini the other nights over 10 hours whilst he sleeps. Not lost weight weighed in today here at 18.3 but he was still in uniform, so take a little off for that and we are pleased. We will still have to take around 11 to 14 bags of intravenous fluids with us so that he doesn't dehydrate.

Also on the make a wish front, they might be able to help us with some of the ticket entry's as we have already paid for the accom & flights ( well you guys have), which they would have helped with apparently subject to assessment.  But the accom they put you in would have been room only ( i think) but with free food, this would not have been any use to us as we need to feed him as and when he gets hungry so wouldn't want to have to trail him out late if he was tired after a full day out. If they dont help, Laxie has been onto Disney customer relations and they will grant some tickets for 2 adults and 1 child.

Think we will have to go for a Dodge Charger for the car as we need plenty of room to transport all luggage from the airport to Kissimie. Lookslike a cost of £330 for 2 weeks inc two drivers and a tank of fuel. 


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on March 14, 2011, 05:10:55 PM
Oh yes, forgot to say, Leeds decided they want to try and get him off not leave him till after the hol. Up to them at the end of the day.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on March 14, 2011, 05:38:08 PM

All good Maureen!

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on March 14, 2011, 05:41:38 PM

All good Maureen!

xx

Thank you Tony,

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on March 14, 2011, 07:54:50 PM
That's excellent news Maureen!  So glad he's feeling better.

Any chance the make a wish crowd would cover the price of the rental car?  No harm in asking seeing as it's required for all his gear.

Hugs to the lot of ya.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on March 24, 2011, 05:21:15 PM
Joyce, the lady we rent our apartment from, ( been a friend for years too) has lent us a cam corder for the holiday. So pleased, just don't want to spend too much time filming as want to see him in real life experiencing it all, but well pleased with this.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on March 24, 2011, 05:34:06 PM
How's Reece getting on?  Hugs to the lot of ya.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on March 25, 2011, 04:49:19 PM
Weighing in around 17.8 atm. Very sore tummy bright red plus new line is very sore. So starting on some treatment for that but taking till Monday for the chemist to get it in.  Alsohis bum is very very red. He still runs round playing etc. If it were one of us we would be up our trees with it all.  Thank-you for asking Dawn x


Title: Re: Reece goes away for Christmas. Again.
Post by: mondatoo on April 03, 2011, 03:37:14 AM
Xxxx "hugs"  ;)

Hope everything is well.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on April 24, 2011, 12:51:55 PM
I know updates on here are few and far between this is due to me not having very much free time atm. I am working most of my rest days. I will,  however get round to doing a decent one with some pictures as soon as I get a spare few hours as it takes me that long to shrink pictures etc in order to post them ( took me 3 hours this morning to print off a few easter bunny hunt pic's for his trail around the flat doh...).

Today I am posting as I have been informed that a very kind person has made a donation to Reece's holiday fund but wishes to remain anon.

Thankyou Mr Anon. Your a very kind person hopefully now the swimming with the dolphins will be possible too.

Highest Regards, from us all. XXXXXXXXXXXXXX


Title: Re: Reece goes away for Christmas. Again.
Post by: celtic on May 17, 2011, 03:52:37 PM
Less than a month to go!

All going to plan?


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on May 18, 2011, 12:52:25 AM

I think Maureen is a little busy right now, but the news on Reece is EXCELLENT - his bestest news EVER, in fact.

More soon, I asked Maureen if the news could be Posted, but she's not replied yet.

All gooooooooooooooooooooooooooooood!


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on May 18, 2011, 06:25:09 AM
Wiiiiii


Title: Re: Reece goes away for Christmas. Again.
Post by: technolog on May 18, 2011, 06:42:10 AM
Wiiiiii


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on May 18, 2011, 08:19:04 AM
I gather Reece had his big check-up on Monday at Leeds, very important, because he has been off TPN for 3 weeks.

The news was quite spectacular - Reece MAY not have to go back on TPN ever again!

Maureen is too excited to think clearly right now, hardly believing it is true, & worried that it is not, as one might expect. She is full of fear that he may have to go back on it - what a mixed emotion it must be? - he's OFF TPN, after all these years, but the worry he may have to go back on is all the more daunting now.

The near-term hope - the next 6 months is that he can survive on "gastro feeds", & then, in October, whisper it quietly, he may be able to manage without even them.

He is now looked after, medically, by Mr Puntis, in Leeds, what an uptick there has been in Reece's progress since that dreadfully difficult move across from Manchester. At the time, Maureen fretted that it might be a bad decision, but the bet has paid off, handsomely.

For those late to the story, young Reece has had severe problems all of his short life, & endured - literally, I think - hundreds of surgical operations. He could not absorb nutrient, & his weight was pitifully low - early last year it was near impossible to keep him north of 12kg, but he's really putting on weight & substance now.

Hard to believe that on New Years Eve 2004, he had to be resuscitated, &, to be honest, few believed, in the following years, that he would be able to live a normal life. He's now doing more than surviving, he's prospering.

He's quite the bravest lad I've ever known, & Maureen, Darren & Stacey's lives have been wholly dominated by the boy's challenges.

Arguably, it's the greatest story blonde has ever known, & it's incredibly touching that he has been morally supported & financially helped by so many of the blondes.

Fingers crossed, the long-term dream of taking him to Disneyland in Florida is about to happen. It's an incredibly expensive trip, because of Reece's condition, but so many blondes have donated in different ways, & Maureen is lost for words as to how to thank them. She has no need.

Here's the young man yesterday. Looking good, eh?





Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on May 18, 2011, 08:23:13 AM
Fantastic news


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on May 18, 2011, 08:23:31 AM
He never ceases to amaze me.

To infinity, and beyond!  (OK, so that's Buzz Lightyear, but Superman might have said it too)


Title: Re: Reece goes away for Christmas. Again.
Post by: celtic on May 18, 2011, 08:27:49 AM
Fantastic news


Title: Re: Reece goes away for Christmas. Again.
Post by: ripple11 on May 18, 2011, 09:28:50 AM

Really great to hear this news.

Bring on Florida  :)


Title: Re: Reece goes away for Christmas. Again.
Post by: mondatoo on May 18, 2011, 10:18:08 AM


Title: Re: Reece goes away for Christmas. Again.
Post by: Tonji on May 18, 2011, 10:29:06 AM
Absolutely wonderful  :)


Title: Re: Reece goes away for Christmas. Again.
Post by: the sicilian on May 18, 2011, 10:40:38 AM


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on May 18, 2011, 10:41:21 AM
Fantastic News


Title: Re: Reece goes away for Christmas. Again.
Post by: Karabiner on May 18, 2011, 10:44:39 AM
Fantastic News


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on May 18, 2011, 11:01:07 AM
Oh man - absolutely delighted for ye!!! 

Can understand the hesitation in getting excited because he sure has been through it and back...and you've all been there too.  But I can't help getting a bit giddy at this news.  Really am delighted.  Hugs to the wee man and the rest of ya.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: technolog on May 18, 2011, 09:08:16 PM
Bloody brilliant news!

Enjoy the trip. I'm really looking forward to visiting and finally getting to meet the young fella.


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on May 18, 2011, 10:07:01 PM


Title: Re: Reece goes away for Christmas. Again.
Post by: Robert HM on May 18, 2011, 10:12:18 PM


Title: Re: Reece goes away for Christmas. Again.
Post by: Shogun112 on May 18, 2011, 10:18:42 PM
Great news Mo xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Redbull on May 19, 2011, 05:03:58 PM
Great news Mo xx

 ;applause;


Title: Re: Reece goes away for Christmas. Again.
Post by: outragous76 on May 19, 2011, 05:46:36 PM


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 20, 2011, 09:45:45 AM
National Green summat or other day today at Reece's School. The children were all told to go to schoolin something green.

All the other kids are there wearing a green T Shirt, Reece turns up in his Incredible Hulk outfit.


Title: Re: Reece goes away for Christmas. Again.
Post by: cdw1111 on May 20, 2011, 09:48:54 AM
National Green summat or other day today at Reece's School. The children were all told to go to schoolin something green.

All the other kids are there wearing a green T Shirt, Reece turns up in his Incredible Hulk outfit.

Made me smile


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on May 20, 2011, 09:49:15 AM
National Green summat or other day today at Reece's School. The children were all told to go to schoolin something green.

All the other kids are there wearing a green T Shirt, Reece turns up in his Incredible Hulk outfit.

Don't make him angry....


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 20, 2011, 12:33:43 PM
Thanks for all the responses from Tony's post. Much appreciated.

How we have come through this  roller-coaster of years I will never know,  well never mind us,  Reece where the heck does he find the strength from. There's not a lot gets past him, he is very wise and incredibly funny for his age. Takes it all in his stride.
Monday at Hospital all he was worried about was going back to theater, he thought we were tricking him until I promised him cheesy chips for his tea then he knew Grandma wasn't fibbing.

 The joy on Mr Puntis's face when he saw Reece is indescribable, he is so very pleased with Reece and the success story he has become.

I always find it a little hard to post on long term plans as they seem to change from week to week then I think I looked silly for posting when it changes again so quickly, hopefully the plan in place now will not have to change.

The Holiday.

We will not be taking any TPN on holiday with us, but will still take intravenous fluids and Gastro feeds for him. The intravenous is to ensure he doesn't dehydrate in the heat and the Nutrini (gastro feed that goes into his tummy via a peg button) gives him a few calories, these will be infused like at home over 10 / 12 hours per night. Depending on how he is I might not give the intravenous ones every night.

In himself he does get tired quicker now he is off TPN, which is not ideal for his holiday but Mr Puntis decided not to put him back on for his holiday, which would have boosted him up thus he would enjoy it more I personally think, but that is the decision so that is the way it will be. I really do worry too much.

Thomas Cook came back to us yesterday after I had sent off the medical equipment list and have increased the medical hold luggage to 40 kg free, this helps a lot although we did have to pay for 4 on the booking day. At least now we will have ample room for it all. Saying this, getting to the airport is somewhat an ordeal, there is no way all 4 of us plus up to 6 suitcases will go in our old banger so I still have to suss that side of it out yet. We were going to all go on the train but too much stuff plus it would add even more journey time for Reece. Thomas Cook can not increase our hand luggage past 5kg which is a little worry as we have to take emergency medical equipment and pumps on board with us.

The Nutrini supplier is transporting that side over and the person who we pick the keys up from have said she will help all she can by accepting delivery and keeping it safe until our arrival. We still have to take some on board with us just in case it gets lost along the way.

We have letters galore off the hospital to travel with in order to show UK/US customs etc, to get all the meds through. There has been so much to think about and it is nerve racking thinking I may have over looked something.

Make A Wish have donated 3 day passes for Magic Kingdom, 2 day passes for Universal and 1 day pass for Seaworld, we have to collect them on different days from the individual parks and can use them anytime over the two weeks we are there.

As we know he wants to swim with the Dolphins so I contacted Discovery Cove via email to ask if there would be anyone that could take photos of him in there as Stacey will be going in with him too but at £180 pp for a swim ticket and £105.pp for a non swim ticket it seems a bit steep to pay for myself and Darren to go in as spectators. Alas they never returned my email, I suppose they have to treat all the same. I shall be using Mr Anons ( thank you again) donation towards this day I think.

Reece is so very excited non stop talking about it, he has a calender which he marks off the days by stickers. He also chose some Spiderman sun glasses and reckons he is going to wear them and his Spider top so that when he sees Spiderman he will look cool. I hope for my sake he is there lol.

I am going to try and post a couple of pics from Tuesday as he went on a school trip dressed Victorian.

I would just like to take this opportunity to thank each and every one of you for making this trip possible because without a doubt it would not have been happening without all your help.

Thank you all so very much.

Maureen. xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 20, 2011, 12:35:52 PM
.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 20, 2011, 12:37:06 PM
.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 20, 2011, 12:37:41 PM
.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 20, 2011, 12:38:45 PM
I am not too hot on this photo posting stuff.


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on May 20, 2011, 12:40:17 PM
brilliant!


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 20, 2011, 12:43:17 PM
Just to give you a little insight to the organizing and carrying eqipment. This is part of one of our medical letters.


Reece has complex health care needs and has a Broviac central venous
feeding line and a gastrostomy feeding tube to give nutrition and fluids
to maintain his health and well being. Reece’s mum Stacey Dunne and
grandma Maureen McDonnell will be carrying medical equipment and
supplies with them whilst travelling abroad including:

Hand Luggage - carrying essential medical drugs and fluids to maintain
hydration and well being whilst travelling
In a cool bag with ice pack Approximate weight ………..kg
v   IV bag of Parenteral Nutrition solution (approx volume 1250mL)
v   Gentamicin & Heperin prefilled syringes (Approx 20mL)
v   Enteral syringes prefilled with water

In Hand luggage
v   Intravenous infusion pump, carry pack and charging lead
v   Intravenous fluid 500mL bags x 2
v   Intravenous feeding giving sets
v   Prefilled syringes of Sodium Chloride 0.9%
v   10ml ampoules of 0.9% Sodium Chloride
v   Gentamicin & Heperin ampoules
v   Enteral feeding pump
v   Enteral syringes
v   Enteral feeding tubing
v   Nutrini enteral feed for flight 3 x 500mL packs
v   Dioralyte solution (approx 400ml)
v   Sterile water (approx 100ml)
v   Oral medication
v   Dressing packs and sterile gloves
v   Alcohol hand rub gel
v   Sanicloth 2% Chlorhexadine wipes
v   Smart-sites
v   Surgical tape and dressings (Tegaderm, Mepore & Parafilm)

Hold Luggage
v   Battery pack and charging lead for IV pump
v   Parenteral Nutrition solution, stored in cooler box with ice
packs to maintain temperature at 4°C during transportation
approx weight …………kg
v   10 x 500mL bag,of Intravenous fluid containing 5% Glucose 0.45%
Sodium Chloride & 10mmol KCL
v   Intravenous feeding giving sets
v   Syringes and needles (various sizes)
v   10ml ampoules of 0.9% Sodium Chloride
v   5ml ampoules of Heparin Sodium 10 units per ml
v   Prefilled syringes of Gentamicin in cool box with parenteral
nutrition
v   Prefilled Sodium Chloride 0.9%
v   Urokinase 25 000ui + Diluent
v   Absolute Alcohol for injection
v   Dressing packs and sterile gloves
v   Alcohol hand rub gel
v   Liquid soap
v   Oral medication
v   Azowipes
v   Sanicloth 2% Chlorhexadine wipes
v   Smart-sites
v   Surgical tape and dressings
v   Enteral syringes
v   Enteral feeding tubing
v   Nutrini enteral feed for flight 12 x 500mL packst



Title: Re: Reece goes away for Christmas. Again.
Post by: celtic on May 20, 2011, 12:48:28 PM
Great stuff mo, 7 seater cab should get all your gear in hopefully.

Looking forward to the pics.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 20, 2011, 12:52:43 PM
Great stuff mo, 7 seater cab should get all your gear in hopefully.

Looking forward to the pics.

I'm not, have you seen my efforts. ;ashamed;


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 20, 2011, 01:04:29 PM
Great stuff mo, 7 seater cab should get all your gear in hopefully.

Looking forward to the pics.

Just phoned round a few £60 e/w. I think not.


Title: Re: Reece goes away for Christmas. Again.
Post by: celtic on May 20, 2011, 01:57:05 PM
Great stuff mo, 7 seater cab should get all your gear in hopefully.

Looking forward to the pics.

I'm not, have you seen my efforts. ;ashamed;

Ha, im still trying to work out how to upload some from Feb. At least you managed something ;)


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on May 20, 2011, 03:45:54 PM

On the basis that the people carrier required to take Reece & his Disney Raiding Party to & from home to the airport costs £60 each way, a donation of £120 has been made.

This donation will be transferred to Maureen, probably over the weekend, via myself as middle man, as soon as it can be arranged.

The donor is a very well known & prominent blonde, but does not wish his/her name mentioned on the Thread. I will, however, let Maureen know who it is. This blonde has provided monetary & practical help to Reece for several years now.

Many many thanks to the donor.

 ;hattip;


Title: Re: Reece goes away for Christmas. Again.
Post by: mondatoo on May 20, 2011, 04:11:49 PM

On the basis that the people carrier required to take Reece & his Disney Raiding Party to & from home to the airport costs £60 each way, a donation of £120 has been made.

This donation will be transferred to Maureen, probably over the weekend, via myself as middle man, as soon as it can be arranged.

The donor is a very well known & prominent blonde, but does not wish his/her name mentioned on the Thread. I will, however, let Maureen know who it is. This blonde has provided monetary & practical help to Reece for several years now.

Many many thanks to the donor.

 ;hattip;

Well played whoever it is and great updates.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 20, 2011, 07:02:06 PM
He had a great day but once again has come home with a scratch n bruise on his face.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 20, 2011, 07:08:30 PM
The donation to for the Taxi has made a massive difference. It now means we can all travel together to Manchester as I was thinking along the lines of booking the car in for 2 weeks parking and the three of them going in it then me traveling by train with a couple of cases.  I have thanked the anonymous person, but from the bottom of my heart I just want to let it be known just how grateful we all are.

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 20, 2011, 07:09:11 PM
Why do my pics come out as thumb nails. Anyone?


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on May 22, 2011, 11:22:58 AM

The anon donation of £120 has now been transferred to Maureen. I have also received the original donation in my Bank Account.

Thanks to all involved.



Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 22, 2011, 10:15:03 PM
Thanks from me too. Booked Taxi with Timmys Taxi of Huddersfield, reliable and cheapest firm I know of,  they carry me home from late shifts when Reece sleeps and I cant take the car.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 22, 2011, 10:29:40 PM
Thanks from me too. Booked Taxi with Timmys Taxi of Huddersfield, reliable and cheapest firm I know of,  they carry me home from late shifts when Reece sleeps and I cant take the car.

It would be a lot less had we just required a regular cab.


Title: Re: Reece goes away for Christmas. Again.
Post by: technolog on May 24, 2011, 06:20:44 PM
Absolutely fantastic news Mo.

I'm looking forward to the pics too. If Dawn & I make it up to see you we'll give you a Photobucket crash course.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 24, 2011, 07:28:55 PM
Absolutely fantastic news Mo.

I'm looking forward to the pics too. If WHEN Dawn & I make it up to see you we'll give you a Photobucket crash course.


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on May 24, 2011, 08:22:21 PM
Great News, Reece does look really well xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on May 24, 2011, 08:44:44 PM
Great News, Reece does look really well xx

Thanks Dewi, about time me n Daz ventured over to your pastures. Will try after holiday n book into that village you showed us then meet up with you. xx

( that's if you want to ).


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 01, 2011, 05:13:19 PM
Remains off TPN. Cross them fingers.


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on June 01, 2011, 05:16:52 PM
Great News, Reece does look really well xx

Thanks Dewi, about time me n Daz ventured over to your pastures. Will try after holiday n book into that village you showed us then meet up with you. xx

( that's if you want to ).

obv xx


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on June 01, 2011, 06:45:10 PM
Remains off TPN. Cross them fingers.

Them's crossed.


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on June 01, 2011, 06:48:36 PM
Remains off TPN. Cross them fingers.

Them's crossed.

and mine x


Title: Re: Reece goes away for Christmas. Again.
Post by: technolog on June 01, 2011, 08:39:47 PM
Remains off TPN. Cross them fingers.

Them's crossed.

and here.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on June 01, 2011, 08:57:53 PM

Ditto  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: leethefish on June 01, 2011, 09:08:38 PM


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on June 01, 2011, 09:12:23 PM

Be careful when crossing your ditto's ladies.


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on June 02, 2011, 09:07:59 AM

Who needs TPN?

These were taken, I think, on Monday. Sorry my reproduction of them is a bity naff, but you get the picture. Or pictures.



Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on June 02, 2011, 10:20:58 AM
GG TPN, GTFO.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on June 02, 2011, 12:13:31 PM
He looks fantastic!!!  Hugs to the lot of ya Mo.  x


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 02, 2011, 12:28:55 PM
TY,

The top was was taken last night, this morning he went swimming with Grandad and ordered me to stay home and cook a " full family breakfast", which i obv did.

He likes it buffet style, this way his plates is empty so he fills it as he wants to, and boy does he eat. He started off with Boiled Eggs n Soldiers, then had fried bread x 3 1/2's, beans with cheese ( everything has to have cheese atm), fried egg a bite of bacon, and hash brown. THEN, yogurt, yakult, and a toffee bun cake. Healthy eating is not on the agenda at the moment, the idea is to just get what we can into him. He doesn't absorb all what he eats but he must be getting some calories from it or i would think by now his weight would have dropped dramatically again. This morning he was 18.4.



Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on June 02, 2011, 03:08:52 PM
Sounds yummy to me.


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on June 02, 2011, 03:18:15 PM
Awesome!


Title: Re: Reece goes away for Christmas. Again.
Post by: rex008 on June 02, 2011, 11:13:37 PM
TY,

The top was was taken last night, this morning he went swimming with Grandad and ordered me to stay home and cook a " full family breakfast", which i obv did.

He likes it buffet style, this way his plates is empty so he fills it as he wants to, and boy does he eat. He started off with Boiled Eggs n Soldiers, then had fried bread x 3 1/2's, beans with cheese ( everything has to have cheese atm), fried egg a bite of bacon, and hash brown. THEN, yogurt, yakult, and a toffee bun cake. Healthy eating is not on the agenda at the moment, the idea is to just get what we can into him. He doesn't absorb all what he eats but he must be getting some calories from it or i would think by now his weight would have dropped dramatically again. This morning he was 18.4.



I want to visit Chez Mo.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 06, 2011, 04:56:28 PM
Reece needs some one times please.

Not in the best way today. Seemed quite, off his food and generally laggy. His bloods were due to be taken at lunch time. They take his bloods through his central line but today it hurt Reece which is not good so tomorrow he has to go to Leeds and have it scanned etc. Please let it be ok.

Been a crappy week all round really. The car decided to go into early retirement few major things wrong incl catalytic converter. Still at garage. Plus a few other things now poor Reece.


Title: Re: Reece goes away for Christmas. Again.
Post by: Redbull on June 06, 2011, 05:03:08 PM
Sorry to hear :(  Good wishes to Reece x


Title: Re: Reece goes away for Christmas. Again.
Post by: celtic on June 06, 2011, 05:04:53 PM
Sorry to hear :(  Good wishes to Reece x


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on June 06, 2011, 05:05:13 PM
+1 to that.

Hope it goes as well as it can for him.


Title: Re: Reece goes away for Christmas. Again.
Post by: DUNK619 on June 06, 2011, 05:22:41 PM
best wishes to reece xxxxx


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on June 06, 2011, 05:51:37 PM
Ugh.  Will be funking hard for ye Mo.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: outragous76 on June 06, 2011, 05:52:59 PM
GL reece


Title: Re: Reece goes away for Christmas. Again.
Post by: technolog on June 06, 2011, 05:59:35 PM
GL reece

One time for the little fighter!


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on June 06, 2011, 06:03:44 PM
best wishes to reece xxxxx


Title: Re: Reece goes away for Christmas. Again.
Post by: b4matt on June 06, 2011, 06:27:27 PM
Hi Mo,

Sorry to hear of another set back to the wee man. Please give me a call if there is ever any help you guys need. xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: HOLDorFOLD on June 06, 2011, 11:45:46 PM
Hope all goes well for the wee man  xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on June 07, 2011, 11:46:36 AM

He never lets us down, he'll be fine.

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on June 07, 2011, 12:23:40 PM
News just in from Mo who asked me to post...

HE'S GOOD!!!   ;yippee; ;yippee; ;yippee;

Reece had a scan this morning.  The line was freed and hasn't split or moved and all is well again.  Phew.  Back to concentrating on his holiday plans.

Sooooooooooooo happy for ye Mo!  xx







Title: Re: Reece goes away for Christmas. Again.
Post by: mondatoo on June 07, 2011, 12:54:59 PM
Excellent news


Title: Re: Reece goes away for Christmas. Again.
Post by: celtic on June 07, 2011, 12:58:29 PM
Excellent news


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on June 07, 2011, 01:14:07 PM
Ship!


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on June 07, 2011, 01:48:56 PM
good news xx


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on June 07, 2011, 02:04:10 PM
Never in doubt.


Title: Re: Reece goes away for Christmas. Again.
Post by: ripple11 on June 07, 2011, 06:21:44 PM
 :)up


Title: Re: Reece goes away for Christmas. Again.
Post by: technolog on June 07, 2011, 06:23:50 PM
good news xx

So pleased for you all :)


Title: Re: Reece goes away for Christmas. Again.
Post by: b4matt on June 07, 2011, 07:24:02 PM
That is excellent news. xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 08, 2011, 02:42:18 PM
Getting close now, been and sorted some money out today, got one of them Post Office cards that act like a Credit Card so to speak, you load it up here min £50 max £5k ( max £750 until you activate it the next day), we got exchange rate of 1.5960, slightly less than we got at The Money shop for our cash, but this card is good I think although never used one before. It seems you can use it anywhere the Master Card logo is, plus draw up to $500 p d at a charge of $2.50 per withdrawal. Your money is protected if it gets lost or stolen and another card is del to you, plus your identity is protected so they say as it is not linked to a bank account.

Plus we thought it good if on the very very off chance he gets poorly and can't come home but we had to, Stacey can keep the card there and we can top it up from here.

Any thoughts before I put more on it?

http://www2.postoffice.co.uk/travel/travel-money/travel-money-card


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on June 08, 2011, 03:03:15 PM
My daughter used one and had to accept a very poor exchange rate for her unused dollars when she got home. (Normally I would sell them on at spot)


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 08, 2011, 03:12:56 PM
Right, thought that, we were thinking of trying to roughly put on the money for which we hope to spend but also taking my cash card plus some $.


Title: Re: Reece goes away for Christmas. Again.
Post by: rex008 on June 08, 2011, 04:10:47 PM
My daughter used one and had to accept a very poor exchange rate for her unused dollars when she got home. (Normally I would sell them on at spot)

Can you withdraw any spare cash on your last day then sell it when you get home? Assuming its worth it to lose the $2.50?


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 08, 2011, 04:45:28 PM
Yes. You can also just leave it on for 3yrs and the rate remains locked in.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 11, 2011, 01:19:48 PM
Been having a bit of a nightmare with Discovery Cove for the swim. We were after finding out if they would let us just pay for a swim as the rest of the facilities we would possibly not use due to Reece's limited time in the water. They eventually replied saying get a letter off the hossy and they could fund it so we did, 2 weeks later umpteen calls from Dawn and myself with no response from them and the park becoming booked up most of the days we were there I finally got an email almost 4 weeks later last night saying no, they cant help. No problems though I have managed to book 2 swims and 2 non swims for the 23rd. Using Mr Annons donation for this. Thanks Mr |nnon. xx.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on June 11, 2011, 08:02:29 PM
Sigh.  Fecking ridic that they wouldn't help out and fair play to Mr. Anon for getting ye there.  Nearly there now.  Hope ye have a brilliant trip!!!  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 12, 2011, 04:19:16 PM
Massive mixture of emotions at present. Excitement, nervousness, apprehensive, managed to pack his medical equipment into the two comp suit cases the airline have given. Hand luggage meds are a bit iffy but we have to carry it so we will see on the day what they say.

Still  so much to look into re assistance but that cant be done 'til we arrive. I have boobed on one thing i know of so far, that is his blue badge parking, apparently I should of applied via email which i didn't know but i believe we can apply once there at a tax office, just need to find one lol. Then they give you a Red tag or summat similar to our blue one for $15.

I am now on A / L for 19 days, at long last, so much has gone tits up this week that if I tried to tell you all you would not believe it, so my leave has just come at the right time.

We have decided not to take laptop with us as way too much to carry as it is. Will try to update a little from a cafe or similar.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 13, 2011, 08:45:46 AM
All this time he has stayed away more or less from hossy then bang. Off he goes in again this morning. We do not know quite what is wrong but he is very sleepy and lethargic plus his walking is not right. Unreal.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on June 13, 2011, 10:40:21 AM
All this time he has stayed away more or less from hossy then bang. Off he goes in again this morning. We do not know quite what is wrong but he is very sleepy and lethargic plus his walking is not right. Unreal.

Hang in there Mo.  Hopefully it's just something small.  Would all the excitement of the trip get him a bit worked up?  Fingers crossed and let us know how he gets on.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: kinboshi on June 13, 2011, 10:52:48 AM
All this time he has stayed away more or less from hossy then bang. Off he goes in again this morning. We do not know quite what is wrong but he is very sleepy and lethargic plus his walking is not right. Unreal.

Hang in there Mo.  Hopefully it's just something small.  Would all the excitement of the trip get him a bit worked up?  Fingers crossed and let us know how he gets on.  xx

Going to use my 'One time' now.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 13, 2011, 03:14:58 PM
Well, he still has permission to go on holiday.

The hossy reckon he has some swollen glands so that may be the cause.

I am not convinced atm.

They have not taken his Blood Cultures, this would show up any possible line infections starting.

So just to see how he goes on tomorrow. No school now until after holiday.

Still have concerns but will try and go with the flow.





Title: Re: Reece goes away for Christmas. Again.
Post by: Indestructable on June 13, 2011, 05:43:05 PM
Fingers crossed he can go.  :)up


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on June 13, 2011, 10:45:03 PM
Fingers crossed month. Let reece once again 'do a reece'!


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on June 13, 2011, 10:46:16 PM
Fingers crossed month. Let reece once again 'do a reece'!


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on June 13, 2011, 10:56:22 PM

I'm sure he'll be just fine, Mo.

Fingers well & truly crossed.

When do you go?

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: celtic on June 13, 2011, 11:20:10 PM

I'm sure he'll be just fine, Mo.

Fingers well & truly crossed.

When do you go?

xx

2 days!


Title: Re: Reece goes away for Christmas. Again.
Post by: TRIP5 on June 14, 2011, 03:32:13 AM
Everything and more crossed for you

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: leethefish on June 14, 2011, 06:27:16 AM
Fingers crossed he can go.  :)up


Title: Re: Reece goes away for Christmas. Again.
Post by: celtic on June 14, 2011, 07:19:12 PM
How is Reece today?


Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on June 14, 2011, 07:23:33 PM
Everything and more crossed for you

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 14, 2011, 09:05:24 PM
He is OK, not the best of energy but not the worst.

This is what I kind of feared really, if he was on TPN he would have been full of it, but he isn't so his levels are quite low. This afternoon he slept for 3 hours after almost no energetic activeness. He will no doubt struggle over there, I anticipate not doing half what he possibly could have done if on TPN. BUT as we all know TPN is not the answer long term.

We will take it at his pace, we will do what we can and not push it.

Loads of stuff has gone wrong over the last week so much so I think someone out there has a little voodoo doll of moi, but hey, I can take it.

 He is now in the bath, chilling out playing figures with Grandad,  going to put him on enteral feed tonight then taking enough in hand luggage to put him on enteral and intravenous on board if need be.

Please..if there is a travel God, let me have remembered all Reece's stuff. Ours is no biggy we can get it there, his though is a different story.



Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 14, 2011, 09:09:38 PM
Taxi ( from another anon donation) arrives at 05.30 we shall be up very early to be prepared.

IF I have a one time left please let this holiday run as smoothly as possible, and Reece have the best time ever. That is all I ask.


Title: Re: Reece goes away for Christmas. Again.
Post by: celtic on June 14, 2011, 09:11:33 PM
Good luck with it Mo, hope it all goes well, and Reece has a great time.

Updates ftw!!


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on June 14, 2011, 09:12:43 PM
XX


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 14, 2011, 09:16:37 PM
Wont be too many updates as cant take laptop as hand luggage is ltd to 5k pp.

Anyway, Stacey wants to post some words but will do so in my name.


Title: Re: Reece goes away for Christmas. Again.
Post by: ripple11 on June 14, 2011, 09:17:26 PM
Good luck, lots of fingers and toes crossed.

I really hope everyone can have a brilliant holiday.


Title: Re: Reece goes away for Christmas. Again.
Post by: mondatoo on June 14, 2011, 09:18:06 PM
Hope you all have a great holiday, enjoy it.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 14, 2011, 09:30:52 PM
Hi its Stacey here.
Well where do i even start to begin... there are no amount of words that i could say that could thank everyone for all the help and support they have given towards my little Prince Reece and the family. Reece has been through so much and for this holiday to come true, has only been made possible by your extremely kind donations. This is what Reece has been looking forward to for so long now, and the family can not wait to see his reactions when we get their (especially when he see's Spiderman- his hero and the dinosaurs). Again thankyou for everything and we will get the pictures on of Reece's trip when we return.
Massive thankyou.
Stacey
xx   


Title: Re: Reece goes away for Christmas. Again.
Post by: celtic on June 14, 2011, 09:40:07 PM
 :hello: Stacey!

Looking forward to the report and pics when you return.

Have a great time all.


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on June 14, 2011, 09:41:12 PM
Here's to the most magical holiday ever for ye.  Safe travels and enjoy.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Tonji on June 14, 2011, 10:51:32 PM
Have the greatest holiday ever all of you.


Title: Re: Reece goes away for Christmas. Again.
Post by: technolog on June 14, 2011, 11:16:52 PM
Have a brilliant time you lot!


Title: Re: Reece goes away for Christmas. Again.
Post by: GreekStein on June 14, 2011, 11:39:23 PM
Have a great trip!


Title: Re: Reece goes away for Christmas. Again.
Post by: outragous76 on June 14, 2011, 11:42:20 PM
Have a great trip!


Title: Re: Reece goes away for Christmas. Again.
Post by: tikay on June 15, 2011, 01:31:22 AM

The day we feared may never arrive has arrivened.

Glory be. Enjoy, we will all enjoy it every bit as much as as you all will.

And to all the blondes who have given support, be it moral or financial, or "just" words (& words mean so much) thank you.



Title: Re: Reece goes away for Christmas. Again.
Post by: Dingdell on June 15, 2011, 12:45:53 PM

This. Can't wait to hear all about it xx


Title: Re: Reece goes away for Christmas. Again.
Post by: kinboshi on June 15, 2011, 12:53:15 PM
;mexicanwave;

Trip report with loads of photos when you get back :)up


Title: Re: Reece goes away for Christmas. Again.
Post by: Dewi_cool on June 15, 2011, 12:53:31 PM
hope u all have a fantastic time xx


Title: Re: Reece goes away for Christmas. Again.
Post by: Supernova on June 15, 2011, 04:47:36 PM

xxx


Title: Re: Reece goes away for Christmas. Again.
Post by: amcgrath1uk on June 15, 2011, 07:51:50 PM
Hope you all have an awesome time :)


Title: Re: Reece goes away for Christmas. Again.
Post by: cia260895 on June 15, 2011, 09:03:03 PM
WOW just caught up with the last couple of months.


Best ending ever

ALL of you

 ;letsparty; ;letsparty; ;letsparty; ;letsparty; ;letsparty; ;letsparty; ;letsparty; ;letsparty; ;letsparty; ;letsparty; ;letsparty; ;letsparty; ;letsparty; ;letsparty; ;letsparty; ;letsparty; ;letsparty; ;letsparty; ;letsparty; ;letsparty; ;letsparty; ;letsparty; ;letsparty; ;letsparty; ;letsparty; ;letsparty; ;letsparty; ;letsparty; ;letsparty; ;letsparty; ;letsparty; ;letsparty; ;mexicanwave;



Title: Re: Reece goes away for Christmas. Again.
Post by: TRIP5 on June 17, 2011, 02:10:49 AM
Beautiful!!!

Welcome to Blonde Stacey..I hope Reece has THE MOST AMAZING holiday!!!

Tired or not I'm sure he'll have the bestest time EVER!!!!!!

Amazing what Reece continues to smile through!!

Can't wait to see the piccy's..Hope you've packed the flatcap ;)

xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 20, 2011, 03:15:53 AM
Quick update.  He is unbelievable. Coping fantastically full of life enjoying every moment. Not seen him this well in so long.  We honestly never thought for one minute he would be this well. He is coping on enteral feeds and food alone. Not given him any intravenous since we have been here.


Can anyone tell me if I use my desire to connect to net via WiFi and not mobile connection is it free? 

Off to universal tomorrow. Tried to textTony with pic but won't send.  Not sure why. 



Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on June 20, 2011, 07:53:45 AM
Quick update.  He is unbelievable. Coping fantastically full of life enjoying every moment. Not seen him this well in so long.  We honestly never thought for one minute he would be this well. He is coping on enteral feeds and food alone. Not given him any intravenous since we have been here.


Can anyone tell me if I use my desire to connect to net via WiFi and not mobile connection is it free? 

Off to universal tomorrow. Tried to textTony with pic but won't send.  Not sure why. 



Fantastic news Maureen. Take plenty of pictures.

Yes. If you connect via WiFi it's free. Just go into settings - mobile networks and make sure "Data roaming" is unticked.



Title: Re: Reece goes away for Christmas. Again.
Post by: Claw75 on June 20, 2011, 07:57:20 AM
great stuff!


Title: Re: Reece goes away for Christmas. Again.
Post by: Laxie on June 20, 2011, 08:24:22 AM
Awwwwww, that's brilliant news Mo!  Delighted for ye and look forward to the trip report when you get back.  xx


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 20, 2011, 11:55:15 AM
Ah. pictures that's another story.  the cam we brought with us has no charger, well its the wrong one. My relatively new camera is playing up. So mainly having to use my phone. Just the way my life in general runs really. Going to try n buy a new charger.
The sat mac works great BTW. God send.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 20, 2011, 12:04:26 PM
Scary thing I saw last night right outside our door a bloody big black snake slithered into the bush. My feet left the floor.

It is 100 plus and he just keeps going. We are astounded by his energy.


Title: Re: Reece goes away for Christmas. Again.
Post by: RED-DOG on June 20, 2011, 12:13:35 PM
Buy a new basic compact point & shoot digital for ~ $70. It will be worth it.


Title: Re: Reece goes away for Christmas. Again.
Post by: Kev B on June 20, 2011, 12:21:18 PM
Have the most fantastic time all of you.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 21, 2011, 03:06:50 AM
Ok so missed Toms advice on the point n view thing.
Got ripped off in a shop bought a new battery for camera Kodak 7001 but not Kodak battery just a similar. Plus a new 16 bit memory card for my phone as when we got to universal today it said sim full.  Total cost 80 bucks. Now gone on net n that's when I realised the swine has took me for a ride. Wouldn't mind too much but my camera still doesn't work just keeps turning off as soon as I turn it on. At the park the only pictures we could get was by buying a disposable jobbie for mega bucks. But needs must. We couldn't possibly have missed him meeting spider man. plus as a back up buying a photo from them just incase we didn't get one on disposable. Just so much didn't want to miss out.
I am going back to the rip off man tomorrow but not holding my breath too much.

One the good side he did lots of rides. We get to go straight to the front of rides no waiting which is brilliant as the heat is a killer  for him.  Universal are more accommodating on this point than magic kingdom. We just show our make a wish badge and away we go.

He went on the tower of terror ride a day back, His choice  but it has totally freaked him out n now he is scared of a lot of rides.

Too small for most incl Harry Potter but still gets to go on lots. Not seen the night parade yet as only one day left at magic so saving it for when I think he can stay up late.

Thursday he goes   swimming with the dolphins, his little legs are red now even after plastering block on him. He is very pale so tends to burn as his skin is not used to sun.

Eating side well still trying almost everything once which to us is just brilliant.  Loves t bone off Grandads plate but best he loves to go to a buffet and chose his own food. Shouting " come on Grandad let's go back and get something else. 



Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 21, 2011, 03:20:05 AM
We went to the beach yesterday, the gulf n the water was so warm he loved it. Although we could only stay an hour due to heat and he decided he wanted to go right in up to his neck so his dressing got wet.

Thinking possibly seaworld tomorrow or maybe back to universal as we have a 2 day pass for there. Need to rest on Wednesday read for discovery cove.
loving it. Xxxxxx


Title: Re: Reece goes away for Christmas. Again.
Post by: leethefish on June 21, 2011, 07:20:38 AM
sounds great hope you all have loads of fun


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 26, 2011, 12:27:08 AM
Fun fun fun all the way.  He still hasn't had to have any intravenous and he won't either. He is coping fantastically I think he has cracked it I honestly can't see him needing TPN again. I think he has defied all odds.

The dolphin swim was great for him. Discovery Cove on the whole was one of the highlights.  We have gone all out and purchased the pro pics as where me n Daz were watching we were behind them. Plus we just paid for Himself and Stacey to go on the Safari at busch gardens so had to buy them pics too but its a once in a life time.

Like I said this would not of been possible without you all. Xx.


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on June 26, 2011, 12:31:26 AM
Can't post pictures off my HTC as it says they are too large. Anyone?


Title: Re: Reece goes away for Christmas. Again.
Post by: leethefish on June 26, 2011, 08:20:50 AM
Can't post pictures off my HTC as it says they are too large. Anyone?
i use this
http://pixlr.com/editor/


Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 13, 2011, 12:37:48 PM
Sorry the holiday report has taken so long coming but I am the first to admit I am not very good at write ups.

Where do I start, at the beginning seems the best place I suppose.

The day had finally arrived, we were up packed and waiting outside for the Taxi with our suitcases plus medical equipment. After seeing how tight a squeeze it was to get it all in a Taxi worrying thoughts started to creep in about the hire cars capacity.
Journey to the airport was somewhat speedy, it was during this Grand Prix warm up event on the M62 that  I discovered the break on the passengers side did not seem to work no matter how hard I slammed my foot against it.  Reece was sat contentedly in the back happy as Larry taking it all in his stride, Darren and Stacey either side of him peeing themselves laughing at co pilot moi.

Check in went smoothlyish, a few hiccups but we soon sorted it out. Glad we had a lot of medical letters with us, we had to prove every item was needed which we were taking into the cabin.

Lets jump to the flight.

We had medical seats both legs of the journey, the return ones were fantastic, mega space. We put Reece on his Gastro feed throughout the flight and also carried Intravenous fluids and a pump for if needed, however unbeknownst to us at this point, Reece did not need the Intravenous on the flight or the whole of the holiday. He has coped with just Gastro feeds nightly.

All through the flight Reece sat contentedly playing, coloring  or watching a movie. Not once did he moan, he was such a good lad we were so proud of him. After all it was not a short flight for his first time up there, about 9 1/2 hrs going. We took with us lots of butties and snacks etc as I knew he would not touch the food they sell, this turned out to be just great, he grazed away the whole flight.

Touched down in Sanford mid afternoon and proceeded to collect the car. After being firm and refusing this that and the other we got to collect our Impala, now then 100 f and there we are attempting to break the world record for cramming luggage, pushchair, holdalls and 4 folk into this poor little car. Darren said " nope this just aint going to work" , little did he know that when I have made up my mind it is going in then that's all there is to it, no arguing these cases had me to deal with, and dealt with them I did.

We arrived safely at the house, I had chosen Lucaya Village Resort for it's location and price. Very central to all the parks and walking distance for the Old Town, plus 3/ 10 min walk to many eateries. We only walked once actually as I had the privilege of meeting our first ever Snake right outside the door on our path. My feet left the floor, it was massive.This was just the first encounter there were other snakes that seemed to like our bushes.

The house was just fine, slept up to 10, everything we could possibly need including a laundry room so no dirties were brought home. Happy Days. Walmart just up the road, pool which Stacey and Reece got plenty of swim time in. He loved the pool, thought it was great, first time in an outdoor one. We stuck to the 30 min rule the hossy laid down so as not to get his line infected, although he asked if he could stay in longer he never kicked off when we had to say no.

On to the parks....

 

   

 


 



Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 13, 2011, 12:54:08 PM
We had to collect our tickets at the individual parks, Make a Wish had given us (for each of us) a 3 day hopper for Magic Kingdom, 2 day pass for Universal and a 1 day pass for Sea World.

On collecting them we were given what is called a G A C, Guest Assistance Card, plus a sticker thing for his push chair so that it can be used as a wheel chair. The pushchair was a god send, so was the GAC. We also took with us our Make A Wish badges that we had been sent, these came in very handy.

The GAC card was valid for a fortnight, we just had to show it to the staff at each ride and we could then use the wheel chair access point, however we soon learned that when they saw our badges along with the GAC, we were whisked to the front of every ride and sometimes for timing reasons we were put into a VIP room to wait out of the heat. Even when the characters were out for photos, we were put straight to the front, no waiting at all. Reece would never have coped waiting for hours on end so this was an absolute Godsend. Plus if Reece was too small for a ride we could still use it to get straight on as it saved him waiting for us, not as we did many rides,but it was there if needed.

Well he loved every minute of the parks. One of the highlights was him meeting Spider Man, he got star struck, he couldn't move he went speechless it was so funny. Piccy's to come.

The worst thing we did was to take him on The Tower of Terrorrrrrrrrr. His request but little did we know just how bad it was. It took both Stacey and Darren to keep him in his seat, then when the ride was over he was so shaken he clung to Darren, wrapped around his neck for a good half hour.  It put him off going on the rides really, every time he would need reassurance that it was a gentle ride. Then when he went on a roundabout he sat there not holding on as if to say this is a piece of cake ( or words to that effect).

We went to Busch Gardens and whilst there paid for him & Stacey to do the mini safari. Here's a few pic's to be going on with.

http://www.kodakgallery.co.uk/ViewSlideshow.action?&localeid=en_GB&collidparam=6345977950233.5920970902233.1310553560217






Title: Re: Reece goes away for Christmas. Again.
Post by: The_nun on July 13, 2011, 12:55:23 PM
Let me know if the link works, it's the only way I know how to post them without going into each one and re-sizing and I am not that patient. Plus view them as a slide show if you can.


Title: Re: Reece goes away for Christmas. Again.
Post by: boldie on July 13, 2011, 12:56:22 PM
Let me know if the link works, it's the only way I know how to post them without going into each one and re-sizing and I am not that patient.

I