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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

xxx

Best wishes, hope everything goes well for you and our thoughts are with you all.

Puts things into perspective at this time of year

best wishes x

Best of luck to Reece and the rest of the family over xmas and in 2008.

;goodluck;

best of luck and best wishes ;goodluck;

Best wishes. x

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

What a blow. I know everyone was psyched up for the 27th.

Chin up, we're thinking of you.

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..

I was so hopeful that the 27th would bring some good news for Reece and his family, all the best to them all. xx

Spot on as usual kind lady.

Best wishes

Geo

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.

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)

Best wishes.

Thinking of you all xx

best wishes

good luck little boy,you are strong,and have a fab family

Thinking of you both, and the little man.xxx

Our best wishes to a special family at this time of year.

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.

Praying for you all.

Fingers crossed for Reece.

Merry Christmas to all of you.

good luck reece and best wishes that you get to enjoy xmas day the way a 3yo shoud xx

Hope the wee guy has a wonderful christmas.

Best wishes

James & Debiie

Hope you all have a lovely christmas Mo, especially the wee lad.

Fingers crossed for the 27th xx

Our thoughts are with you all, Harmony lit a candle at Mass for Reece and we will be sending positive thoughts.

 ;hattip;

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 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.

great news Maureen.

 :)up xx

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 

Gald you were able to spend Christmas at home , goodluck for the 27th .

Charmaine

xx

Just a couple of pic's

.

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

Glad he's up and rareing to go .Good luck for the op,he''ll be in good hands.

Brendan. x

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.

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.

all the best Maureen.

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.

He's such a little trooper!  Thanks for the updates and give him a wee hug from us.

So glad all is going well for Reece Maureen  :)

Glad to hear he's doing well xx

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

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.

Good to hear the news, as always our thoughts go to you all.

Bainn & Harmony.

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.

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 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

great news.

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

So pleased everything is going well Maureen .

xx

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.

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

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

A big up to Mr Morobito.

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.

We hope 2008 is a wonderful year for Reece.

Best wishes

James & Debbie

My Best Wishes to you all Maureen.

Here's to a Happy 2008.

image removed

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

Hi Maureen,

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

Hi Bobby

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

no probs, when you feel up to it let us know how the little fella is doing.

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.

Thanks for the update Mo.

All the best. X

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

My oh my, what a story Maureen.

We look forward to the pics.

My thoughts are with you all, as ever.

xx

What tony said Maureen.

What a brave little man.

Looking forward to the pictures.

Vince

Thank you for keeping us updated on Reece Maureen , look forward to seeing the pics  :)

Ditto.  My thoughts and prayers are with you x

lots of love to you all Maureen xx

Hope 2008 is a good year for you all.
My familys thoughts are with you
xx

Thinking of all of you and hope the little man finds comfort soon.  Hugs

xx

Oh Maureen - there is nothing to say - you just seem to keep on going. Fingers crossed that Reece is soon feeling better. Tracey xx

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

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.

xx

Fantastic pictures..

Pictures look great Maureen, Thank You.

Reece is looking really good.

Best wishes to you all

taximan

Yes he does look well in these piccy's ..Thanks for replies.

lovely pics Maureen. I hope everything goes well. xx

Lovely pics Maureen , i love he's facial expressions  :)

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

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.

Still thinking about you all Maureen.

Best Wishes

Vince

Wonderful news Maureen, thank you. Please continue to keep us updated.

Thinking of you & yours, as always.

glad to hear things are progressing.  Will speak to you tonight no doubt xxx

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

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.

Thanks for the update Maureen, hope it all goes well.

Best wishes to you all

Thinking of you all, as always.

Photo's added..

Hope everything goes well over the next few weeks and months Maureen - Reece is such a trooper.

Lovely photos too xx

really lovely pics

all my love to you,darren and your whole family

FRAN  xxx

My thoughts and hopes are with you and that brave little man.

Good luck xxx

All the best :)

He's such a sweetie and always in our thoughts and prayers.  xx

Best wishes. x

Thank you for the update and great pics Maureen.

My thoughts are with you all there

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

Thanks all , for replies and pm's.x

 :)up :kiss:

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

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

bless him :)

such a sweet wee lad

thinking of you all and stay positive

Mel xx

All the best Maureen. xx

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

best wishes hope all goes well xxxxx

all the best M

all the best Maureen x

seconded

Thanks all, very much appreciated.x

All the best to you all

Fingers crossed Maureen, he is so stronge.

Will be thinking of all of you... especially him.  xx

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.

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.

I'll be funking for you big time.

Thinking of you, hope all goes well.

Thinking of you all, Maureen, especially young Reece.

Bainn & Harmony

Good luck fella x

;goodluck;

Blonde holds its collective breath......good luck Maureen x x x x x

Thinking about you
xx

 ;goodluck;

 ;goodluck; and god bless reece.

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 for that Tom

Wishing Reece all the best and his magnificent family

thanks for the update tom.

best wishes to the little fella

from me too

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

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.

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.

great news that he is ok. big hugs and kisses to all the family. hope everything will turn out well. xx

what a good little boy,hope a feels well soon god bless.,.,.,.,

top news Maureen

Really good news , hope Reece's recovery is speedy  :)

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

Says it all..get well soon Reece x

Thanks Tom. Fingers crossed for Reece.

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.....

Just keep fighting little chap.

Good Luck and get well soon.

Regards

M





 

all the best reece x

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

All the best Reece
xx

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

xx

What the man said.

All the best to the whole family
Lots of love
Philxx

Exactly.

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.

 :)up cariad mawr

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.

Thank god. This thread just made me cry at the office. Fingers crossed Maureen, he's a fighter. xx

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.

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

Thanks for the update Maureen - glad to hear Reece is recovering well.  Love you to you all xxx

Thinking about you and the little fella Mo. 

As always, our prayers and thoughts go to Reece and you all.

Bainn & Harmony.

Best wishes to you from myself and Dana.  ;pokergods;

x

Thanks Maureen.

Thinking of you x

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.

 ;goodluck;   :)up

What TJ said.

An awful lot for one family to go through for so long !! goodluck Reece and family xxxx

x

Thanks very much for the update, Tikay.

Thinking of you all, Maureen.

B&H xxx

Best wishes to the wholle familyxxxxxxxxx

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

Best wishes to you all.

vince

xox

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.

Thats great news, cheered me up no end that, thanks and good luck mate.

What he said..great stuff!

Theres a Colchester cuddle here with your name on it ... you can pass it on the Reece xx

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.

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

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..

Good news Mo.  Onwards and upwards :)up

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

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.

Thanks for update Mo.

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

Likewise here M

Fantastic news, but unsurprising from such a little trooper! xxx

Phew - general sighs of relief all round.  xx

Hes so Brave.

Good luck with it all Maureen & family.

Brent x

best wishes as always xxxxx

SuperHero :)up

Great News Mo.

Best wishes

xx

Absolutely DELIGHTED to hear that news!!!  Hugs to the wee lad and to the rest of you for looking after him so well.  xx

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)

Keep it up littl'un!

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

 :respect:

Hang in there. One step at a time.

Great news Maureen, love and hugs to all of you.

xx

Great news Maureen. Love to Reece xx
Hope to see you soon

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.

That's made my day.  Thanks Tony and keep smiling Reece!  xx

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.

Ship it ... fantastic news. xxx

 ;applause;

good news mo get your flights lol....

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

XXXXXXXXXX Love to all Mo

Lovely offer Sofa. 

N1  :)up

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

great news!

tremendous news.

Delighted to hear this news.

All the best

B&H xxx

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?

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

Was great to see you two yesterday.

All our thoughts and love,

Bainn & Harmony.

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.

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.

Give the wee peanut a hug from across the river for us.

xx

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

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

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.,.,.,.,.,

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.

Sounds like a normal toddler to me Maureen. :)

Great news that everything is going so well xx

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

Top stuff...great to hear he's doing soo well.

 ;woohoo;

Sounds like the wee man is doing great  ;mexicanwave;

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.

Fantastic news Maureen.

Best news anyone could wish for , so pleased for you all especially Reece  :)

We're so delighted to hear this news and hope you all have a wonderful weekend!

B&H xxx

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.

Hope you've enjoyed the week-end together.  xx

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.

 ;applause; ;applause; ;applause; ;applause;

Fantastic stuff :D

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

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

I should shun you really Silo, but I won't .

thanks for the updates Maureen - sounds like he's doing just great xx

Sounds like Reece has a very dedicated doc  :)

Geat news, Great doctor :)up

Pizza ftw  best wishes 2 the whole family xxxx

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.

was the Doctor in bed with you?

Well now Dewi, he is rather a handsome chap, Italion you know.

How's Reece getting along now, Maureen?

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.

Great stuff Maureen, continued best wishes to you all

best wishes as always xxxxx

xx

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.

good luck M . I heard guinnes is good for weight gain  ;)

all the best

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

Thinking of you all  xx

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

Brilliant news Maureen, all the best to you and enjoy yourselves :)

All the best to you all Maureen.

give reece all our love thinking of u all

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

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 

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.

Spot on postTom. Thankyou very much.
x

all our family thinking of both reece and ishmael. not a religous man but god be with you all

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.

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.

great news keep it up  :cheers: :)up

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.

Fantastic stuff!

Lovely, all the best.

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.

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

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

Stay positive Maureen, it will be OK.

XX

My thoughts exactly Maureen, keep us informed, please.

xx

What Red said..

Huggs Maureen xxxx

What the nice American lady said.

A big hug from a big guy to a tougher small one.

thinking of you all xx

xx

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?

Thinking of you all xxxx Phil

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.

Hang in there Chicka.  Thinking of Reece, you and the family always.  xx

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. ;)

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,,,,,,,,,

thinking of you all Maureen xx

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..,.

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!!!   

what Snatty said.

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

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.   /:-|

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.

Good luck a the hospital.  ;pokergods;

Hope it all goes ok today Maureen.  Please let us know. xxx

Ugh.  Thanks for the update and hope they can sort him out today.  Will keep prayers flowing for him.    xx

how hearts are with you

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.

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

Good luck Maureen  ;pokergods;

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

agreed

I'd say where Reece is concerned Antonio is his "GOD" no-one knows him better.

Good luck hope all goes well x

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

Thinking of you all Mo.

xox

Thinking of you all.........

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

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.

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

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.

Sorry Maureen, I misunderstood.

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

Sums up what I'm feeling as well.  

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

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

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

Billy's post says it better than I could.

xxxx

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.

((((((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

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

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.,.,

My thoughts are with you xxx

Thinking of you today and hope all goes better than has been over the last couple.  Give him a wee hug from us.  xx

My thoughts are with all of you Maureen

XX

Our thoughts are with you all.

Goodluck today Maureen.

Hope it goes well today Mo.

All our best wishes

James, Debbie & Samantha

xx

I feel strangley attached to this thread even though i've never met Maureen, gl with everything...

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

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

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

Great news..get well soon Reece x

XXX

get well soon reece all the best xxx

good news - thanks for letting us know xxx

Thx for the update Maureen

Big hugs to Reece

xx

Newyddion da iawn ;)

xox

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 

Fantastic news Maureen!

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

so glad that everything is comming along.,.i told you hes a fighter x

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

great news  :)up

So Glad the op went well Maureen , hopefully little Reece will be back on track very soon .

Your a star Nana Maureen xx

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!!

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.

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

cariad mawr xx

good news give reece our love

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

xx

Great news....the little fellow's a real figher... :)up

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

Maureen keep strong xx

Thinking of you both.

x

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;

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.#

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..

Jesus .... hope they are both ok apart from the bruises ...

me too!

Remember this boys n girls.. regardless of what the local police say....look after your own.

+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.

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.

.

Pob Lwc xxx

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

thinking of you all as always.  thanks for sharing the pics Tom/Tikay - they are lovely :)

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.

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!

 ;letsparty; ;mexicanwave;

N1  :)up onwards and upwards

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

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,,,

Lovely pics
Thinking about you all
xx

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's not boring...it's BRILLIANT news!!!  xx

Great news Maureen! Long may it continue.

great news hope it continues

You have to give him credit Maureen, he's a bloody trier.

xxx

Great news Maureen, really great news :)

+1

very good news maureen. long may it continue.

thanks for update.

all the best

+1

THAT has just made my year

what a great start to the week and long may it continue x

+2

+3..truly good stuff.

 ;hattip;

Keep on truckin'.

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

Wonderful!

xx

That's brilliant news. Well done young man.

Yeaaah! Good news Maureen. xxx

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.

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

Tx, They are receiving some training, in prep.

Better again!  Blimey.  Something so many other families take for granted, but a very big step for all of you. 

That's superb news Mo, really happy for the wee man  :kiss:

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

best wishes to the little fella hope all goes well

that made me  ;D

Him and me both

So pleased.

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.

Tx all.

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

Play school!

Marvellous. What progress he's made.

Fantastic news,we shall be thinking about the little fella next week.
I'am sure he will love it.
xoxox

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.
 

thanks for the update Maureen - sounds like he's doing great xx

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

A true miracle.

How is Darren now? And you?

xx

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.

Sooooooo glad he's doing as well as he is!  Thinking of ye all the time.  xx

Fingers crossed Maureen xx

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.

.

Pic's are too small doing it this way. I will have to make an album I think when more time.

.

Brilliant news Maureen! The pics are great too.

+1

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

Great news,great pics keep it up...

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,,,

+2, Great news Maureen :)

+ 3 :)

+ another

Thanks for the update Maureen, wow he looks great!!!

Thanks all.

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

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

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

Gr8 news and continued best wishes for the little mans future progress  :)up :)up

Great news.

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.

I am so so pleased with your news..........and if positiveness is not a word it should be

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

great news xx

I can't tell you how pleased I am.

XX

Bendigedig ;applause; ;applause;

Great stuff, have a great christmas!

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

Thanks all,

Not been to a panto yet Ding.

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

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

Fantastic news Maureen, I'm so pleased for all of you.

XX

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.

This is him now.

Brilliant maureen, just brilliant. Such lovely pitures of the brave little soldier.

Kev and Joo xx

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

What fantastic news..x

Bainn and i are delighted to hear this brilliant news.

+ another

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.

Big hugs to you all xxx

hope you're back on the up soon little man xx

It's Reece, not me.

UGH.  Thinking of the wee lad and all the family.  Speedy recovery.  xx

::)

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.

Da iawn, mae sion corn a'r ei ffordd xx

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.

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

Fingers crossed here x

1 time !!!

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

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.

Invite him to the next Blonde bash.. I'm sure there will be many people wishing to thank him!

Great news, hope it goes ok

+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.

That would be hard to time it right, this is no ordinary Doc, he is so committed to his work.

Amazing..

Good luck Reece.
 :)up

good luck reece m8

I'm so pleased for you all Maureen - hope you have a great Christmas together.

Good luck! x

Great news,and here's wishing you  all the best christmas xxxxxxx

Hope things go well for you all
xx

Fantastic news, go Reece.

Unbelievable........such good news....love and support to all of youxxxx

Tremendous news, Good Luck.  :)up

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.

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.

I don't need tips on weight, have u seen me. lol

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

Keep um coming PLEASE....

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!

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

lager and a vindaloo seem to have done me a treat

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.

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. 

Keep um on , we tried the prep thing b4

does he like guinness?

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

 
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.

Have a great Xmas Reece, so pleased that you are able to spend it at home with your wonderful loving family

+1

+2

 :)up

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....

+3...(well 4 if you count MrsB...)

Brilliant, just brilliant!

Merry Christmas everyone x

+1. Lovely pics - and something we might not have expected to see this time last year. Wonderful. xx

Happy Christmas reece.
 :)up

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.

Wow the best late xmas present ever.....FACT

wd to all who have made this happen.

Great news and lovely pictures :)up

This, big time

Wonderful pictures. Happy Christmas to you all. I like my bacon well done BTW.  ;D

{{{{{HUGS}}}}}

just fantastic!  love and hugs to all of you xxx

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

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

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.

Thanks for the update, sorry it wasn't more rosy. x

thoughts are with you all - I do hope a diet can be found soon that suits Reece x

That's a big worry Maureen.

On past form, he'll confound everyone & soon resume his recovery.

He will.

x

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.

best wishes with you all . keep ur headfs up and keep battling im sure reece will

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

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

I'm just convinced that he will be OK Maureen. This is just a little set back.

Chin up. xx

xx

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.

Ouch. Sorry to hear that Maureen.

Gimme a ring when you get a minute Maureen.

xox

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

fingers crossed for a speedy pick up xx

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.

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.

best wishes and lots of good vibes for Reece.

thinking of you all xx

Best wishes little man xx

Every good thought and best wish goes over to you Maureen xxx

Rooting for you Reecy boy.

 Best wishes and every little bit of luck going.

Keep fighting, son.

best wishes as always

Best wishes t

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.

All the best Reece. Thinking of you

{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}  Thinking of you wee man.  xx

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

All the best, positive thoughts. xxx

All the best to you all and all the luck in the world little Reece xx

Hugs and thoughts with you all.   Stay strong

xxxx

All the best little man........keep fighting till you see the light at the end of the tunnel...........get well soon.

Hang in there little guy, you can pull through we're all rooting for you.

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

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.

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

be strong reece my thoughts are with you

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

Get well soon Reece.

All the best to you all.

Best wishes to Reece and the family... my thoughts are with you.

Same here, good luck Reece.  :)up

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.

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.

great news!

A lovely picture, thanks Maureen.

Is Reece with you, or your Daughter, in that Pic?.....;)

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

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

keep it up reecey boy.,.,.,.,.,did you see the dinosaur with one eye.,.,.,.,he was a "doyouthinkysaurus".,.,.,.,
that was poor lol.,.,.,.,.,

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.

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

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

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....

awww sweet

"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.

 ;D

N1 and a boys love for dinosaurs is HUGE xx

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.

Nice pic. What an inspiration he is.

good to see the little fella up and about..

so glad he's feeling a bit better mo.,.,,,.

Nice pic.

Hope you all enjoy the dinosaur exhibition.

B&H

Been thinking of the wee Lad.  How's he getting on lately?

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.

He's a champ, so he is.

Trying to resize some more.

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.

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

yup that works  :)up

Who gets to pick up all the toys from the garden ??


Love the one in front of the lappy :D

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

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 

OK! magazine it is then Mo!

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

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.

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.

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!

Not before time. Result!

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?

That's absolutely BRILLIANT news!!! 

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.

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

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???

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.

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.

Will try it, and inject it through his gastrostomy as he does not like honey.

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  :-*

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

Have a great day out, look forward to the pictures. X

Change of plane Wheelgate park instead. Thanks Mel. x

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!

 ;applause; ;applause; ;applause; ;applause; ;applause; ;applause; ;applause; ;applause;

The hot weather would also massively affect health. Looking forward to seeing the pictures....

Left the camera in the med bag and dropped it off at Stacey's, so no piccys today.

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.

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.

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.

Very sorry to hear that....Hope he does better soon.

Mo can you pm me your address pls, I sent some more magazines but they've come back.

Now that is bad as I have paid for 6 months redirected mail. PM on way .x

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.

thoughts and best wishes to all of ya xx

Sigh, hope all gets better soon.

Will be thinking of him.  He's a strong wee Lad, so fingers crossed for a speedy return home.  xx

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.

Wishing all the best
love and kisses for the little fella xx

Good luck to the little fighter

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

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

Best wishes Maureen, fingers crossed. Pass on a huggle.

X

Best wishes to you all, thinking of you, especially this week.

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.
 

Crickey...best of luck to him.

All other words fail me, at the moment.

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.

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.

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 :)

Have a good rest today Maureen, & send my love tro Reece, please.

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

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?

We are getting there. x

Bloody hell Maureen. What a rollercoaster. He's so lucky to have you and Darren in his corner.

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.