Reece goes away for Christmas. Again.

[TightEnd]

Great stuff Maureen, continued best wishes to you all

[DUNK619]

best wishes as always xxxxx

[ChipRich]

best wishes as always xxxxx

xx

[The_nun]

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.

[Dewi_cool]

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

[pokerram]

all the best

[charmaine]

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

[Laxie]

Thinking of you all  xx

[tikay]

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

[madasahatstand]

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

[Tonji]

All the best to you all Maureen.

[pokerram]

give reece all our love thinking of u all

[The_nun]

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

[Laxie]

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 

[RED-DOG]

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.