Sunday, July 30, 2006
This weekend was a bumper birthday weekend with Ellie turning 7 on Saturday and William 2 today!! Wills was home from hospital - hooray! He has been home a good long time now, although the elusive trip to GOSH still looms over us but no date as yet. The girls came home with Grandma and Grandad and it was so lovely to see them and see all 3 playing together. Ellie was so upset when she had to go back again. I miss them so much too! Ellie had a lovely day on Saturday and enjoyed her birthday chilli! She loved her presents too, expecially her "Pixel Chix" a cross between polly pocket and a computer game!
William had a great day today and really enjoyed opening his presents and discovering what was inside. He played with everything, with the help of his sisters. His favourites were a Thomas that pops up plastic smoke balls - very amusing to all 3 children (and the adults), duplo diggers, Noahs ark and magic pens. All 3 children had a really exciting day and it was nice to cook Sunday lunch for a family again. William had a visit from his little friends Sophie and Athalia. Unfortunately, William had to make do with a telephone call from Daddy who is still in hospital following his accident.
Daddy did manage a bit more sitting up today though and we are beginning to think of the practicalities of him coming home at the end of this week or beginning of week after (depending on how quick he gets mobile with crutches). Tomorrow, I will order a foot rest and bathroom perch stool and a wheel chair to go out in (Wills will have to sit on Daddy's knee) I am also going to take scissors to some of his horrible draw string trousers to enable them to go over the cage. I was about to experiment this evening but was, apparently, about to cut into expensive ones rather than Paul's cheap and cheerfuls - oops! All in all, things are settling down. We are slowly getting used to William's impairments and things were greatly clarified at clinic on Friday. Wills still needs his surgery for a laparotomy and illeostomy. I am rather dissapointed about this as I thought we may have been able to save him the pain of this but they still need to make sure the Nissen did not cause any adhesions, apparently these are more common in children with underlying neurological conditions. It is highly unlikely he will now have a bowel transplant. He would also be unlikely to have a liver transplant if it started to fail on the TPN. However, so far so good with gret liver function tests and just a fatty swollen and grumpy liver! The main concern is that William will be on TPN for life and so will run out of sites for his Hickman lines. We have to guard his lines with our lives because repeated problems would significantly shorten his! Still, we are coming to terms with things and the fact more disabilities and impairments will probably emerge over time. It is watch and see but, as I always say, he is a happy child! We are also coming to terms with Paul's mechano leg for the next few months. Following a few argumentative days where we took our frustrations out on each otherwe are settling down into thinking practically and looking forward to him coming home, working out solutions to things such as his inability to drop his leg from lying to standing alone due to the weight of the cage and seeing the funny side of things. There are key things I will have to do for him, such as lifting his leg in and out of bed and on and off foot stools. Overall it won't be too much and he will become more independent as time goes on. In the meantime though, I might as well get a uniform with the pair of them!!
One thing that does upset me a bit about the coming year is that William will learn this year that he is different to other children and can't eat, is attached to tubes and drains and can't walk properly. I dread the day he starts asking questions... At least when Paul comes home we will be there for each other again and support each other through the ups and downs with William, even if it will be a while before he can physically care and play with him again - at least he will be able to read stories and sing songs etc...