Saturday, June 09, 2007


I am so sorry it has been such a long time since I last blogged (thanks to Charlie for texting me today to give me a kick up the backside!)

All is well. We have just been so so busy. William has been well over the last few weeks. There are some problems (as usual!), mainly with the amount of pain he is in due to the compression and fluid build up he has in his intestines at the moment. We are trying suppositries and medication at the moment but there will be further discussions in a couple of weeks as to whether or not he should have the illeostomy. William's consultants are waiting for some advice from the Birmingham team on this one.

Meanwhile, William's hair has gone for analysis to see if he has a very rare (so rare there really is literally only a handful of known cases worldwide) genetic condition called "trico-hepatic-enteric syndrome". William's case for statement for special educational needs is heard next week so there have been loads of appointments over the last few weeks so everyone can update their reports. As William is currently well, we have been able to judge his progress, as sometimes it is hard to tell if deterioration and symptoms are just due to him being so unwell. Cognitively, William is doing really well and developing every day. His physical development is not going so well. He had a detailed seating assessment this week with his wheelchair assessor and occupational therapist. His muscle tone and reflexes have deteriorated throughout his body but particularly in his pelvis and trunk. This really is William's problem area (of course his bladder that he seems to lack control of, stomach and intestines are in this area too). He presents a huge problem as he can function well, he is a fiesty, determined and independent little soul but he really can't sit very well without a lot of support. His spine is now bending in a curve and to one side and, if this is not supported, it will soon fuse. So, after much discussion, it was decided that William should have a powered wheelchair to use when he is on his TPN (which is probably going to have to increase to 20 hours a day) and when he gets too tired and wobbly to walk with his walker. This way, he can have independence and be fully supported while doing so. He is not a usual case (when is he ever!) so we just need to find out if Croydon will fund this. If not, we will be helped to acquire the chair from one of the charities that exist to purchase these chairs for children. A 3 year old driving a powered vehicle is an amusing thought. I hope they can go very very slowly!! We were at a park today and his walker was very much envied by many of the children so I'm sure his "magic charlie chair" will be even more so!

We had a lovely day today, having a picnic with fellow "Fetchies" from the running website I am a member of. It was so lovely to meet people that I chat to online so frequently. I am really looking forward to catching up with others of you again at the Hydro Active in September, although I hope I get the chance to see people before then too! William has been home for a good few weeks now and it is great to think about making plans. Of course, the bubble could burst at any moment, especially as we are about to do some tests to look at his fluid balance and blood sugar levels at home in the next week or so, and there is the whole illeostomy issue.

Hope and Ellie are great too. At the moment, they are resting in bed before coming down to watch the final sing off in "Any Dream Will Do" and, hopefully, watch Lee become Joseph. There is much excitement among the Milne girls about him and Ellie even sent him a lovely good luck card! Hope is preparing for her own show at the moment. She is the narrator in their Year 6 show, "The Rocky Monster Show" She has a lot to do so is very excited about it.

Well, I hope that has updated everyone a bit. I am sorry it has not all been in more detail as things have been happening. I will post more frequently! The main thing has been trying to catch up with work while William is well and my mind is not so preoccupied with him. I have loads of pictures to share with you too and will download and upload them for you tomorrow so do come and have a look.

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