Planning for the future

Another busy week, although the main reason why I haven't blogged for so long is that I have been totally knocked out by a nasy fluey cold. Since my last entry we have visited the school it it likely William will go to and begun the lengthy process of getting a "statement of educational needs" for him (getting him "statemented" in other words). We have also been to see the neurologist and seen our occupational therapist, who fitted William with the rather fetching support belt shown in the picture. William has found time to play as well. He has a fantastic Link worker who spends 6 hours a week with him so I can get on with doing some work. He loves to play with he books and lego and sticking and paining... with her while I get on.

The visit to St Giles was really good. It is a lovely school, full of happy faces and photos of disabled children achieving things in sports, outdoor pursuits, theatre and art, all sorts of things, on walls all over the school. It was lovely for William to see so many other chldren with wheelchairs (or "Charlie Chairs") and tubes just like his. This has got to be better than being the only child in a school. There is so much going on for the children there and they have a rule that if an activity is offered to them, it must be suitable for all the children or noone goes. The children have plenty of opportunity to reach their goals too and one girl we met is doing 8 GCSEs as well as learning to play the drums. The children get all their physio therapy, occupational therapy, hydro therapy, speech and language therapy, wheelchair, seating support, peidro boots and brace and splint assessment and fittings, medical reviews etc all at school so there is minimal disruption from lessons to attend hospital clinics. It was a really happy and positive school and we felt really lucky we are in the Borough that has such a school. Ofsted have rated it as a Beacon School of its type. As we are in the Borough, if William's statement says this is the right school for him he will automatically be accepted. We are hoping he will have a link into a mainstream school for an afternoon a week so he can also integrate. I would accompany with him for this to avoid the problems of needing a nurse on site. Of course, St Giles has an on site nurse who will be able to deal with everything involved in caring for his line and dealing with the TPN.

The day after visiting the school, we saw the neurologist who does joint clinics at our local hospital. This whole problem with the double referral is still going on and we have another neurology appointment at Chelsea and Westminster next month. The neurologist we saw agreed that William's walking and posture are a concern but has not had the benefit of seeing him over time to watch how it has deteriorated. She said it could be a syndrome or a degenerative condition but could also be a feature of his prematurity - although not one she saw as something he would grow out of, more a damage that was done as a result, like a form of cerebral palsey. She did suggest things could be helped to a degree with surgery. The first thing she wants to do is to get a better MRI brain scan under general anaesthetic and do a lumber puncture to look at the chemistry of his spinal fluid at the same time. She hopes all this will be done before Christmas. With the tests at Great Ormond Street next week, poor William is going to have an eventful end to the year. I also expect next year will see some more hospitalisations while we try things as a result of the tests. This will very likely involve some surgery as there are a lot of procedures that have been on the cards for sometime and awaiting the Great Ormond Street tests, such as the illeostomy and laparotomy and, of course, the small bowel transplant assessment at Birmingham that still hangs around as a big possibility. It is always confusing to see new doctors though as we seem to be moving in on a diagnosis but then someone else has new ideas. This doctor seemed more inclined to look on his problems as potentially a couple separate issues rather than look for some underpinning genetic condition. She did agree he has some interesting features like "sparse hair" and wants to know what the geneticist is thinking at the moment. I think things will be a lot clearer by the end of next year but I always find it disapointing when a new doctor doesn't immediately say "this is a clear example of X!"

Today, we were visited by William's occupational therapist. She fitted his lumber support but also wanted to talk about our house and the adaptations she feels are necessary over the next couple of years. It seems a bit premature to think about this but the grant applications take at least a year and she thinks it unreasonable for us to be carrying him up and down the stairs beyond the age of about 5. By the time we have thought about the solutions, been through the grant applications and completed the building he will be about that age so things have to be thought about so early. The OT thinks we need a wheelchair lift into what is currently the girl's room, in which case we would also need a loft conversion for them. We also need a walk in shower for William to use in a wheelchair if necessary. This is gutting as I love my bath and we don't have space for both. Another option would be to extend out at the back and build William a downstairs bedroom and bathroom and keep upstairs as it is. Of course, this is all very expensive and probably way beyond the grant. The last resort would be for me and Paul to get a sofa bed downstairs and put the girls in our room if William has to go in there. So much to think about, you just don't dream of all the implications when problems emerge in a child so young. The grants are generous though and we are so lucky these things exist. I must say, I am very pleasantly surprised at how much support there is out there for families in our situations. However, hospices still have no Government funding. This leads me onto my next fundraising venture for CHASE but this has been a long enough post already so that will follow another day...