Saturday, October 14, 2006
A very busy week (again!)
Well, this has been another crazy week. I spent last Saturday hunting down ways of keeping William warm and dry in his wheelchair. We had a hooded buggy cover from when he was small. As you can see in the picture, he is not overly impressed with being covered up by this but it is a very useful thing to keep to hand for a sudden downpour! Much better is a all-in-one waterproof suit with wellies. The chair will get wet but a very useful addition to the bag is the type of towel you use for hiking and triathlon - small, absorbent and light both when wet and dry. We managed to find some very thick fleecy trousers that we will use kind of as a "coat for legs" as he would cook indoors in them. The Disney shop had a sale on fleecey blankets so we got a very cool "Cars" one in electric blue with a red trim - very colour co-ordinated with "Charlie Chair". So, William is all set for any weather. The next thing we found was that any bag I carry in my hand or on my shoulder comes in very close contact with the wheels. A rucksack is the way forward and, luckily, Millets have some really funky ones, for children as well as adults so I kitted out myself and Hope and Ellie as well, as a softner to the fact they will have to carry their own things while out now as we have done with buggy baskets etc.
Having got so well kitted out we have been out and about a lot, mainly this week to hospital appointments, but we have also found time to get to the park and feed the ducks on Hope's sailing lake. Feeding the ducks is something his Charlie Chair enables him to do and he couldn't have done in the buggy because he was not strong enough to sit up straight in it. As you can see from the pictures, he can still run around and play on swings and all the things a toddler loves to do. He is just doing these things in an ever more wobbly way and falls over a lot. He also gets very tired. The chair is there to give him another option when he is a bit too wobbly, as well as giving him some independence when stuck connected to a 4kg rucksack of TPN!
We are just about getting used to being out and about with the chair. At first I felt very self-conscious, something not helped by the highly unsubtle sirens that sound as the bus drive lets down the ramp. These feelings are also not helped by the reactions of some people. Most are great and very helpful, but there are many others who will ask questions. This can be fine but the worst are those who pass comment such as "poor little sod", "well these days they can fix anything" or "but he is a lovely" - he is a very happy little boy, certainly not a 'poor little sod', 'they' can't fix anything and why shouldn't he be lovely! Another thing I hate is people stopping their conversation to talk about William, in voices perfectly loud enough for me to hear. This is something many of out friends at the hospice are going through at the moment as the children move from buggies to wheelchairs.
This week saw three hospital appointments. The result of two of them was to be referred to another two consultants, bringing William't total number to 8! He will be referred to an audiologist to check his hearing and to a neurologist. As I have mentioned, William is getting more wobbly when walking and waddles a lot. He also finds it increasingly difficult to sit up straight when unsupported. He also has some uncontrollable spasms when he is very happy. This is really cute, one of the pictures shows one of these little moments. He had a brain MRI scan recently and the good news is it looked OK overall. He was not still enough to see the fine detail. However, there does seem to be an element of deterioration in aspects of his physical development, particularly where his pelvis is concerned. His feet are still growing in a curve. This has led his local team to think that his condition could be a degenerative neuro-muscular condition, like muscular dystrophy. For now, we watch and wait and see how things go. He has all the right services in place and there is nothing more that could be done. It is clear that his final diagnosis is going to take some time yet. He is still very young and you often need to see longer periods of development to diagnose these kind of conditions. If things deteriorate any more over the next 6 months or so, he will have nerve biopsies to see if there is any evidence of degeneration. It is very hard having to wait for answers like this but we can fully understand that so many conditions can seem very similar in a child so young and the differences often come in disease progression. You have to give it time to progress to diagnose the problem. Another finding from clinics this week is that it appears William has shrunk two centimetres over the last couple of months, taking him completely off the centiles. This could be due to problems measuring a small wriggly child but could well be due to his posture. It will be interesing to see if he "shoots up" when he gets his pelvic support in a few weeks!
As for the rest of us, Paul continues to heal very slowly getting ever more frustrated with being stuck in the house. I don't think my recent running hobby hels that ;-). I went into the running shop for some shorts for a 10K run next week. This will be the first time I officially run for my club so have to be in kit - how strange for a girl who has always hated any sport that involved running! I often take William into the shop when picking up bits and pieces and, today, they said that they would like to support me in the fundraising runs I do for the hospice. That is really exciting. I am learning that when I have sufficient adrenaline I can keep going. When this is not the case my asthma kicks in and I just can't do it. I would love to do the London Marathon for Chase - would the adrenaline of the day keep me going (of course, walking a fair bit of it!)? The girls are very happy at the moment. They are off to a sibling support day with Chase tomorrow. William is very tired and hasn't slept in the day for a few days so it looks highly likely Paul and I will get a very rare couple of child free hours tommorrow afternoon!