New adjustments

Yesterday was a significant day in my journey with William. We spent most of the day sorting out the numerous bags of stuff that accumulated in the hospital. It was a very hazy day for me due to the lack of sleep associated with all the IV drugs, as well as our usual routine of nappy changes and aspirating William's gastric tube. Depsite the fact he is still very tired and under the weather, I decided to take William to the park as he had not had any fresh air for a week. Because of his neutropenia, he is not allowed to mix with other children at the moment. However, we were told that a trip to the park is OK as long as he doesn't get too close. As usual, William enjoyed the swings and toddling around watching the other children. His "William walk" was pretty pronounced, probably due to his tiredness and the fact he had been confined to a cot on 24 hour IV fluids most of the week. For the first time ever, another Mum commented on his "disability". I didn't mind the questions, we have been used to that since the day he left the hospital attached to an oxygen cylinder. This, however, is the first time somone has commented on his physical "impairments" rather than the health related stuff. I watched him walk away and could see that it has become very obvious, especially when he is tired.

The physiotherapist came round today with some Piedro boots to tide him over until we get our appointment for his special insole and own boots to be fitted. She had a few pairs that other children had finished with that hardly looked worn. We found a pair that fitted him (unfortunately, not the really cool blue ones she had!). They do look pretty funky - like "Kickers" or "Timberlands". They will look interesting with shorts though - like he is off for a hike! She had another look at him and his posture isn't perfect. His feet have deteriorated as they are not growing properly with him and are becoming more and more "deformed" as a result. We discussed the potential for using splints and braces etc. For now, we will try the boots and a more specialist chair, perhaps with a harness to keep his back straight. He will need to be referred to an orthopedic team to keep an eye on things. At the moment, there is little scope for surgical intervention but who knows what the future can bring. We will keep an eye on how his walking develops. At the moment, the physio is happy for him to stagger and fall as he has learned to just get up and carry on. It may well be that we have to use a walker later on if he becomes more unsteady. There are no exercises we can do to help at the moment. The things we can do are, luckily, fun stuff like soft play and swimming. William will begin hydrotherapy with the physios in September.

We have come to terms with William's medical issues. Now, we need to come to terms with physical disability and a degree of cognitive impairment. We have been slowly realising this but it really is time to get our heads around the impact this could have for all of us. Through all this though, William is William. A lovely, happy little boy with so much going for him. The hard thing is that we don't know how these things will develop. William is a complicates and unique child (in so many ways!) and there are no clear predictions that can be made. This is very hard for me as I like to know what is ahead. He is having a brain MRI scan in a few weeks time to see if there are any obvious structural problems. The neurological condition the doctors think he has will not be seen in this but we need to make sure there is nothing else going on.

Meanwhile, home IV antibiotics are going well, although very tiring as they only allow 4 1/2 hours sleep between the end of the midnight infusion and preparing the next lot. Our excellent and very sensible community nurse pointed out to me in no uncertain terms today that 10 days of that on my own is totally unrealistic. No no, it's fine, I protested, until I realised that she wanted to arrange help and support not take him back in hospital. The great news is we have respite for night tomorrow, Wednesday and Thursday so I can have a break and some sleep (hooray!). They are also coming in to do the 12.00 lunch time ones so I can have a break.

The other good news is that Paul is coming home "in the next couple of days!". Suddenly, they seem to think he is ready (and they need his bed!).