Wednesday, 15 May 2013

Six months ago today.......

It's a very funny thought - one year ago today we launched Daniel's fundraising website and we were right at the start of our journey. Exactly six months ago Daniel was in the operating theatre having his SDR op. This morning I watched him walk from the car, all the way round the side of the school, into the playground, say "Hi" to his friends, and join his class line, before walking into school. Just amazing really.

Here's a bit of video from last week. It's Daniel coming down the corridor to meet me at the end of the school day. He was singing away to himself because he had just had "such an awesome day". I have no idea where he picked up such Americanisms.................

Monday, 6 May 2013

Two steps forward, one step backwards.......

We knew that the rehabilitation and progress after SDR was very much inch by inch; tiny gains and little bits of progress, which when you look back every few months add up to quite noticeable changes. However, this requires the commitment to the intensive physio routine. After a very successful phase of physio during the Easter holiday we have been rather thwarted in the last month, because Daniel has had two separate bouts of illness, each resulting in around a week of lost physio time, as well as yet more missed school.

However, much as that was frustrating, progress has certainly not stalled altogether and Daniel continues to inch forwards.

Here are a couple of clips showing new skills. The first one is Daniel managing to rise up on his toes. He is standing in the parallel bars so able to use his hands on the bars to help push, but this is the first time he has been able to do it, and a sign his calf muscles are getting stronger. The clip also illustrates why he wears splints with shoes to keep his feet in good alignment, since he pronates quite badly (ankle rolls in) particularly on his right foot. That's a very common CP thing.

This second clip shows Daniel's first real attempt at walking on his knees. He's not quite there yet, but it's coming along. Please try not to look at the messy room behind him. I would like to claim it isn't normally like that, but that wouldn't be the truth........

Before he became ill, as well as the walking he had been doing inside school, Daniel had started walking round every morning from where we park the car to the playground at the back of school. It's a surprisingly long and challenging walk for him with several bends, small slopes up then down etc, and as you would expect, there are children and parents all around, which makes him a bit nervous. However, he thoroughly enjoys being able to stand in his class line with his friends.

He is now out of his tall splints and wearing just his small splints almost full time, although he has not yet walked for more than about 20 minutes at a time in them, and there are signs they may be rubbing a little. We need to keep an eye on that.

Since I spend so much time on here talking about how hard Daniel has to work at his physio etc, I thought I would add one photo of his leisure time. Daniel does not read much for pleasure because his scanning difficulties, as well as the physical challenge of sitting up, holding a book etc, make it extremely tiring for him. He also struggles with full pages of unbroken text, although he is quite capable of reading the same text if it is broken up. However, he has recently discovered old-fashioned Star Wars comics, which can be bought weekly from the little comic shop in town, and he likes to sit propped up in our bed at the weekends to read one.

We are coming up to six months after Daniel's surgery, and will soon start making the video to send to St Louis for them to assess his progress at this point. We hope they will be pleased with what they see!