Wednesday, 23 July 2014

Summer holidays at last.....

Sorry for the long delay between posts. That has been due to the very long slog between half term and the end of the summer term. Daniel has been plodding along, working hard at his physio and his school work, and while there hasn't seemed to be much visible progress, in reality he is slowly but surely, little by little getting stronger.

His private physio set him a '2 week physio challenge', and then awarded him a trophy for that, combined with very hard work on his physio all year. He was thrilled with it!

The grand presentation!
We also had a great visit to Brainwave in June, where Daniel was able to show off all his progress since we were last there last August, and we came home with a new exercise programme, which we mix and match with his other programmes from other professionals. He also came away with a new certificate, for taking 4 independent steps. In fact, the Brainwave certificates are quite a nice way to summarise his progress since his SDR op. We have had.... January 2013 - certificate for walking with a Kaye walker, August 2013 - certificate for walking with quad sticks and June 2014 - certificate for four independent steps!

Since the Brainwave visit, all the professionals working with Daniel have agreed that any walking should be done in his newer taller splints, due to the better alignment they give, and hopefully the improvement to the tibial rotation in his right leg, and hyper-extension in his knees. We will sacrifice the building of the calf muscle for now, in order to have those gains.

A couple of weeks ago Daniel got his new wheelchair, which has been provided on the NHS (admittedly after a little bit of fuss on our part), and for which we are very grateful. It is a zippie Simba chair, which is far lighter than his previous chair, and much easier for him to self-propel. It still needs some tweaking, and possible additions like foot straps, but he is enjoying his increased independence in it (and we are enjoying the fact that it is so much lighter to push / lift).

So... Daniel made it to the end of term, and the end of Year 3 (and Lucy to the end of Year 1). It has been a good year for him. He has relished the move to Key Stage 2, and the more structured academic subjects. He has worked hard at his physio, and has made steady progress. At the same time, over the last six months in particular, Daniel has started to become more aware of his disability than ever before, and has been sad and / or frustrated at times. This is mainly not for reasons you might expect, ie it is not because he can't walk as such. It is more because he feels that he is nagged so much of the time, and because he can't take part in some particular activities, often small or transient ones.  Also because he feels the physio as such a burden (not surprisingly, because it is!) We had been warned that this self-awareness tends to develop around this age in children with physical disabilities. It is hard for us to see, but it is a necessary phase, if Daniel is to move not only towards acceptance of his difficulties, but also an understanding of, and pride in the strengths he has too.

Having broken up from school on Friday the children and I, along with my Mum, made the long journey over the weekend up to Perth, for another two weeks of hard work at MP Fitness (where you will remember we came this time last year, and again last October). Daniel will have two hours a day in the gym for the next two weeks. We had our first two sessions Monday and yesterday, working with Rachel and Steph, and it's been a great start. Lots of hard work on core and legs.....

Yesterday, Steph managed to get him walking with his crutches on his own for the first time. Admittedly it wasn't that pretty, and not massively stable either, but he did it, and now can build from there.

Immediately following that, she took the crutches away, and tried some independent walking, and Daniel SMASHED his previous record several times, on the final attempt actually managing FOURTEEN tiny steps! (Don't you love the way he grips his t-shirt, as if it is going to stop him falling over?)

So, although I said at the start of this post that there hasn't been much 'visible' progress over the last few weeks, while we have slogged away to get to the end of term, in fact today reminded me that the hard work does has an impact. Daniel has clearly been getting stronger and steadier little by little. He is ready for what Mike and team will throw at him over the next two weeks, and is keen to achieve whatever he can. That's not to say there won't be any tears though...............

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