Sunday, 13 October 2013

Autumn arrives again...... and nearly a year has gone by!

Daniel is quite fond of the phrase 'There's good news and there's bad news' and he always prefers to hear the bad news first, so I will adopt that model in this update.

The bad news is that Daniel has continued to be poorly, with one thing after another, for several weeks now. In fact, by my calculations, he has not yet managed a full week at school this term. This has been frustrating for everyone, with not only school time but also huge amounts of physio time missed. He has lost muscle tone and at times struggled even to sit up straight. Times like this remind us how hard Daniel has to work at all things physical, because as soon as he is unwell he just can't do it.

However, since I had a big moan in my last blog post, I shall avoid that here, and move straight on to the good news, or in other words, the high points of the last few weeks.

In mid-September, Sunday riding started again. Cotswold RDA is based at Cheltenham Racecourse, which is not only surrounded by lovely countryside, but also feels like a rather special place to ride......

Every Saturday morning, Rich and Daniel work through a long (often 2 hour) physio session together. Some of the recent sessions have been rather a write-off, due to Daniel being too tired, or too poorly. However, a couple of weeks ago, in a tremendous session, he showed us that he is still making progress, by achieving something he has been working towards for years (literally!) He climbed on to the physio bench independently! First he did it by his own method, and then astonished us by going on to do it the 'proper' way, going through a half high kneel position. If he can become confident at this it will allow him to climb up off the floor into a chair, or his wheelchair, so it is an immensely important functional skill. It's hard work, and since the next illness kicked in Daniel has only managed to reproduce it once or twice, but the fact that he has shown he can do it means that with practice he will eventually do it with confidence. Here's the video (with apologies for the self-indulgent Star Wars reference!)

So, we are now in mid-October, and Daniel is almost 11 months post op. Some of the families we met in St Louis are coming up to their 1 year post op point this week, and yesterday we met with Sophia and George to celebrate their first anniversary! It was lovely to catch up with the families, and let the children spend time together, as well as raising a toast to all they have achieved in the last year.

Daniel was on his feet for hours, and all the children had fun playing and dancing. In fact, between them they had some pretty groovy moves going....

It should never be underestimated how much of a boost Daniel receives to his self esteem from spending time with other children who have CP, have undergone SDR, and go through the same gruelling physio schedule as he does. Despite the fact that he has been ill all week, he was on great form and had a wonderful time.

From our perspective, seeing these three children dancing together, and remembering that a year ago none of them could walk, was a powerful reminder of just how far they have all come, and what special little people they are.

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