Different view - June 30th

Given my absence from work at the moment, but while still having the opportunity to get out and about as much as I can - which includes helping out with the school runs - I have been able to see more of Evan in his "real habitat", and it has been really enlightening. As a working parent, it is easy, if indeed essential, to get up, get ready, get delivered, get to work - followed by get home, get fed, get bathed, get to bed (then, relax....). So sometimes, you don't get chance to consider what goes on in the periods that you aren't there.

Not only has he had us pulling and stretching him before he even gets ready for school, and then again afterwards, as well as PT more days than not - his day is so full of energy-sapping work. "Work" in the sense of the extra effort that goes into getting into and around school. Up and down the steps with both school friends and staff, as well as in and out of classrooms with his frame. On a couple of occasions, when I have gone into school with him - and not having had to dash off - he has needed the toilet, so I have taken him. It's only a few yards, through a couple of doors and through the hall to the disabled toilet. However, you get an idea of the amount of effort needed to manoeuvre his frame over even just a small distance. No wonder his upper body strength is so good.

From a distance, through the school gates for instance, he looks so small - especially with the shoes which are two sizes too big (to accommodate his splints), but the one thing that you notice other than that is that he always has company. I suppose you could excuse the other children to be off doing something else more interesting, playing tig, climbing something, or just - as it would seem, and as I can vaguely remember - running from nowhere to somewhere else. As fast you can. That isn't the case though - he always seems to have company - and although he has some best-friends - there are always new ones around as well. Children I haven't seen before, but who are obviously keen to spend time with him. He seems so happy, and it's really good to be able to see that - sometimes, with all of the other things to consider, it's easy to forget that this is probably the most important thing which he needs.

In terms of recent progress, it's slow but very continued and steady progress. We will do our best to get some more video of independent steps but he seems to get very camera aware and gets giddy, losing control, so we haven't got any recently.

However, we are really pleased that his PT thinks he can move from his current splints (which themselves are small in comparison to the "paraphernalia" that he was wearing back in January) to his "polly-wogs" - which are basically no bigger than insoles. This means that he can hopefully get some more appropriately sized shoes (which may, or may not, flash - like his "Sketchers") but might also mean that he loses a little confidence while he builds up - but this is progress, even if it might not feel like it for a little while.

So, not too much to report in terms of "things that have happened", but lots of progress...