Thursday, 30 June 2011

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...

Sunday, 12 June 2011

Back on track - Sunday 12th June

As you may know, Evan's Big Journey took a slight detour over the last couple of weeks. It would be over-indulgent to go into too much detail, but remiss to not mention it. Basically, I had an unscheduled stay in hospital due to a bout of sepsis and associated other problems, but things are slowly getting back to normal.

Therefore, almost as ever, it fell on Loup's slim but broad shoulders to look after the kids and the house, keep an eye on me, and still do the work which Ev needs. Inevitably, there had to be a slight reduction in some of the activity that we do on a daily basis (I find it amazing that Loup managed to do anything at all...) and, additionally, Ev's physio advised that an increasingly shattered looking Ev should have a week off during half-term.

Unlike the saying, a rest seems to have been as good as a change - and he has certainly improved as a result of some time off. I think his body just needed a little time to catch up. Plus, I think he has grown a little, which maybe needed time to settle in.

Anyway, rather than try and summarise the last couple of weeks (as if I would know where to begin....) it's probably easier to say where Evan is at the moment and then just chuck in a video at the end. He is beginning to walk independently and can now manage more than 50 steps unaided. Well, when we say "unaided" we mean without any of his walking-aids and without him holding onto us. However, he does feel quite nervous and needs us to be in close proximity - very close proximity (inches away !). Evan being Evan, he likes to have a target to beat each time. He has also now set himself the target of getting from the bathroom to the bedroom on his own. Which he has managed to negotiate a couple of times and when he does, the smile on his face is priceless.

Unfortunately, the extra freedom comes at a price and as we try to withdraw more, and as he tries to do more independently, he has taken a couple of tumbles. However, it doesn't deter him - nothing much does.

Hopefully, things will continue to return to normal so we can provide more updates and, with Ev's rate of progress, there will be even more good news to report.

And, without further a do - here is the promised video: