Sunday, 13 February 2011

Up and Down day - Day 22 - Friday 12th Feb

Today was very much a mixed day. The weekends are time off from PT, but while it gives Ev a chance to recover, it does leave the days to be filled (and it is the reason why we are here, after all). The start of the day was very exciting for Evan as we had planned to go the "The Galleria" which is the local mall. He had amassed the correct number of "Galleria points" (awarded for certain PT and homework tasks) to be able to buy Wipeout:The Game for his wii. So, we made a bee-line for Game-Stop and the purchase was made. (Just hope my specially chosen contact can help sort out the compatibility issues out....)

One happy child. Although there is only so much you can do in a shopping mall with a 6-year old in a wheelchair, and he was getting bored - especially as the game was burning a hole in his pocket. As we went for lunch (at the very highly recommended Cheesecake Factory) he dipped a little and started to talk about going home (that's home home, not just the hotel) so that he could play the game, but im sure it was a way of engaging his very evident home-sickness (and perhaps a little cabin-fever as well). He got a little upset, if truth be told. Which manifests itself in his wanting to "do nothing" and tells me off for everything I do - looking at him, not looking at him, etc - the absurdity of it usually makes him laugh pretty soon so I dont mind playing along.

So, we stood in the car-park, in the lovely St Louis spring (?) - best weather so far - waiting for the taxi. We got back to the hotel about 2pm which was 8pm back at home, so Loup was ready to Skype. It's really difficult as he doesnt always want to speak, which is difficult for everyone. Anyway, after a couple of hours we read his book again - all three of us (Ev, Loup and I) and he finished off the skype with a smile.

Since then, about 3 hours ago, he still hasnt been able to get to sleep. I know he is tired, exhausted even, but the effort spent on PT and recovery from the Ops is different to his usual day-to-day effort - and as a result he is struggling to sleep. Im also sure that he is going over things in his mind as well - so his insomnia is quite possibly as a result of that as well. You know what it's like when your mind is full of worries - why should that not be the case for a clever, thoughtful, 6 year old.

As I write this (8:30pm) he is still not asleep so I have promised to go to bed myself as he said that would help. At least, since I found a Wipeout re-run at 7pm he has picked up a little bit and was laughing and joking. I guess when you are a bit down you need your favourite stuff to lift you up.

Not sure what tomorrow will bring.... it's quite difficult, as I mentioned before ~ we arent on a holiday but we need to fill the time, which is difficult as Evan really isnt yet up to everything either. We will hopefully do some skyping in the morning - although it very much depends on how he feels and then perhaps visit the Planetarium. Think that will be good, and would tick a homework box as well...

Next week will pick up as we have a busy day (relatively) on Monday and then our special guests (one being a surprise!) arrive on Friday - so the last week will definitely be busy.

Well, i'm off to bed (8:47pm) - g'night!

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