Another lovely day in St Louis.
In the same way that ice-rain was a surprise, so are the slightly humid spring days that we are now experiencing. Two weeks ago, everyone was wearing massive winter coats, scarves, hats and having to scrape literally inches of ice from their windscreens. This week, by comparison, people are out jogging and I havent needed my coat for best part of two weeks....
As mentioned in the last couple of blogs we are winding down to the last few hours, even minutes of PT and the team are still really impressed with Ev's progress. We are so keen to try and squeeze every drop out of these last few days but it's a balancing act as we dont want to exhaust him, and it's now feeling like the end of a long trip. Today, he tried to do some work on the bounceboard - which is basically a trampoline, set at an angle, which you throw a ball onto and it returns it. Before he can do this, Ev has to stand tall (supported). This is really tough work for him and he did struggle a little.
Next up was the biodex machine. This measures the strength of Ev's legs by applying force while he is sat down and he has to fight against that.
He has been measured at various stages and, notwithstanding the impact of the second op, he has moved from 59 / 72 (left leg / right leg) to 71 / 71. Which is really impressive as it is tangible proof that he is building up.
Finally, he did some basketball hoops, which were revisiting the standing up from earlier.
Once we got back to the hotel, and had had some lunch, I managed to talk Ev into doing some extra work. Anyone who knew Evan before the op will know that he is full of energy, even if his body couldnt always catch up - but he definitely seems more tired, generally. Obviously, part of this is the impact of the ops and the PT but he isnt able to get about as much, so there could be a bit of lethargy building up.
Anyway, we did the circuit which we had designed previously. We walked from our room to the lift, went down to the lobby and did a couple of laps, then back into the lift, and back into the room. [The hotel staff are obviously used to seeing the hotel lobby being used as a training track and he was greeted with calls of "good work, buddy", kind words and smiles from everyone we passed.]. He walked well over 500 steps. In many respects, he is sort of back to where he was before the op. In fact, he could probably do much more, much quicker, but with much less quality. He is now placing his feet down strongly, firmly and flatly. So much improvement - which gives him a massive platform from which to launch himself from. Perhaps even literally....
All that said, it wasnt plain sailing and we (well, HE) had a few things to cope with. The following makes his progress even more remarkable. Firstly, one of his front, top teeth is coming out and has been really lose for the last couple of days. It seems to be really sore and every time he tries to eat or drink he winces. Secondly, kids with CP tend to suffer from constipation and Ev is at the moment. 'nuff said.....
Unfortunately, things caught up with him and he didnt want to stick around at tea with Jack, Holly and Lucy. It was a shame but, in the circumstances, i'll let him have a rare moment of grumpiness. I'd also like to think that he really wanted to get back to bed as we were on the last three chapters of Charlie and the Chocloate Factory. (Now finished).
We still werent finished there as we got the night-splints today. These are similar to the braces which we have for during the day and they continue to stretch out his hamstrings and heel cords. So, I put them on, strapped in his feet and left him to settle down. Long story, short... (well, 30 minutes) I gave in. He was so clearly uncomfortable with all three things going on that I just couldnt do it. Hopefully, a delay of one day wont have a massive impact, and I probably should have been tougher, but he has worked so hard....When I took them off he said, "thank you, Daddy - thank you so much, I feel better now". He certainly knows how to charm, and he was indeed sleeping in about 5 minutes.
Finally, our special guests are safely in the USA and we will see them in less than 48 hours. Cant wait to see his face when they arrive....
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