Thursday - 1 week post op - Happy Thanksgiving!!

Today it is the Thanksgiving national holiday in the US. This has been slightly odd for us, because of course we are not used to celebrating Thanksgiving (in fact Mum had to buy the children a book to explain what Thanksgiving was all about, since none of us knew). The main impact for us was that there was no outpatient therapy today, so we went down to the huge St Louis Thanksgiving parade (one of only four held across the USA). It was great fun, and very American!

Daniel loved all the little cars, and the huge inflatables, but I think Lucy was most taken by the people who walked along throwing sweets to the children!

 

Grandpa also decided to join in with the cheerleaders at one point, with no embarrassment! (Well, he was not embarrassed, at least!)

The parade was all done and dusted by 11am (having started at 8.45) so the Americans could go home and get their turkeys in the oven. We, however, just retired to the hotel for a coffee and a rest for Dan. Then, after some lunch, we went down for another hour at the Zoo (big advantage of it being free, that we can pop along for just a short time if we wish). We went principally to force Dan into his wheelchair for another chunk of time. He did well at the zoo, but did then cry all the way home in the carseat that his back was hurting a lot.

Once back, and after another rest on the floor, we finally tackled his 'post-discharge exercise program'. This is meant to take about an hour each day, on top of the physio at the hospital. We should have started doing it as soon as we were discharged on Tuesday, but Daniel has been in too much pain when laid on his back to do so. However, we did get down to it today, and will do it every day from now on.

Daniel tried hard, although it is tough to see the fact that he has no strength at all in some muscle groups, because in 6 years they have never been used. Spasticity groups muscles together, so it is only now the spasticity has been removed that we can see muscles working separately, and the fact that some of them currently don't work at all. There is so much strength-building that needs to be done. For instance, the reason why he can't currently roll over from one side to the other side (something he could do pre-op) is because with the spasticity removed he has no strength at all in his abductors (outer thigh muscles) so he can roll his torso over, but his legs don't follow because he doesn't have enough muscle power to drag them over. (If you imagine what you would do to roll over yourself, this will make sense). He is quite frustrated by this. I think it is also part of what is making our nights so awful (the fact that he can't roll over in bed when he gets uncomfortable, so wakes up). At the moment we go around in the day time with that feeling you have when you have a new baby, where you are constantly so sleep deprived that you sometimes feel light - headed.

So, tomorrow everything here gets back to normal after the public holiday, and we will be back at the hospital for physio in the morning. It is also our last day with Mum and Dad here before they fly back on Saturday, so we want to make the most of it.