Monday - post op day 18

The climate here is so entirely different to at home. It seems to be almost always blue skies, and has only rained once or twice since we arrived. Sometimes it is very cold, but the next day can be nearly twenty degrees higher - really weird, but I do prefer it to grey skies and rain all the time. The last couple of days have been really warm, 75 degrees today - in December! There was quite a breeze but it was essentially hot weather and we were all out in t-shirts.

Daniel had a reasonable therapy session first thing this morning, including some supported walking in his walker - again he managed another tiny improvement. He is having some difficulty stepping with his left leg, which everyone is a bit baffled by, because when he tries to step it just seems to go up and down again on the same spot, unlike the right, which actually steps forward. We will continue to work on that.

After therapy he came back to the apartment for a rest, then the home exercises.  Then it was time for lunch and straight out to the hospital again for our appointment with Dr Dobbs, the orthopaedic surgeon. He confirmed that Daniel does need to have his hamstrings lengthened tomorrow. We were expecting this result, much as we were clinging to the hope that he might not have to have it.

Most of the children of Daniel's age or older who have SDR need to have it followed by orthopaedic surgery. This is because six years of spasticity in Daniel's legs have caused the hamstring muscles to shorten permanently, called 'contractures'. This means that even with the spasticity removed, he is still unable to stand up straight because his his hamstrings are too short. Dr Dobbs said that Daniel has 'moderate to severe' contractures in his hamstrings, so they definitely need to be lengthened to allow him to maximise the benefits of the SDR. On the up-side, his heel cords are OK and don't need to be done (many children need to have both done at the same time). Compared to the last op, it is relatively straightforward surgery, with a maximum one night stay in the hospital (and even a chance he may be allowed back to the hotel tomorrow evening). Nevertheless it is more surgery, another general anaesthetic, and of course more pain (and Daniel is rather more aware of that likelihood this time, having experienced it so recently). I continue to be amazed by how brave he is, and how accepting of what needs to be done to give him the best chance, with never a complaint or a mention of "It's not fair".

So, we have to be back on the 6th Floor for 9.45am tomorrow (Tuesday), with surgery likely to be around 11am St Louis time (5pm UK time). As before, if anyone can spare him a thought or a prayer around then we would be extremely grateful.

Tonight we have once again had the 'night before surgery' thorough bath and hairwash, because after tomorrow he will again not be allowed to have a bath for 10 days; in fact we suddenly realised that probably means the next bath he will have will be back in the UK!! Now that was a happy thought..............