Friday, 14 December 2012

Thursday.....our last night in St Louis

So, here we are - the end of our adventure in St Louis, although we hope it is just the beginning of a whole new journey for Daniel, and for us all. As I sit on the sofa in our apartment, with the chaos of packing all around me, I am not sure what to write to best summarise our time here. It would certainly be fair to say that some of the worst and best moments of my life have happened in the last five weeks. We have made some wonderful friends, who had made the same huge decision as we had, to bring their child here, to give them what they believed was the best chance. We have been humbled by the courage and determination shown by all these children, including Daniel himself, and we have experienced the joy of seeing him progress so much already. We owe a huge debt of gratitude to both Dr Park and Dr Dobbs, as well as the fantastic physios Jackie and Mike. All these people have given Daniel the start, now it is up to us, and to Daniel himself to ensure that we make the most of the opportunity and he fulfils his new potential. I must admit that thought is a bit scary, because while we have been here, we have been in a bubble, where we have been able to focus on the physio, and then fit other activities around it. Once home we have to find time to fit all that physio (and there will need to be a LOT of it) in around school, homework, normal home-life, and Lucy's activities, which the poor child has missed out on in the last five weeks. That said though, we are of course excited to be returning home, to our own home, friends, family and school (and normal food!)

We will also be forever grateful to the hundreds of people who made donations, ran half-marathons, bid in our auction, climbed Leckhampton Hill, wore 'funny feet' to school, sponsored somebody else, bought cups of coffee, baked cakes ........ the list goes on and on.  So many shared in the fundraising to give Daniel this chance, and we have been overwhelmed by the number of people who have also supported Daniel, and followed his story while we have been here. I hope that those who contributed in the fundraising in so many different ways might feel they have a reasonable understanding of how the bulk of that money has been used and the whole new path that lies ahead for Daniel. 

But.....I'm finding myself a bit emotional writing this, so I will get down to the factual stuff about what we have done with our last day. We had a slow start, since we didn't have therapy until 11am. It was our last session with Jackie, and we also had chance to say goodbye to Mike. There wasn't much hard work for Daniel, because it was our last session, so there was quite a bit of paperwork to go through, plus Jackie did the tests to measure the spasticity in Daniel's legs (this had also been measured at our pre-op assessment the day before the operation, for comparison). The big news was that Daniel now has ZERO spasticity in his legs, that's no abnormal muscle tightness at all! Look at all the noughts on this sheet!

You can see in this video clip that Daniel is just relaxed and checking his arms while Jackie is testing his legs quite vigorously!

She could also achieve a stretch in his hamstrings and heelcords which was more than ten degrees better than before surgery, and that is with him still being sore at the moment, and therefore without us being able to stretch him properly every day. Once he is fully recovered from the two surgeries and we can stretch him more firmly then we will expect an even better stretch.

Lucy also had her last session in the siblings' playroom; she made some antlers(!) and was thrilled that they gave her a special book of photos as memories of her time there. She will be taking it into school on Monday!

We should have come back to the hotel after therapy to pack, but being in denial about that, we decided to squeeze in a last zoo visit! It has been such a brilliant place, and at this time of year has been virtually empty. We picked a few old favourites to see, and also made it into the reptile house this time, to see the snakes and a Komodo Dragon, which Rich was particularly excited about!

So, this will be the last post for a few days. Tomorrow morning we will leave the hotel after breakfast, and set off on our long journey, just as Daniel and Lucy's friends at home will be finishing school for the weekend. Therefore I aim to update again in a few days once we are home and settled. Thank you again to everyone that has played a part in our adventure!

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