It was the first day at the St louis Childrens hospital today. It is huge and made everything feel very real all of a sudden. We got to watch a video on SDR, it really is amazing how they do it and through such a small incision. We then met Joan Pugsli who is the SDR coordinator and runs all the physio I think! Got to ask her all the questions we had stacked up and she was really lovely and said Dom had a great range of movement . We then got to see Dr Park or ‘the Man’ as Dom calls him for some reason. Dominic was great with him and was very relaxed around him and did what he was asked to. Dr Park was our sort of person, no fluffiness just gave you the facts as he saw them which is the approach we like best. He did confirm that Dominic has Spastic quadraplegia rather than Spastic diplegia so all 4 limbs are affected but we kind of suspected that anyway. He also said that he was the 2nd worst case he has seen from the UK which a bit of a shock. I guess day to day you forget just how severe his gross motor problems are so was a bit of a reality check. But he was very positive and stood by that he is an excellent candidate and that he expects to see him taking a few steps with a walker before we leave, Kneeling, sitting well, improved function of both arms and easier personal care such as changing nappies. they are also going to try and get an OT appt while we are here to ask their advice on his right arm and possible splinting options. DP was very pleased with his range of movement and said that he had clearly been stretched frequently and well so thank you Ingfield and Robyn for all your hard work!!! This means that he will not need to have any heel cord surgery while we are out here which is great news! Dom is the first down on Thursday so will have his surgery at 0730 so about 1330 UK time. We will update as much as we can during that day on face book and here and text family to let you all know he is through it all ok. Just been having a drink downstairs with Paula and Debbie and gang and so interesting to see before and after with Ruby and Sophie and see what an amazing surgery this is. Can’t wait! Thank you for all your messages really helps knowing we have the support back home so keep them coming.
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