Robbie seems to have come to terms with using his chair at all times when in school, and has also now accepted he needs to use the disabled toilet whilst at school, seems his initial resentment to all these changes have subsided and he now accepts this without a fight. The fact there is a support teacher with Robbie throughout his full day also helps to relax our fears for him when he is at school. He still is reluctant to stay at school for dinners, but a Monday and a Wednesday are his regular days for staying for lunch, and he comes home for lunch the rest of the week. The 2.30pm school finishes seems to make Robbie happy also, he seems less tired when he gets home...
Still waiting on delivery of Robbie's new splint, but to be fair they did advise 3-4 weeks, so there is no issue there... hopefully the DBS may help us lose the splint all together... only time will tell.
The team at the Evelina got back in touch in relation to doing a further review with Robbie to repeat mobility base lines, and possibly upper limb functions. This is due to his recent decline in mobility and stability... this decline seems to have slowed now thank goodness but his mobility and stability are much worse than they were in July when he was originally assessed. So we are off down to the London on the 26th, with a morning appointment on the 27th Oct... then home again...
I also managed to complete my first ever 10k race in an attempt to raise some funds for the Dystonia society. I ran the BUPA great run in Edinburgh on the 2nd Oct, in an amazing time of 1hr 8m, not bad for a 46 year old smoker (The ciggies need to stop they are slowing me down!!!) Think it would probably be best to get Robbie's implant out of the way before I attempt that challenge though, I dare say that is going to be one of the longest days of our lives...
It was a really good feeling to achieve this after 46 years of life, it made me feel so proud inside, and you certainly get a sense of achievement, think running has become my new friend and I will definitely take part in future organised mass run events, the atmosphere was amazing, everybody helping each other on all the way... It was great : )
Robbie and co pictured below proudly displaying his race medal...
The run up to surgery is a real emotional rollercoaster, and your thoughts and feelings about the op change several times throughout the day, one thing we are convinced of though, we need to go ahead and give Robbie this chance... regardless of the outcome, he will always be our little lad, and we love him to bits, nobody or nothing can take that away from us... He brings happiness and sunshine into all our lives xxx
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