On to better news… from not been able to balance simply standing Charlie has decided after 9 months of additional therapy graft he would take steps, balance, take steps again AND stay on his feet for 5 steps and then 8 steps- not just once but a whole 1hr physio session repeatedly. He has since repeated the feat- his exploits were videoed and Facebooked to the delight of his many followers! Go Charlie!
A big thank you for the efforts of Bill (ABM), Dan (PT Kids), Fiona (NHS physio), Sharon (Aquanauts), Emma (CEC, Hippotherapy) and everyone else.
It seems like a lifetime of therapy but it now appears to be paying dividends. Charlie has hated doing stretches, movements and exercises over the years but even he feels he is becoming more able and independent. The regular therapy with other professionals and all the hours of practice we have put in at times have seemed pointless and heartbreaking but each time we reach a bit of a plateau Charlie surprises us and pulls a new trick out of his bag.
My advice to anyone else in the same boat- keep going! The more you put in, the more you get out! Even small improvements can mean huge quality of life benefits in the future- by being more suple, stable and more balanced Charlie now dresses himself- with fierce independence. It takes him some time but it means he can choose what he wants, rather than decisions forced upon him.