We’ve just come back from Bristol, where we had Thomas’ formal 6-month post-op review. They are really happy with his progress, so it’s wonderful to get their confirmation of what we have achieved so far.
Without the spasticity, physio is less about working against that increased tone, and can now be so much more targeted. He is now walking small amounts without any support in physio, but not yet in everyday life. He’s getting there though. 6 months ago, we couldn’t allow ourselves to hope for that outcome, but now we can.
What other beneficial effects have we seen from the operation? Without the spasticity keeping his body (and mind) in an almost permanent state of tension, he is freer in so many ways. Less fearful of new experiences and places. He also has so much more confidence moving around, up & down off chairs, sofa, beds… He’s braver, more determined – he even says “let me do it” or “I won’t give up” when trying to do something difficult.
But where now? In this first 6 months, he’s been doing 5 hours of physio, plus horse riding and swimming every week, and stretches every morning.
From 6 to 12 months, he will spend more time at school, “only” 3 or 4 hours of physio (plus the horse riding and swimming too, occasional yoga with the rest of us, and hopefully time out on his trike now spring is here).
6 months ago, our goal was just to get through the operation safely. Our goal now – get him up on his feet regularly, more independent, and continuing to enjoy life and being 5, despite all the physio.
We must also say how amazing Dylan has been through all this. With all the attention Thomas has been getting, Dylan has put up with everything – having to stay longer in school when mummy comes to pick Thomas up for physio, at other times having to come along to physio and hospital appointments, and just hearing people always asking about Thomas and not him.
As for Thomas, he’s been utterly amazing. Despite the massive amount of effort he’s put in over these 6 months, we still have a very happy boy.
Thank you to everyone for helping us give Thomas the opportunities he now has. We couldn’t have done it without you.