Special needs equipment turns out to be like those proverbial buses. We have waited months and months for Boo to be assessed for the seating he so urgently needs and now he has been and hopefully, fingers crossed and if the wind blows in the right direction, the funding will be found and we will get a chair for home and nursery in about 6-8 weeks.
In the meantime, we saw Boo’s lovely physio this week and were presents with these funky things.
For the uninitiated, these are Piedro boots: orthopaedic footwear to help kids like Boo with foot stability, to help toe spreading (rather than the curling and toe pointing his high tone can produce), and encourage weight bearing. They hopefully will also help with sitting in the Breezi chair I got him and get us nearer than 90 degree angle we’re looking for.
They are also essential for this:
See what I mean about buses! This is a standing frame on loan to us from our physio until they put in a grant application to fund one (fingers on other hand crossed now) in the next few months.
Of course, no parent wants their child to have to use a standing frame. And we are still working, when we’re not focusing on our main goals (sitting and rolling from back to front), on getting him to stand by just using us for support. But the standing frame can do important work by encouraging weight-bearing in a posturally optimal way. This, in turn, we hope might help to prevent it mitigate the hip problems (displacement, for example) that trouble many children and adults with cerebral palsy.
I had mixed feelings about getting Boo strapped into his Dalek-mobile, as we now call it. But I knew the potential benefits. What I should have anticipated, knowing Boo, but didn’t, was how much he would love it as the cheeky glimpse of his smile in the photo will tell you.
From the minute he got into it and stood proud and tall he started giggling and shrieking. (So this is what the world looks like from this angle! Look, no hands, Mum.) And when he realised that the play tray was only attached by Velcro and concealed a bowl to put toys, dried pasta or messy play objects in, he looked as if all his Christmases had come at once.
OK this isn’t independent play, exactly, since he is dependent on the frame and boots for stability, but he could play without me holding him up. And he clearly got a huge kick (pun intended – being kicked by a baby Hulk in Piedro boots hurts, for the record) out of something that only ever happens when he’s on the baby gym he’s way too big for.
I wish I could post that Boo is standing freely – her may never do that – more than that I wish I could post that he is sitting. I desperately want him to sit. But this is a step in the right direction. A step towards a new perspective on life for Boo and for us. A step towards independence. And that feels pretty amazing.