Mikaere has low tone (also know as hypotonia). He’s floppy. This isn’t anything to do with his muscles – he’s not weak. He has muscle strength and can kick and grasp and do all the things – the problem is not with his muscles. The problem is with his brain and the pathways that say hold this muscle tight. The signal doesn’t always go where it should, and as such his body doesn’t always hold itself up like it should.
In short, Mikaere has a hard time hold his posture straight and is at risk of scoliosis. Womp.
But knowing this is an issue we work with our physio to help hold it off as much as we can. Which is why we’ve tried all sorts of things, hipp helpers, a sleep system, bilateral foot support things.
Now we’re trying a DMO (dynamic movement orthotic) suit. It basically looks like a super hero suit.
It’s a suit custom fit just for Mikaere (not even kidding, the ortho lady measured every inch of him at least twice. It took a good twenty minutes to do).
The idea is that with a custom fit, increased pressure across the different muscle groups can improve proprioception (which is the sense of you knowing where your body parts in relation to the rest of you, and the strength/effort involved in moving all those parts) and lead to a better awareness of your body. Hopefully we’ll see better posture, more stability and more intentional movements. Fingers crossed.
He’ll need to wear it all day every day, but if it means we’re avoiding (or if not avoiding, reducing the severity of) scoliosis, then we’re all in.
Originally we thought we were going to have to pay for the suit privately. Our borough doesn’t support the use of DMOs. We accepted this, and had the initial appointment (at a cost of £130) and were saving away quietly for the other £1985 that it was going to cost. We were lucky, we had a charity donate £400 towards the cost of it.
But, even better for us, is that we got referred to orthotics at our specialist hospital (rather than our local hospital) and they’re going to cover the cost! Woohoo! It means we can get the £400 returned to the charity so it can do some more good for someone else *and* our savings can go towards another therapy for Mikaere. Happy days!!
So Mikaere’s getting his first super hero suit. It’s going to be amazing.
