Wednesday, December 19, 2007

The latest update on Isla

We saw Michael for the first time in almost 6 months yesterday. He's very pleased with Isla's progress. She can now stand up on her own (without holding on to anything) and is walking well and not falling over as much.

Michael agreed with Ian and I, in that Isla walks with more control when she doesn't have her orthotics on, but it's coming at a price. The bottom of her feet are collapsing on the side, and Dr L is concerned that when she's older the bones may fuse together and she'll require surgery. I'll have to take a photo of her feet to better explain...

They're concerned about her legs, she's always had higher tone in her right leg (and it is marginally shorter than the left) but, and here's the curveball, she leads with her right which means it's her dominant leg...she should be leading with her left as it's the less effected leg, but it's weaker.

The plan is this, 1st of May, Isla is on the list to go to the Sydney Children's Hospital for the Botox injections. In the meantime, they're going to lock the hinge on the AFO's so that she can't lean forward as much with them on. She has a tendency to crouch when she walks (only slightly, I'd not really noticed until it was pointed out to me yesterday by Michael) so locking the hinge will make her stand up straighter. We need to do some strengthening exercises for her hamstrings, as the concern is that she won't be able to walk after having the botox (it will weaken her muscles initially) so we need to have her ready for that.

They give them laughing gas, but the mask needs to be held on the entire time and both Michael and I aren't too sure she'd cope very well with that. Dr L suggested pethadine as it's injected and can also knock little ones out, so there's another possibility, but it's a bit much to have to think of right now, and I honestly don't know how she'll react to it all.

When she walks with the AFO's on there's a lot of swivelling in her trunk, which is essentially because her left hand side isn't really working as well as it should, and she has to twist her trunk to swing her left side around. Again, she shouldn't be doing this as the left side is meant to be the stronger side.

We're going to increase physio appointments to every 2ish weeks to try and fix these issues. Poor little mite.