Thursday, August 2, 2012

Scoliosis and other stuff

Wow, it's been a full month since my last post! It's been a great and busy month. We had two weeks in Australia which was fantastic, then since we've been back I've been trying to catch up on uni work (I'm still behind!), we've had a bunch of appointments for Maddy, and we've been trying to enjoy summer as well. Also, we have a very special 2nd birthday coming up in two days! 

We've had a bit of a hard time finding shoes to work with Maddy's new insole orthotic - her feet are so small and wide. We have a pair that are ok but are really a size too big for her. We tried to find a smaller size, but they don't sell them in a solid rubber sole here in HK - so the pair that did fit her well didn't support her feet as well as they needed to. I've ordered some from the US that should work, fingers crossed! It's always a risk when you can't try them on before buying them.

In other news, Maddy had her orthopedic appointment yesterday. She sees two teams of orthopedic doctors - the spinal team and the pediatric team. The spinal team follows up on her spine issues (obviously) and the pediatric team follows up on everything else. The appointment yesterday didn't go as well as I'd hoped. 

First of all, Maddy's scoliosis is progressing. I'd suspected as much since I'd noticed a bit of a hump in her upper back. It is currently at a 32 degree angle. It's too early for surgery now, but we will keep an eye on it and within a few years, it's likely that she will need a spinal fusion.That's one surgery I was hoping to avoid, but I know it's fairly common for people with diastrophic dysplasia.

Secondly, the pediatric team are still quite concerned about Maddy's hips. The joint is still very shallow and they are concerned about possible dislocations. If the joint really is at risk of dislocations, she may need a "hip containment surgery" to protect the joint.

For both of these issues, we will need an MRI in order to get more information. This should be scheduled for the next month or two - and I'm not looking forward to that! For MRI's, they need to place the IV cannula, which is always quite tricky and traumatic for Maddy (and me!!). You can read about our last cannula/blood test experiences here and here. The MRI in itself is fine, and Maddy tolerates the sedation well too - it's just the IV which is rough.

I was going to add some pics but blogger is taking forever so will add them next time. Hopefully I'll update sooner than next month!

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