Today we saw our orthopedic surgeon for a follow up.  This is the gentleman who handles Lizzie’s AFO’s (ankle foot orthoses), her TLSO (thoracolumbosacral orthosis or back brace), and her follow-ups to her hip surgery which he performed a couple years ago.

The news today was all good.  He told us that he was impressed with Lizzie’s hips.  A couple of years ago, he performed a surgery called an epiphyseal arrest on Lizzie’s hips.  Lizzie has a hip condition called hip dysplasia which means that her hips were in danger of dislocating, the main reason in Lizzie’s case being her low muscle tone.  Her muscles just were not strong enough to keep those hips in the sockets as they were growing.  Our doctor had told us that if they got worse we would need to do a major surgery which involved cutting and shaping the bones and would be followed with six weeks in a spica cast.  This is a cast that goes pretty much from arm pits to knees and holds the legs in an outward position.  I couldn’t imagine how hard that would be for Lizzie to go through or how hard for me to move all that extra weight every time she needed to transfer from bed to chair and back.  But our wonderful doctor had another thought.  There was another surgery possibility.  It wasn’t usually used for Lizzie’s condition, but he thought in her case it might work, and help us avoid the more invasive procedure. He could try it on Lizzie, and thought that it was another way to go.  Essentially he put screws into the heads of her leg bones on the hip end causing the bone to stop growing, and preventing the ball of the hip bone to grow out of its socket.  The way it was explained to me is as the pelvis continues to grow, the socket would recover the hip bone.  So far so good.  He told us today that her left hip is great, and her right is better since he saw her last.  He did say that down the road he may need to do another procedure to put screws into the other part of the bone to prevent that from continuing to grow, but not yet.  We will explore that down the road.  Her hips are doing well for the time being though, and it looks like no major hip surgery will be in our near future.  Woohoo!

I also asked him about Lizzie’s AFO’s.  I don’t think in all the time we’ve had them if I’ve ever asked if they were a permanent thing.  He told us that if Lizzie continues to weight bear on her legs and build up her muscles, and she is not turning her feet out when standing on them, that there is a chance that down the road she may outgrow the need for them. More good news!

Finally, he checked her back.  I was happy to hear him describe to his residents a slight scoliosis.  It’s not perfect, but it’s slight.  We’ll take it.  As long as it doesn’t progress or become aggressive, we should be okay with just her back brace for now.

So for now we are holding tight.  And we do more stander and gait trainer at home to build up those leg muscles.  For now we wait.  We got new orders for her AFO’s and TLSO to be made in a couple months because she is outgrowing hers.  We see him again in June.  All in all, a good day.

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