We visited Dr. Segal today, like we do periodically, to take X-rays of Sadie's hips and discuss the progress of her socket development. (here's the background about this And here's the information about our last visit) It wasn't very hopeful.
First, the good news...
Sadie's feet are okay. She only needs to wear the AFOs (ankle/leg braces) in the stander for now. Once she starts school she'll probably wear them the whole time she's at school.
Her spine is okay, and her hands are good. We are going to switch to wearing the hand braces at night, because she wants to use her hands more and more and the hand braces sort of inhibit her.
But her hips are getting progressively worse.
Dr. Segal looked at me gravely and told me that he doesn't think Botox would be enough help, and that snipping her adductors probably wouldn't even be enough at this point. And he's concerned, because she's only 2. He's changed his recommendation at this point to major surgery, he called it osteotomy.
Here's an example of what we have going on. Sadie's hips SHOULD look like the left side. But instead, they look like the right. Well, hers isn't dislocated yet, so it's still in the socket, but it's straight like that.
What the surgery would do is cut her femur in 2 places, remove a big chunk and TURN that top part so that it's angled correctly like you see on the left. Pins would be placed in her bone, no casts, but at least a 6 week recovery (that WOULD set her back some in her physical therapy skills), then pins removed during an outpatient procedure.
Sounds drastic, right?
And then he tells me he is even more concerned because he doesn't like to do this surgery until kids are at least 4. I told him the earliest we could even CONSIDER something major like this in our lives would be next summer anyway.
He is worried that her hips will start dislocating and she'll be in pain. What do you even say to that? Nobody wants their child to be in pain, right? I mean that's basically telling me that if I don't choose to do this surgery I'm basically subjecting my poor child to pain that is unnecessary.
In the meantime, we see Dr. Kwasnica next week and we are going to discuss Botox with her. I still really feel like if we can loosen those tendons (temporarily) and use that time frame we have when the Botox is effective to stretch and widen those hips, we can maybe at least buy her some time. I know in the back of my mind that this surgery IS inevitable.
So, that's the story.
I'd really appreciate any stories of success from anybody whose child has had this surgery...I hope there are some.