14 December 2015

A season of firsts

Nothing goes quickly in the world of special needs and after a trip to Shriners in the spring where hip surgery was recommended, we finally got in to specialists in Chapel Hill for a second opinion and establish ourselves with an orthopedist closer to home.  I was thrilled with the level of attention and we got better information than from Shriners.

Liam's left hip is close to being pulled out of socket. He needs surgery to repair both the hip and the socket and while they are in there they want to do some adjusting to his right hip as well. It will be a 2 day hospital stay with a 4 week recover in full leg casts with an 18 inch bar keeping his legs apart the entire time.

He is going to be so thrilled.

He asked me if Liam is in any pain. He hasn't been in his stander for a few months because he started crying when I would put him in it so I assume that was due to his hip. Do you ever get a 'catch' in your hip? That will happen to Liam and he is uncomfortable. And sometimes his hips makes a loud popping noise if we try to do range of motion. But for the most part he seems to not be bothered too much by it yet. He could just also be used to the feeling because it has slowly moved out over the years.

Chapel Hill was actually disappointed we hadn't been seeing them for the last few years to have kept Liam's hip from getting this bad. While there are no gaurantees that it wouldn't have happened eventually, we will never know if we could have prevented this. I am so confused as to how he was able to get to this point with no one noticing.

I am hoping we can schedule surgery towards the end of the school year so Liam won't have to miss much school. I meet with the surgeon next month to talk to him about delaying the surgery and if he thinks that would be ok to do.

Next month we also meet with someone new: pulmonology. After a check with an ENT specialist, who has seen people do the weird thing he does with his jaw, she wants us to rule out anything pulmonology wise  (asthma, etc) before we look at ways to help him with this muscle issue. That also led us to a scheduled sleep study in February to see if Liam is having any apnea episodes with this while he sleeps.

After those things are done, then maybe we can look at doing something to help him with the dystonic movements in his throat and jaw. She said she wouldnt even really know where to begin right now and wanted to make sure there wasn't something else going on that needed more attention.

So here we are, in a season of firsts with new doctors, new procedures, new tests, and new treatments. Praying that things get easier for Liam soon.