But what a lovely mess she is

We spend a lot of time on therapy and feeding and medicating in order to maintain but progress is harder to come by. It isn't very often I jump up and down and say 'yay Mya!'. Yesterday was a yay Mya! day. She rolled from her side to her back, which isn't a first, but she did it with such intention. Usually the rolling comes from more of a shoulder turn and the slightest of twitches. Last night she used her toes on her upper leg to push herself over. And she repeated the skill when I rolled her back and then gave herself a little congratulatory shout. Or maybe it was a shout at mom to leave her be because she had worked so hard to get there. Either way, Yay Mya! And this was much needed as it comes on the tail-end of some appointments that left us feeling like our efforts weren't nearly good enough.

Sometimes when the doctor leaves the room you just have to shake your head and look at this little girl. My dear, you.are.a.mess. The Orthopedist is recommending surgery to 'postpone'. I didn't leave the appointment feeling very confident that this was going to be the end all of the hip issues. In fact several times she mentioned getting Mya to a point where she is bigger and stronger to make a larger hip surgery an option. I don't recall if there was an 'if' attached anywhere in the previous statement. So the plan is to clip her hip adductor tendons to the point where she has a more 'normal' range of motion. And these things do grow back, so we will be preparing for Groundhog's Day. It doesn't sound very pleasant, but apparently it is a fairly minor procedure with the biggest risk coming from the anesthesia. She gets to stay in the hospital 23 hours. Something colossal must happen with the insurance gods at 24 hours because the doc did say 23 very specifically. They are coordinating with ophthalmology to get her Strabismus surgery scheduled at the same time, well back to back really, so that she only has to go under once. We are going to be talking with anesthesia beforehand to make sure we understand the risks which are assuredly higher for a kiddo with atypical brain anatomy. Cheerio.

In seizure news: We started Felbatol this week, bringing our seizure med total to 3. Its potential side effects include, in order of awesomeness: insomnia, loss of appetite, liver failure. We are required to take her for blood-work at several points over the next 6 months to watch for the latter, because, using the words of the very wise (I'm told) prescribing physician, 'yes, this drug can actually kill you'. Like I said, awesome. So far we have noticed pretty much the exact opposite of insomnia and a slight increase in seizure activity, but it is still early.