|Don't take my post-doctor macaroni!|
Allie had her semi-annual joint Neurology and Physical Medicine and Rehabilitation (PM&R) yesterday. I had an all day work meeting that I couldn't miss so Jonathan and Allie went without me.
The only problem: they were both sick. We even tried to reschedule but the Children's Hospital appointment person told Jonathan to give her some Tylenol and drag her in. Otherwise, we wouldn't get another appointment until January.
Here are some key updates:
- Allie will be getting a Supra-Malleolar Orthosis (SMO), which is basically an ankle brace (shown to the right). When Allie walks, her right foot turns out a little bit. I don't know what it is about this brace that makes me totally uncomfortable. I think it is that I spend so much time focusing on her hand that I want to think that her leg isn't impaired.
- The neurologist is petitioning to our insurance to continue treating Allie. She was unimpressed with some of the guidance that the new neurologist had given us.
- Following the previous point, our neurologist does not think that Allie has a mirochondrial disorder. She said that Allie would be having a lot of serious health concerns and Jonathan said that she seemed shocked that someone would suggest such a diagnosis.
- Allie will be getting a maintenance EEG to check for seizure activity in a few months. This is just a routine check to make sure that Allie isn't having any asymptomatic seizure activity.
- Now that Allie is officially off Topamax, we upped her Trileptal level slightly to adjust for her recent weight gain.
- Still no botox. The PM&R doctor was impressed with Allie's overall muscle tone and he thinks that Botox would be too much.
It was a good appointment and what I love most of all is that Jonathan did it completely without me.
In other news, we are converging on a start date for Allie's second round of constraint therapy. We will be going 3 times a week for 8 weeks starting in late February. She has been doing so much great stuff with her right hand and I am so excited to see what another round of constraint will do.