Today was our PMR appointment with Dr. W. This is the course of action we have decided on for now.
*Call The Wheelchair Shop to have your seat adjusted. We discovered your tailbone goes towards the left. So while scoliosis isn’t a problem that needs to be addressed at this point, you look crooked when you sit. This can be fixed by leveling your seat pad accordingly. We also need him to adjust your stander.
*Take a script to Dynamic Orthotics for a hensinger collar (for use in chair to bring head forward), TED stockings (for circulation in feet/legs), a SPIO suit (compression for body awareness and support).
*Gradually shave down incline of shoes as you adjust.
*Look into aquatic therapy and massage therapy.
*Increase your diazepam to 1 ml, twice a day.
*Get a speech eval so that we can seriously pursue switches as your primary communication device.
*Use kenesio tape for positioning of feet and wrists.
I left the doctor with a thick stack of papers and what I felt like I was a huge to-do list. But it looks much more manageable written out like this.
She also explained to me that you have dystonia. It is a neurological disorder that affects muscle movement. No treatment exists other than positioning. But it explains some of your odd movements and behaviors. What I thought was seizures 18 months ago (which led us to discovering your hydrocephalus) is perfectly explained by dystonia. Just good to know.
I am also glad to know about your tailbone. You have always had such a…different….little bottom. During the appointment I mentioned your tailbone to Dr. W, and she sort of rolled her eyes and said, “Ahh, the tailbone. Parents are always worried about the tailbone, and it is almost always fine.”
But in the usual Audrey fashion, when she took a look she had to step back a moment, looked again, repositioned you, and then said, “Huh. This is interesting.” Going toward the left makes sense—now we just have to figure out how to make you sit on your sitting bones, instead of you crooked tailbone.
There is never a dull doctor’s visit with you Missy Moo, that is for certain. Thanks for always being such a trooper. You never complain about having to go into the Med Center, when you have every reason to. Maybe it’s because you know that we almost always make progress whenever we visit a doctor. Or maybe it’s just because you are the sweetest girl ever. Probably that one.