Run down of our appointment day.
We met with a new Neurologist, establishing a new relationship. This was an extremely thourough appt with a doctor who wants to solve Aimee's puzzle. She was like many a new specialist that sees Aimee, full of new ideas and enthusiasm to be the one who saves the day. She wants testing for mitochondrial disorders, muscle testing, metabolic testing, updated genetic testing, new bloodwork, a new EKG. Sound familiar? Yes, we have done all of that, but some of it has been 5 years(?!?) and there is new information, more specific tests available. We will go back in to see genetics and follow her requests, cause afterall... We still don't know.
We are also adjusting her seizure meds to keep up with growth. Nothing dramatic. Ths doctor called Aimee fragile and doesn't want to tinker with too much change at a time.
Next, we met with her Orthopedic Doctor who originally treated her clubfeet. He was very pleased with her surgery results, though a little less assuring that she will never have to have hip surgery again. Well, we know she will have to have a short follow up surgery this fall. He is concerned that her scoliosis is progressive and quite severe already. As he put it, "the spine drives the pelvis". He said they can't fuse the spine so young, but ideally you would do it first, because it is the strong force and could even correct the pelvis. We'll see what type of plan the surgeon recommends in a few weeks.
We now are adding back in night time braces again per his recommendation.
Lastly, we has an updated EKG done at the Heart Center, which was quite simple, but did make for an altogether tiring day. Particularly hard for Aimee, who hasn't spent such a long time in her chair since surgery.
Monday we met with Aimee's IEP team at school (teacher, OT/PT, SLP, EA, Psychiatrist, nurse). Making a plan for getting Aimee back to school in a couple of weeks with new goals. Maybe even adding a 3rd half day a week. More details to come.
