As we prepare to move we've been making the rounds to the various doctor's offices the 3 of us frequent (sadly there are quite a few!) to have final appointments and pick up medical records to hand carry with us to Nebraska. We learned during the last move that transfers of records from one doctor's office to another does not always happen in a timely manner and can really delay getting appointments with specialists. Today it was the Hannah's orthopedist we visited. Hannah was desperately hoping that Dr. Ehrlich would tell her that she didn't have to wear her Dennis Brown bar at night anymore, but such was not the case. Because it is actually working, thank heavens, she has at least 6 more months in it. She also has 6 more months at least in her AFOs and a warning that they will probably be a forever kind of thing. She WAS NOT happy about that, but I think she was even more upset about the bar. She has outgrown the shoes on her bar, but there are not any bigger sizes that can be ordered so we are going to have to slice off the front top part of the shoe and let her toes hang out over the sole a bit in order to get 6 more months out of them! We also learned a little more about how the Ehlers Danlos is affecting Hannah. Apparently besides the extreme laxity in her ligaments and unstable joints, she has a deformity of her sternum that is causing it to collapse inward. Right now it's not causing any issues, but the doctor warned that it is likely to worsen with age and that we will need to monitor it closely to ensure that it doesn't push into any of her internal organs. Her knees and ankles showed improvement from their various interventions, but her hips have actually worsened. So, we are off to physical therapy to learn various exercises to strengthen certain muscles to help keep her hips where they ought to be instead of allowing them to rotate in compensation for the knee and ankle issues. UGH! We really don't need more appointments at the moment with the move coming up and another specialist to track down once we land in Nebraska, but we want to avoid surgery down the road at all costs so we'll do what we have to do. So, that's pretty much it from the orthopedist. He was pleased about her progress, but not happy about the hips so those two things kinda cancelled each other out in his opinion. We'll miss him when we move because he is quite good. I'm hoping that Nebraska has some good medical professionals because we're coming soon and we need a lot of them!
The Little One Who Screamed
4 weeks ago