We had Kendall's appointment with her orthopedic Dr. yesterday afternoon. They took a few more x-rays and delivered the news: she does in fact have bilateral hip subluxation. When she's on her back with her knees out, her hips go back in socket. When she has her legs straight out, they are a little over 50% subluxed.
Her spine is fine. No scoliosis.
We will begin botox next month. She will sleep with a wedge. Hopefully this will help, but it won't fix the problem. Muscle surgery (and the body casting for 6 weeks after) will likely happen for Kendall sooner rather than later. I am investigating (aka...utilizing my global resources!) different hospitals, procedures, and options just to make sure we make the right decision. Again, I wasn't ready to cross this road so early, but we play the cards we're dealt. If any of you have experience with this, I welcome your input!
Her urodynamic testing was scheduled for February 29. That was the earliest appointment they had. I don't usually accept the first answer I'm given, so I called back twice to see if there were cancellations...despite the nurse's first answer of don't call us, we'll call you from the cancellation list! Fortunately, there was a cancellation and my persistence paid off. She's now having the test next Thursday with the neuro urologist (who knew that guy existed?) and a follow up that afternoon with her urologist. From there we will make further decisions.
So, that's the latest. I'm still pretty emotional about it all, but since I've been super busy, I haven't really thought much about it.
Tomorrow I am going to a meeting at Kendall's school to learn the second device in our trial. It's a PRC with Minspeak. (insert my squeals of joy here) I'm excited that there's now a plan in place. She should have her own device by Spring Break, and there is training already in place for all that interact with Kendall.
January is plugging along. I only had three fits in the pharmacy line this month, so the year's off to a good start.
1 week ago