Y. had an appointment with the people who are going to make her leg braces (AFO's -- ankle-foot orthotics) today. You would think, at least I did, that getting Y. sorted out was going to be fairly straight-forward. I learned long ago that seizure disorders and tissue and bone overgrowth are not so quickly sorted out, but R. and H.'s issues are part of a very rare syndrome. I figured from the outset things would be complicated and time- consuming. Cerebral palsy does not fit in the rare disease category and providers treat and manage it all the time.
Well, it turns out that would be true if Y. were a small child, in whom the CP was recently diagnosed, which is what would happen if she had been born in the US. It seems that seeing a nine year old with moderate CP and making a treatment plan is an anomaly and everyone is a little hesitant to be the one to start anything. It thought it made the most sense to get the AFO's and then starting therapy, since the orthopedic doctor thought the therapy would be useful in helping her figure out her assisted-mobility devices. At the orthotics place, though, they were hesitant to make anything before talking to the therapist because she seems to have two different needs. They did take molds, though, so once the therapist and orthotist talk, we don't have to go back in before the AFO's can be made. So, now I have a call into the pediatric therapy place to get Y. a screening appointment, so that the therapist can talk to the orthotist, so that the AFO's can be made, so that she can use them in therapy.
The other little May Pole I have been dancing around it trying to get forearm crutches ordered. The orthotics place (which was where the orthopedist thought I could get them) doesn't carry them. They did give me the name of another supplier, so I called them. That place has forearm crutches... but not for children. They suggested the orthotics place, which had recommended them. Well, today at the appointment, I was given some names to try online and was able to come home and order some hot pink ones for Y. At the rate we're moving, I'm quite sure these will have arrived before the therapy appointment.
Compared to this, making MRI and EEG appointments is a breeze. I know, because I've done this times two this past week as well. The second half of summer is shaping up to be just one fun-filled event after another. I know you're all jealous.