This week has been pretty busy. We did get a lot done though. Casey had a good GI appointment on Monday. Since she was sick we have had to go every 2-3 months to GI. After this appointment that doctor felt that Casey has stabilized and we can go back to our 6 month schedule. That was good news.
On Wednesday Casey met with a new neurologist to get his take on Phenol, Botox, etc. Since the Phenol injects into the nerve instead of muscle he was saying it can be a little tricky. He does not like to do them in his office, but rather in OR under sedation. That’s a big deal. We do not find many things anesthesia worthy with Casey. The risk is so big. He understood our concerns and is going to try something else. We are going to go to his office and he is going to inject a Lidocain Block. The results will not last long. We should be able to get a realistic expectation of how she will react with the Phenol from this test. Then I think we can properly determine if the risk with sedation is worth it or not.
The doctor also suggested getting Casey some acupuncture. When we were in LA she went weekly to get Craniosacral Therapy. The therapist would often do a needle or two as well. Casey loved getting these treatments. I had not found a good person to take her to here that also takes insurance. We are going to try a guy next week that was recommended. If Casey likes it we may try to set up a regular session for her.
I met with Casey’s school yesterday. Half of her therapists have left the district and so Tim and I took some time to do a little research. There are a few schools in the area that have good reputations with special needs. There are fewer however, that deal with severe complications and fragile students. We are working with her current school to see about getting Casey transferred into one of the medically fragile campuses. We are just getting started on what we expect to be a pretty complicated process. As we get details I will post more.
Have a great weekend, and fun Friday the 13th!