Neurogenetics

I posted a few months back about how our amazing neurogeneticist left CHOP to move on to a VERY presitgious job at the NIH. While we were so sad to see him go we also knew it was a job of a lifetime for him. Anyway, we got moved on to a new neuro. I am very apprehensive because while he is a very highly acclaimed neurologist who specializes in genetically based neuro disorders he is NOT officially trained as an exclusive neurogeneticist. That makes me a little nervous. We have not yet met our new doc but will this week. We have our "Big Appointment" this week.

Once a year Abby is seen in the neurogenetics clinic at the main hospital. It is generally a five or more hour appointment which looks more like a dog and pony show than an appointment. Last year we saw a genetic counselor, a PT, an OT, a social worker and the neur. The appointment took hours and hours and hours. The worst part was that we didn't know it would be such a long appointment so I went alone and I brought almost nothing to keep her busy.

This year Brian and I are both going and we are going well armed. That being said I am still nervous. Appointments like these tend to lead to more questions than answers and generally yield several new appointments. The appointment is on Wed and I CANNOT wait to get it over with!