Neurogenetics

It's time for the annual dog and pony show. Each year we take Abby to the neurogenetics clinic where she sees a PT, OT, Speech therapist, social worker, neurologist, several student docs, the neurogeneticist and any other doctor who wants to check our a rare diagnosis like rhombencephalosynapsis. The first year we took her the appointment took about 8 hours. IT. WAS. AWFUL. She cried, I cried. I almost walked out. It was fruitful but horrible.

Last year was a little better. I was prepared for a long visit and brought everything but the kitchen sink. It took more like 3 to 4 hours. This year she is older and (sometimes) easier to occupy. I am hoping that it will be a shorter visit.

What bothers me is why the dog and pony show? We know her diagnosis, she gets services, she's doctored beyond what she should. Why are we submitting her to more crap? The answer, for us, is that we don't want to overlook anything. Each year they shed a little light on something we never thought of. They are also a good resource for answering all of the "stupid" questions that no other doctor wants to touch. Why is her hair so thin? Why does she get leg cramps all the time? Why can't she sleep well? And so on.

So this week is our annual visit. Hopefully she cooperate and hopefully it's fruitful. We'll see...