One of the greatest blessings we have encountered in the medical world was the long awaited introduction to our neurogenectist. It took almost six months to get in to see him but the wait was well worth it. Within a month he had Abby diagnosed appropriately with RS and took so much of our guessing out of the mix. It was astounding how quickly we went from wondering if we would ever get an actual diagnosis to moving forward with a clear plan of action. Dr. Bonnemann helped us in so many ways it is hard to list them.
Today I got a letter that he is no longer Abby's doctor. He took a position at the NIH (wtg Dr. B!) and his department will now be run by a new doctor. The frustrating part is that the new head of the neurogenetics department IS NOT A NEUROGENETICIST. He is a neurologist with a "strong background in the genetic causes of nervous system disorders". I feel a little like we have lost a valued family member. It was nice knowing that if something came up we had Dr. B and his team to lean on. Now I feel like we are starting over.
We are hoping that this new doctor is a good one. We'll see in a few months.