With the exception of Hannah’s bi-weekly cerezyme treatments, monthly visits to her pediatrician to keep tabs on her GD, and therapy sessions one to two times a week, Hannah hasn’t seen that many “white coats” in the past few months since we got the diagnosis.
That is going to change in a couple of weeks when we add these procedures:
1. Swallow study, April 16.
2. NeuroOpthalmology evaluation, April 2x?
3. PET Brain scan, Michigan, May (more details later, very interesting)
4. Lead genetics doctor — May/June?
And as I sit here writing this out, I know there is something important that I am missing…I’ll have to update this later!
I am not familiar with swallow studies – is she put under for that? what about the sedated hearing test? is that off the table for awhile?