Tomorrow is going to make for a very interesting and busy day!
At 9 am, we have our first meeting with the Medicaid Case Manager regarding getting Hannah on the Katie Beckett Program (medicaid). I have done enough paperwork to kill five trees already, and I have another stack that was requested by the case manager for tomorrow.
At 1pm, Hannah has her first visit with her new pediatrician, Dr. Carrie (her last name is quite long). This is the same pediatrician we have been using for Ethan and Abigail, and we think she would be a better fit for us with Hannah. Our other pediatrician we had been set up with was nice, competent, etc. But she is only in the office once a week because of hospital rounds and being a professor. When we needed to see her, we always were told we could see a resident. We don’t want a resident who knows nothing about Hannah. Dr. Carrie has a great reputation, local, and works almost every 5. She is very easy to get in contact with.
At 3 pm-ish, we have a very special visitor coming to our house. Dr. Lopez, Hannah’s neurologist from the NIH, is going to be in town for a conference and has offered to come visit with Hannah at our house for a bit. I’m looking forward to her opinions on Hannah’s progression (even though she is more familiar with adult Gaucher’s), her chorea movements, and just send back an overall update to Dr. Sidransky at the NIH since we won’t be able to visit until Spring. We feel very grateful that she is willing to take the time to come visit with us!
Phew…. busy, busy day for my little girl!
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