I spoke with genetics today. Answered lots of questions. We have a
genetics appointment August 6, 2013 at 9am here in Wilmington. We were
thinking we would have to travel to Chapel Hill but the Satellite Clinic
is running again :) Yay!
One of the areas touched on, the question of whether my mother actually
has neurofibromatosis, seemed of particular importance to the
coordinator. As did the fact that my mother, sister, myself, and Clara
all have freckles. She also requested Claras's neurological evaluations
and results and my pregnancy records. She asked if I ever had an NF
screening. I have not, and said the Doctor may wish to examine me as
well. This seemed of particular interest to her.
The conversation lasted at least an hour. Glad I could offer good
information and still willing to do whatever it takes to help my son.
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