We leave for Boston this weekend, and I am very excited to meet the other kids and families. I am anxious about the appointments but also very curious. I am hoping that these doctors will take an active interest in getting to the bottom of Makenna's condition. I spoke with the researcher in LA earlier this week and she seeemed truly fascinated with the fact that Makenna seemed to be able to move her eyes to the middle. Of course, she hasn't physically seen her before, so it's hard to say. But my sense was that was I was describing was not consistent with the findings of HGPPS, but her MRI was. So, it will be very interesting to see what the people in Boston have to say and what their recommendations are about our genetic testing.
I will post when we return on Tuesday night.
You can see pictures of her out of cast here: