Today, Amy’s little brother had his first NF appointment with his geneticist. Amy tagged along, so that we can start getting their yearly NF appointments synced up. The appointment went well- nothing super surprising. Her brother has NF1 *gasp!* and they need to have their blood pressure and spines checked Read more…
Today we met our new doctor, Dr. Beres. Amy will be seeing her from now on to ensure that if she develops any tumors in her optic nerves, we can treat them quickly. Unfortunately, there’s no train nearby, so we had to drive. Amy was less than enthused- probably since Read more…
Today we’re at Stanford’s Eye Institute checking for tumors in Amy’s eyes. First she had a regular eye exam, looking to see if she had any common issues, like needing glasses, lazy eye, or any structural issues. (Nope) Then she checked her for any lich nodules (common with NF) and Read more…
Here we are, my little babies ready to meet yet another doctor. Dr. David A. Stevenson is a pediatric geneticist. I was trying to get in touch with him at the university in Salt Lake where he was dong a clinical study on NF patients with CPT. Turns out he Read more…
The plan for Amy? I have no idea. Once her orthopedist said that her condition was out of his area of expertise, he referred us to Shriner’s Children’s Hospital. They have her medical records, and should get back to me within the next 24 hours. Assuming they accept her case, Read more…
This is my beautiful little girl. Her name is Amelia Rose, and this month, she turns 2 years old. The big thing on my mind? Amy’s birthday party. We’re having a pool party, and it’s all about Elmo, her favorite character. Before today, it was the most important thing of Read more…