The girls have been tolerating the tests and exams better than expected. Although, this year we have definitely seen more behavior and resistance from Cecilia. Wednesday was a busy day day for both girls. Cecilia had her heart echo, PT evaluation, and EEG. Her true colors were starting to show by the time we got to her EEG. She was getting feisty, and feeling pretty done. I can’t blame her, but we are super proud of her for pushing through and putting up with everything

Cecilia had her day under anesthesia. They were running a little behind schedule, but Dr. Dang Do and Cecilia had a thumb wrestling tournament while we waited to get started. She had brain MRI, spinal tap, eye exam, and hearing test. She did great, and they even finished her proceedures early and I found myself running across the hospital to make it to recovery before she woke up. I made it in time, and I’m glad I did because she had alllllll the questions. "Mommy, where

The girls did fairly well today. It was busy- especially for Cecilia. She had 7 different appointments. The biggest finding for them was what we already know about their vision, but putting actual data with it is difficult for us to hear. Cecilia- (2018: CF @ 5 ft.) Left AND Right eye: Hand motion only Retinal change is minor. Optic nerve is more pale (optic nerve disease/temporal pallor), indicating degeneration. Lilly- (2018: 20/250) Right eye- hand motion only Left eye