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NIH 2019 | Days 3-5

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. Lilly had her NeuroCognitive testing and OT evaluation on Wednesday. This makes for a long and mentally exhausting day. She did really well though, and even did better than last year on her neuro-cog skills. This i

NIH 2019 | Day 2

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 am I?" "I am HUNGRY!” “What’s that sound?” “Do I have a blood stream?” “Is this my room?” "Mommy, where am I?" "I am HUNGRY!” "Mommy, where am I?" "I am HUNGRY!” "Mommy, where am I?" "I am HUNGRY!” She has two speeds: As

NIH 2019- Day 1

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- 20/800 Weaker right eye, could resolve large letters at 3 feet only with left eye. OCT scan shows subtile changes with dramatic effects in central vision. Degradation in right eye is consistent with cln3 and incidental

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