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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: Asleep or 80mph. Needless to say, she was fine coming out of anesthesia, and back to her normal self with in an hour.

Part of this natural history study is a parent sub-study. Jon and I are both participating in it. Last year we had a blood draw. This year, a skin biopsy. Dr. Dang Do punched a hole in my arm and will use my skin cells as part of the research.

Lilly finished up her 24 hour EKG this morning and she was excited to get all that tape off of her body. Lilly had speech/swallow, audiology tests, Neurology, and functional applied biometrics (PT evaluation). Jon has been enjoying his time with Lilly. Those two are bonding all over again. She did great with all her tests. We will have a big wrap up on Friday with results, but she has been tolerating and cooperating well.

We treated the girls to dinner out at Benihana- a full sensory meal. Even though they couldn’t really see what was going on, they could hear the music of the food, and smell all the flavors coming together. It was a good night!

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