NIH Day 3

It was busy today. Both girls had several appointments at various departments. Cecilia had her swallow study and speech evaluation, followed by a physical therapy evaluation, photography and then ultrasound of her muscles. All of these tests are done to get a baseline to measure change over time. Cecilia did great, and there were really no surprises. There was a bit of waiting today, so she got to watch her iPad, which she didn’t mind at all.

Lilly’s day was supposed to be pretty light, but because of her seizure on Tuesday, we had to add back in what she missed. She had neurocognitive testing, OT, a neurology appointment, and a physical therapy evaluation. The one big thing we noticed was during her PT evaluation, she could not jump on her right foot for more than about 5 bounces. This is probably part of an ataxia, and we will learn more on Friday about it.

We have some family in the area, and went off campus to a fun playground and to dinner. The one thing Lilly requested since being back on the East Coast is hush puppies! Aunt Kim found the best ones for us!

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