One Billion Stories: Rare Sisters
We have had the honor and priveledge to work with some very special and talented people who have offered to help us tell our story, and...
Basement Update: Help wanted
The Fries part of the basement is coming along! We are on to the fun part of flooring and trim, then onto storage shelves and installing...
NIH Day 5: Wraping it up
Today was the last day of testing for the girls. Cecilia had Neuro-Cognitive testing first thing this morning. This was definitely a...
NIH Day 4
Lilly had her sedated procedures today. She was not happy about it at all. She had to be fasting, and cried basically from the time she...
NIH Day 3
It was busy today. Both girls had several appointments at various departments. Cecilia had her swallow study and speech evaluation,...
NIH Day 2: Sedation, Speech, and a Seizure
Today was a lot. It was intense, and things became very real for us. I’ll start with Cecilia. She had her sedation procedures today. ...
NIH Research Week: Day 1
Yesterday, Jon, Cecilia, Lilly and I arrived at the National Institues of Health in Bethesda, MD. We are here to help medical...
