NIH Days 9 and 10

Yesterday we decided to head out again and explore a little but we wanted to be wise about time and energy so we took the Metro into Bethesda and walked around an outdoor mall. We found some coffee... went to an Amazon book store... Brent drooled at the Apple Store while I drooled at Pottery Barn... and then we succeeded at our goal, we found yummy food! While walking around we smelled an amazing smell and decided that wherever that smell was coming from was where we would eat. It led us into a little French restaurant. Its tasted as good as it smelled and the prices were very reasonable (especially for the area). They also had huge macrons which are one of my favorite things in life so Brent and I split one. We picked up a cupcake and a buckeye bar at a local bakery and then walked back to the Metro. Brent worked from the room for a while and then I hopped onto a phone meeting I had at home. Overall it was a really calm and relaxing day.

Today we all needed to fast for labs which meant Brent and I could not eat after midnight and the girls needed to be switched to water at 3am... I woke up at 3am however I could not remember why I was awake and fell back to sleep until 5 when I woke up in a panic. We switched the kids to water and I tried to fall back asleep but that did not work so I started our first test of the day... Brent and I had to do 5 saliva collections today... I never understood how hard it is to fill a vile full of 1.5ml of spit before lol. I then started getting moving for the day.

We headed over to the hospital and headed to labs... rough would be a good word... It took 2 sticks to get my 5 viles... and 2 sticks to get Lydia's 18 viles... and 4 adults to get Jillian's 18 viles... Brent was fine but the whole thing took almost 2 hours. I was sweaty and SO hungry/tired/exhausted buy the time we were done! We came back to the room and transport picked us up to go to the ped clinic... we got there and they were super confused as to why we were there. After a few phone calls they figured out that the neurospych team were coming to Jilli's hospital room so we headed back there and Brent went to find us some breakfast (13 hours of not eating was creating a hangry Amanda!)

They started by asking us some questions and then Lydia, Brent and a tester headed to the playroom while Jilli and another tester worked in her room and the head tester and I headed to a different room to go over developmental questions. We all worked together for several hours. When they left they left me with a stack of more questionairs to fill out.

Our coordinator came to check on us while Brent ran to pick us up lunch and Jilli a different tube belt because her's was falling off. I worked on paperwork and the social worker came in to check in as well as the teacher from the school. Then transport was back to take us up to photos. Our kids were over today by this point and had little want to have photos taken of their feet, hands, posture, height ect... but we made it. We stopped at the store and picked up NIH t shirts which Jilli had been asking about for days.

We headed back to the room and our team came to meet with us. They let us know that with the forecast the hospital will likely be working on skeleton crew tomorrow.

Then I headed with the caregiver research team for my parent interview which took a couple of hours. We got back to the room and waited on formula and then headed back to the inn.

When we arrived at the inn the  chaplin from the hospital was playing music with kids and volunteers were leading an art project. The kids bounced between the two and we ate dinner. Then we headed back to the room and Jilli opened one of her surprises from her friend Caroline and mail came with multiple fun surprises!

The kids are in bed now and I still have one more spit collection to do and then it is off to bed!

a stuffed version of norovirus lol... they had multiple different stuffed things like that

Normally they sleep elevated and they have both woken up most days with a stomach ache but they have also begged to sleep together this trip... normally Lydia will not cuddle with Jillian so Jilli has loved this