Then when it came time to put the IV in, like always Phoebe handed her arm over, watched the entire thing and didn't flinch or whine once.
She did really well during the scan. Holding still when she needed to, holding her breath when she needed to, and remaining calm. I will say part of the reason she was staying so calm is because she thought I was in the room with her. When the scan was over and she saw that I had not been in the room the entire time, she began to cry such a heart wrenching sad cry. I immediately scooped her up and she wouldn't leave my arms for the next hour. (Even while walking across the entire building, up a floor and into the cafeteria).
We were waiting for our 10:30 am meeting with the first genetic counselor we were supposed to see. But because she was not fully caught up on the case and did not have the time to review the notes in Phoebe's file before our appointment, she decided it would be best if she waited to see us until after our 1:30 pm meeting with two geneticists and another genetic counselor.
I took advantage of the down time, and Phoebe and I went back to the hotel to rest!!
Once back at the NIH, we met with the team of geneticists and their genetic counselor. For two hours we went over a very detailed family history of every disease and disorder that is known about going as far back as 4-5 generations, Phoebe's extensive medical history starting with my pregnancy with her, and a very lengthy yet thorough physical exam.
The geneticists were more vague with their comments than the team we saw yesterday. They did say they see many "flags" with Phoebe, but not one giant neon sign. Basically what both teams of doctors said after spending a few hours with her is that it does not appear that there is one disease/disorder that is causing all of her symptoms with all of her systems. Rather it appears to be many diseases/disorders, each one causing issues with a specific system.
An example they gave is that they don't think there will be any way to connect her immune issues to her cardiac issues.
This doesn't mean they aren't going to try to connect all these "flags" and see if there is an "umbrella" responsible for all of it.
So now we wait for the teams to conference with each other and figure out what we do next while we wait on the results of tests they already ran.
Tomorrow is our last day here and thankfully it is not an early day! Our giant team meeting is at 10 am, so we get to sleep in!
To take a break from it all and soak up some history, I took Phoebe to the National Mall in DC. We walked from the Capital all the way to Lincoln's Monument and back! She loved seeing all the monuments, buildings and fountains. But she fell in love with World War II Monument!! We spent the most time there, sitting by the smaller pool with fountains, watching the lights and looking off across the Reflecting Pool towards Lincoln.