We’re baaaack! TitaniumAmy and I have returned to the NIH to see some specialists we missed last time, and to get an idea of any changes that might occur in a year with her XP/TTD Complex.
We are fortunate to again be staying at the amazing Children’s Inn at the NIH (www.childrensinn.org). We are so glad they have added an extended young adult program! Otherwise, it would have been a generic budget hotel for us this year. The Inn really is the best fit for our girl, and I can tell how comfortable she feels being back in our room from last year, seeing everything familiar around her.
Tonight Inn residents were treated to performances by students from West Potomac High school, after which they opened an open mic for anyone who wanted to try singing. Of course, TitaniumAmy jumped up first.
Her choice of song? “You’ll Be Back,” from the musical, Hamilton. It’s basically a break-up tune sung by King George with such lyrical gems as, “I will kill your friends and family to remind you of my love.” It was fun to see her out there embracing the experience. She even got the audience to sing along! And, after she broke the ice, several other youth took their turns as well.
Oh…and the power pose here with her “backup singers” from the high school was all done under her direction! Good start to this adventure. Clinic visits start tomorrow!