Another full day at the NIH has come to an end. We started with medical photography. First a photo recording our whole family for posterity. Then, dad and sis were off for a few hours and went in search of Georgetown Cupcakes – a superior use of time. After they left things got a little silly. TitaniumAmy had to strip down to her skivvies (not really any worse than photos in a bikini – which might have been less awkward). She was photographed from front, back, and both sides. They took photos of ears and fingers, toes and even the soles of her feet. These photos will be used to track any changes, as well as for any publications or presentations. They are sending us a disk home to use for tracking changes on our own. No worries, folks…the photos won’t be in our Christmas cards. The final few pictures were of her, fully dressed, in front of a giant grid – think mug shot. I hope that’s the closest she ever gets to one of those!
Next up was a 1.5 neuropsychology testing session. Not much to say about that except that she wasn’t thrilled to have to do math!
Afternoon brought two all-family appointments. First was skin biopsies…The family that scars together stays together? Each person had a bit of skin cut from the armpit area. It wasn’t painful, but it is sort of odd to have multiple people standing around watching as it was being done (2 doctors, 1 nurse, 1 student in this case). Fortunately they’re all very nice, and for them you are literally the most interesting person in the world at that moment. [SIDEBAR: I just want to throw in here how proud I was of how Flawlyssa bravely going this extra mile for her sister – even when she was totally freaked out by the idea of someone slicing into her armpit]
We then had a meeting with the nurse, who filled us in on XP/TTD, what the processes look like, and what changes we will need to make in our lives from here to keep TitaniumAmy safe. Let’s just say it involves a lot of monitoring UV rays and protecting from the sun. There’s far more to it than you might think! They took Amy into the lobby of the facility to have her see a UV meter reading. It was 0 indoors. Outdoors it was a cloudy day…the UV reading was 485. To protect her from damage, they are recommending we keep her UV exposure to 20 or below. So…yah..there are some changes to be made. Other than that, they just answered a lot of questions.
Next consult was with gastroenterology, which was a lot more fun than it sounds. Amy and the doctor got into a long conversation about a bodily-function-related bit in the movie Caddyshack, and they were just cracking themselves up.
Last visit was for a brain CT. They will be looking to see whether calcium has deposited in her brain as it has in her eyes and kidneys. Kinda scary, but the easiest exam of the day.
Although the days are long and tiring, we made ourselves go out to Bethesda for dinner tonight. Getting away was really good, and definitely gave a boost to our mental health. We are extremely grateful for all the love and support we are getting on this adventure, and for the people who are looking out for our home and our puppy. I don’t know how anyone would get through this experience, as amazing as it is, without a great support system. So thank you all!