NIH: Day Two
Yesterday was exactly 6 months since Pacific was burned. 6 months since the last time I traveled. 6 months since my life changed forever. He’s officially spent more of his life hidden from the sun than not at this point. What a place to be on the anniversary of the day things changed for our family.
Today the girls were able to go exploring with Nama (my mom). We left for our appointments while they were still sleeping. We started off the day with Neuropsychology. This appointment was a piece of cake. With my early childhood background, I have been able to be confident about Pax hitting his milestones on time, and the visit mostly consisted of me answering questions about what markers he has hit in the social, physical, and other domains.
After this, we checked out the playroom on the NIH campus until our next appointment. Pax had the room all to himself with three grownups and loved getting all the attention. We headed back up to our base on the 13th floor after this, and met with a psychologist who specializes in families coping with major medical issues. I learned the challenges of attempting to keep an 11 month old perfectly still for a CT scan without the use of a papoose board or anesthesia (finally padding the area around his head thoroughly and using Coban tape and a soothing rendition of “The Wheels on the Bus” to keep his head in place for the few seconds it took to run the scan.) Neurology was next, and was a simple appointment, testing basic functions and again talking to us about what milestones he had reached.
While this may not seem like a lot of appointments in an entire day, we didn’t stop moving from the time we woke up until collapsing into our hotel room around 4:30. There aren’t many moments when we aren’t expected to be 100% on to talk to doctors, nurses, and specialists. We have an exhausted baby who isn’t sure what a schedule is any more, and parents who would think that with jet lag, they would be wanting to go to bed three hours late, not three hours early, but that isn’t the case.
I’m incredibly glad that we have this resource available to us. I feel less alone in some ways. I’ve met other parents who have children with incredibly rare life-threatening genetic conditions. I’ve met patients who are getting life-saving experimental treatments. I’ve met medical professionals who know each of their patients by name, along with their parents, siblings, and stories. Our nurse has dedicated the past 10 years of her life to work to working with patients with XP, and has been with us from the beginning of each day until we go back to the Children’s Inn, when she continues at the hospital for hours more.
There’s a lot of processing to do. I’m grateful for the quiet moments when Wes or my mom takes charge of the kids and I can sneak away to update this website and recharge for a bit. I’m grateful for the restaurant that will be delivering us some dinner shortly. I’m grateful for all of the people thinking of us back home.
Posted on September 24, 2013, in Uncategorized and tagged NIH, xeroderma pigmentosum, XP. Bookmark the permalink. Leave a comment.
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