Our First Day at NIH

After a day of travel, today was our first day at NIH, and what a day!

The National Institutes of Health study a number of rare conditions, including xeroderma pigmentosum. While there currently is no cure, they hope that by studying individuals who have this diagnosis, they will one day be able to treat it. We feel so grateful that NIH was able to bring my mom and the girls out to NIH with us. After their donation of some blood for XP research, they’ll be able to explore DC whenever they don’t need to be at the clinic with us.

We left Seattle at 8:10am yesterday (requiring us to be at the airport at 6:10am). This was Wes’ first time flying with kids, and Pacific’s first time flying in general. We were disappointed that Pax’ seat near the window had UV reads too high for our comfort once we got above Seattle’s cloud cover, but he was generally agreeable and even napped twice while we were in flight. After a 4+ hour flight, we landed in Washington DC in late afternoon, followed by my mom’s flight getting in within an hour of ours. After catching a shuttle, we arrived at the National Institutes of Health campus around 7pm local time.

We took care of hospital admissions early, and were able to settle into The Children’s Inn, a special facility that is set up for families receiving care at NIH. Various businesses and community groups provide dinner to families staying there several times a week, and despite the late hour, we found taco fixings in a community fridge, along with a pantry stocked with things we could eat for breakfast.

With darkness already set in, but us on West Coast time, all three kids (okay, and the parents too) got to explore the amazing playground outside. This was Pax’s first time playing on the swings and other such things since the day he was burned, 5 months ago. I never would have pictured our life taking us here 6 months or a year ago, but at that moment as I watched my kids play, life felt right again.

We were up bright and early for our first day of appointments, starting at 9am local time (6am for those of us from the other Washington!) We were greeted by the wonderful Nurse Debby Tamura, who had been the one to give us our presumptive diagnosis over the phone, and talked us through many of our questions. There were the usual consent forms and history taking, which took up the majority of the morning. Wes and I had skin biopsies taken so that they can grow skin samples. The entire family, including Nama, had blood drawn and their skin checked for any abnormalities. The afternoon ended with a photo session of all of us with closeups of the little guy in order to track any future changes. Nurse Debby was with us the entire day, guiding us from one appointment to another. I had heard such wonderful things about her from my friends in the XP Family Support Group, and they were all proved true today!

One expected, but disappointing part of the day, was hearing that they have found difference’s in Pacific’s DNA. There are 8 different types of XP, and we will likely find out what type Pacific was born with on Wednesday. This most importantly should give us a better idea of the likelihood of neurological issues as he gets older, enabling us to better plans for his needs.

Tonight we again ate a community provided dinner, and Wes took the provided shuttle to the grocery store for a few needed items. The kids made their rounds of the playroom, outdoor playground, games room, craft room, and toddler play area. Arcadia is honing her skills in air hockey against her mother and sister. The Children’s Inn has even more spaces than this, including a learning center for those with longterm stays, a teen room, exercise room, reading areas, quiet rooms, and more.

Tomorrow we delve into the workings of the brain- seeing neurology, neuropsychology, and a CT scan among others. Much of this is to establish baselines for Pacific so that we can track any changes that may occur as he grows. The girls will be able to take the Metro from the NIH campus and get their homeschool work in for the week exploring national monuments and museums.

 

 

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Posted on September 23, 2013, in Uncategorized and tagged , , . Bookmark the permalink. 4 Comments.

  1. Glad to hear your experience there has been positive so far! The facility sounds amazing, and I’m really interested to hear about which time of XP Pax has. Thanks for the update!

  2. Mel, I have another friend who also has a child with a rare condition and I look at both of you and admire your strength and knowledge. .and how both of you do so much. She, too, has those times when she is knocked down but just like you, she gets back up fighting. Both of you have writing abilities. Many of us are out here physically but with you in spirit.

  3. Thinking of all of you and sending you love.

  4. Thanks for sharing. Fun to re-live memories of our trip to the NIH.

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