Ellie Attends Inauguration

Ellie had a wonderful flight and we enjoyed going to Senator Hagen's office where everyone was really nice. They gave her the invitation and tickets to the Inauguration and I took a photo of her. Then we wandered ALL OVER DC – all the way to the Potomac.

The Jefferson Memorial was cool, but Ellie said that she had never seen such a beautiful color as that of the Potomac River...  Ellie White at teh Potomic Ricer in Washington DC for the Inauguration of President Barack Obama(I just have to mention that she sees colors differently than we do due to the WS... not that it wasn't pretty ;-) ) and the Cherry Trees, the Washington Monument, the White House, the Capital Building and everything in between.Ellie White viewing The  White House At about 5pm her feet were tired and she wanted to see if our hotel had a pool, so we headed back. The pool is outdoors so it was closed for winter, so we decided to relax and watch a movie together on her ipod.  Ellie White in the hotel in Washington DCUnfortunately, shortly after we got snuggled in for our movie, she began experiencing abdominal pains. They rapidly grew in severity until she was too weak to stand and on the floor in the bathroom. She was very scared (as was I – of course) and she asked me to call an ambulance. She was very weak and shaking and she was afraid that she would have a seizure or pass out. The EMTs arrived shortly to make sure Ellie White riding in the ambulance in DC for the inaugurationshe was okay and decided that she needed to be transported to National Children's Hospital with sirens and the works. I took a photo in the ambulance, and she looks pretty miserable. (I was trying to joke around a bit and cheer her up, but she was just so uncomfortable and frightened.) Anyway, at the hospital they did not end up doing anything for her. Sadly, it was a case of "Wolfram Syndrome – how do you spell that?", where only Ellie and I know what we are dealing with medically. Our endocrinologist has given me her home number and asked us to contact her if we are heading to the ER, so she can call to ER attending physician prior to Ellie's arrival to consult with them in order to get good care for Ellie… now that we are dealing with Wolfram Syndrome, it is far more challenging to get good care as no one has ever even heard of Wolfram Syndrome… our education is paramount to protect Ellie. Sad but true.

Anyway, at midnight or so, Ellie was feeling much betterEllie White in the hospital in Washington DC and asked if we could go back to the hotel. With a bit of prodding from both Ellie and me, we convinced them to discharge her, we took a cab back to the hotel, and slept. Naturally, I was very worried about her and tested her throughout the night. She was WIDE awake and feeling GREAT at 6am and ready to go to the Inauguration – but I finally got her to go back to sleep for a couple more hours – I was worried that she needed more sleep and we did not need to get going that early anyway. She was just SUPER EXCITED and could not sleep and wanted to go to the events! We finally left for the inauguration, and spent a long time in long lines in the cold, but with great attitudes and excitement. Finally we made it ellie White in a tree to get a good vantage for the inauguration of President Barack Obamainto the Capital and watched and listened (she climbed a tree to get a better view)ellie White climbs a tree to see the inauguration of President Barack Obama and when it was done, we wandered about DC to explore some more as she was feeling great! We wandered around China Town and the Smithsonian American Art Museum, where we learned a lot about the Civil War, the Emancipation, and Abraham Lincoln... and other stuff!Ellie enhoying herself in Washington DC at the Inauguration

We wandered around DC some more and had to break to have some hot chocolate – which she said was the BEST IN THE WHOLE WORLD – and had to race off and get another cab back to fetch our bags from the hotel and off to the airport. We had a fun flight home and tons of wonderful memories.