Titanium Amy…Out!

IMG_0748[1]Our final day began bright and early. TitaniumAmy had a whole body dexa scan. It was kind of cool. As she lay still, this machine moved both the table and the scanner into different positions to record bone density. This application of dexa scanning is only being used for research right now, so she’s truly a pioneer here…and all she had to do was lie still for about 5 minutes, including prep time! [UPDATE: Just got an email from NIH that said that these results were back and are extremely beneficial to research – and that as a result TitaniumAmy will be helping many people. #hero]

Following the test, we headed back to the Inn where the first order of business was to snip off the NIH wristband – patient no more – and sleep!! And, with that we switched from hospital mode to family mode! After napping, we took a Metro to DC, where staffers from the office of our Congresswoman, Mimi Walters, took us on a private tour of the Capitol. And, by private, I mean we got to go to areas I never even knew existed! Such a beautiful building and so full of history.

It was especially fun to go down onto the House floor and sit in the seats and touch the podium and hear about some of the security features (and I’m sure there are many we didn’t hear about). The highlight was going out on the Speaker’s balcony outside the offices of the Speaker of the House. The aides were young and enthusiastic – perfect for seeing DC with new eyes.

Just because I was proud…when we saw the statue of Rosa Parks back inside, Amy pointed out that she was not the first or only Black woman to refuse to sit. She told us about a teenager who was considered a “hothead” who was arrested for the same offense months earlier. To be honest, I thought TitaniumAmy was confused, but I stand corrected. Claudette Colvin was not chosen to be the one history remembered, but her story is fascinating – look it up!

OLYMPUS DIGITAL CAMERA
OLYMPUS DIGITAL CAMERA

A few final notes… We are officially done with our NIH experience, though have been told they’d like us back at some point to see opthamology and neurology. We do not know when that might happen, but of course if it does, we’ll keep you updated. We got most of the results of tests while we were there – some the moment the test finished! – but some we will wait for at home. Other things we are waiting for are our own UV meter and materials to start covering windows of home and cars…and of course Amy herself. It will be a learning curve. And, finally, next week we will be visiting Children’s Hospital LA to talk with the bone specialist regarding what we’re going to do about that femur.

We want you to know how much we appreciate all of the support we have received. Our girl is rare, but friends having friends willing to stand by our side through all the ups and downs of a journey like this are even rarer. Thank you so much!!

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