The Fourth is Strong with This One


Dr. Di Giovanna, Nurse Deborah Tamura, TitaniumAmy, and Dr. Kenneth Kraemer

Day 3 with the Dream Team was a busy one. First stop was Radiology, where images were taken of TitaniumAmy’s titanium femur as well as her hips. People with TTD often have issues with their hip sockets that can lead to very debilitating physical issues. Fortunately, hers look great at this point.

We were very curious to see the break point on the leg. It turns out that the amount of healing in her femur is the equivalent of 3 months – She broke her leg 21 months ago. And, although they have some ideas about what is going on there, they don’t really know why it’s not healing or just how to help it.

Next stop was nerve conduction. That was not her favorite stop. Basically they put electrodes on her skin at the beginning and ending points of various nerves, and then they give her a little shock to see the nerves working. It wouldn’t have been so bad, but they do it on the right leg, which she had surgery on, and it took a bit of a strong jolt to get IMG_0717[1]athe required response. The hand was much easier! Amy made up a joke for the occasion:

Amy: I’ve got a new business!

Me: What’s your new business?

Amy: I’m doing nerve conduction studies.

Me: How’s it going?


Longest consult of the day was with audiology. First IMG_0731[1]awas a test that was quite similar to the one kids have in elementary school to see if they can respond to various sounds. The second was a brainstem auditory evoked response. Similar to the nerve conduction test, she had electrodes placed on her head and a series of clicks played while her nerve responses were recorded. Great thing about this study is that you can (and are encouraged to) fall asleep – and Amy did just that!

She also had a well-woman type consult, and though that was understandably uncomfortable, Dr. Meredith and the 2 students (who were Amy’s age) helped to normalize the situation.

And, finally, we all had a good sit-down with the medical research team to discuss their current findings. She had a joke for them, too…about being a dermatologist and not wanting to make any rash decisions. The two doctors (both dermatologists) laughed long and loud.

The biggest issue that has come up so far was the density in parts of her spine, hips, and femurs. In some cases, the density was more than 8 standard deviations above average. The chance of that happening is well below 0. So, being that we are at the NIH, our team went to visit the guy who developed the scale for bone density/dexa scanning. He suggested that Amy have a new type of dexa scan that is really just for research right now. And…being that he was “the guy,” it was arranged for our girl to have that test prior to the clinic actually opening in the morning. Though it’ll be tough to get up early, it is a fantastic opportunity.

Returning to the amazing Children’s Inn, we were treated to a special Star Wars (“May the Fourth Be With You”)/Cinco de Mayo mash up. Food was catered by On the Border and Georgetown Cupcakes, and there were lots of fun activities. And, if that wasn’t enough, there were also therapy dogs visiting – so it was a great success!

We feel really good about all that has happened and all we have learned. We will be coming back at some point for further tests, and in the meantime, we will have to make some major lifestyle adjustments. But, our overwhelming feeling is just gratefulness. We are grateful our girl really has far more about her that is healthy than is unhealthy, and we are grateful to have had this amazing opportunity. May the Fourth be with YOU!DSC_0041a.jpg

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