D.C. continued

The remainder of our stay at the Children’s Inn/NIH included audiometry testing, x-rays, a dental exam, and wrap up discussion. Thursday and Friday were our days to explore downtown D.C. and do whatever we want, before flying home Friday night.

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Before I forget, here is a picture of that “resting energy expenditure” test. Futuristic looking.

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The audiometry (hearing test) is always interesting with a baby or toddler. Lou was hooked up with special headphones in the soundproof room, and sat on my lap looking away from me. The audiologist spoke to Lou with a series of words, that we had previously discussed as being words that Lou understood. He knows a few signs that he can show as well, like, cow, sheep, pig, and body parts. Of course all Lou really wanted to do was get down and play so the test was not terribly accurate or helpful. It also didn’t help that he has chronic build-up of sloughed skin and also some wax in his ears, so the sound waves do not bounce around like they should. But overall, the audiologist concluded that Louie is hearing well, but he will need to be monitored for the skin build-up that may affect his hearing if not removed periodically.

One of the most interesting test results came from an array of x-rays that Lou went through. Believe it or not, we were able to get x-rays taken of all his bones. Louie actually handled the process fairly well, with the help of Dad’s funny antics and a yellow stuffed animal fish. Ryan held him in various positions under the x-ray machine, while Debbie, a medical student and I, watched the images appear on the computer. It was neat to see his little skeleton and teeny tiny finger and toe bones. The reason for all of this was to see if there were any underlying skeletal abnormalities. And to our surprise he was found to have more dense than usual bones in his central body, and less dense than normal bones in his legs (aka. osteopenia). This aligns with TTD, and not surprisingly, it is not known why this occurs. On the up side, there is not an increased incidence of fractures for some reason, as you would expect with less dense bones. One way to increase bone density is to do weight-bearing activities such as walking or running, and Louie has not been on his feet for much of his life, so implementing more upright activities should help the less dense areas. Unfortunately there is not a medication to help with this, because he has two extremes. Thankfully nothing unexpected (for the researchers) or super worrisome was found.
We also had the pleasure of meeting with Dr. Chambers in dentistry. Many children with TTD have dentition issues, which may be related to the erosion from stomach acid in the mouth during vomiting. Lou had not yet seen a dentist, so this again was a special meeting. Other than some thrush, of which I already knew about because he gets it from his inhaler, Lou’s teeth looked great! Granted, they have not all erupted yet, but he has at least 12. She recommended brushing twice a day with a “smear” of fluoridated toothpaste and to follow-up with a pediatric dentist every 6 months. We will also continue the reflux medication as it suppresses the stomach acid, and thus also protects his teeth during vomiting.

Our last scheduled event was a discussion with Debbie, the research nurse that was with us at all the appointments, Dr. Kramer, and a medical student, regarding the test findings and to answer our questions. Overall, the test findings were all consistent with TTD, giving us insight as to what to watch out for, follow-up appointment frequencies back home, and of course to provide information for research. They recommended we see a physiatrist (a doctor of physical medicine) to evaluate Lou’s mobility issues and to consider orthotics (we are set to see a doctor at Gillette in the end of August). In a way our sweet Lou was like a guinea pig, but we certainly were not treated like such, and all the testing was safe. It also provided us an opportunity to learn more about TTD and Lou’s case, because after all, the only experts on this are here. They plan on flying us out to visit every 2-3 years.

We left the Inn on Thursday morning, took a shuttle to the airport, and then a taxi took us to our hotel just down the road from Watergate.

And then for the rest of the day we walked, and walked, and walked. We tried to see as much as we could, and the weather was perfect.

At one point we were starving and couldn’t find a restaurant, so we bought a “giant hot dog” from a vendor, that turned out to be a 4 bite lunch. It was pretty humorous, but it tasted sooo good because we were really hungry. I think the heat was getting to us 😉

I will now tell you more with some pictures.

  This poem really hit home; it’s beautiful.

Yes, I LOVE feeding squirrels. And they loved my potato chips. Ryan was so embarrassed.

 

We can’t wait to go back.

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