When we first received our itinerary for this trip, it seemed so low key compared to our last NIH trip. Each day’s last appointment was set for 1 or 1:30. However, things didn’t exactly turn out that way.
We take a shuttle from the NIH to our hotel. It’s a 15 to 20 minute ride on the shuttle. Monday we arrived back at the hotel around 5. Eh….not too bad. Last night, we had to travel back from Hopkins which is about a 45 minute- an hour drive. The ophthalmologist came in after clinic hours to examine Rick and Eddie. Therefore, that exam didn’t even begin until 6 pm. We got back to the hotel around 9 pm. Today, we closed down the NIH Allergy and Immunology Clinic. In fact, we had to move into the Day Hospital to finish everything because the clinic closed.
It was a nutty day. After vitals, Eddie spent the morning getting pictures take. He had a DEXA scan and xrays to check his bones. Dr. Boyce, the endocrinologist was happy with the scans compared to last year. There seems to be stability. His vertebra look good and there is no compression which is a concern in LDS patients. Additionally, his bone density is on the lower normal to mild low range in most places. The most concerning area are his wrists. His bone density is below average. She recommends he increase his intake of Vitamin D and calcium through supplements and diet choices.
Then we had the wrap up with Dr. Pam and the team. Out of all of Eddie’s blood work, the only concern an antibody that is tied to a strong immune system was below normal. She wants our local pediatrician to repeat the blood test to make sure it is stable. She suspects it will be since he does not have lots of illnesses and infections.
Rick had a much more hectic day. They added hematology to his schedule after his lab work looked a bit irregular. Doctors suspect his body is overproducing a protein which has the potential to cause complications if not addressed. However, it appears to be easy to treat. He needs to return in the future for more testing to be done and to confirm this diagnosis. At this point, there is no indication it is related to the LDS. So bizarre.
Our return is likely the end of the month. Rick needs those tests and Eddie needs to return to dental. Eddie definitely will be returning in six months, however,