This post is overdue and outdated. I will write another update soon.
We spent a month in South Korea!
The day after we got there, my uncle in Chicago passed away. It was difficult because we could not make it back in time for his services, as everything happened so quickly. There have been multiple times where we could not make it internationally for a funeral, and each time is frustrating. On the other hand, because we stayed in Korea, we were able to meet with many other relatives. We went knowing this could possibly be the last time for my parents, as my parents are not likely to visit Korea again. We went with full knowledge that this was a very, very special trip. Other family went with us, and it was special for Alyssa to have that time to reconnect with her cousins, and discover a new second cousin her age!
We had more doctor visits: a regular physical exam before she starts middle school, and a regular checkup with nephrologist to see if we can continue to smoothly decrease her steroid medication. Her urinalysis protein levels are rising. Nephrologist said to maintain steroids and repeat test in 2 weeks. We repeated 2 weeks later and her protein levels are still trending upwards. Technically her proteins are so low that she’s still considered to be in remission. Her upcoming age-appropriate vaccinations are on hold. Next steps are to be determined.
She also had hip pain and has been limping for a couple weeks, but is now better. She got an X-ray and MRI, and nothing seems to be seriously wrong. Al was worried it could be AVN, avascular necrosis, on the femoral head, which is a serious problem, since she was on high dose steroids. Thankfully, it is not AVN. It might be impingement. We don’t know what it is, but the pain has cleared up.
One in a Trillion: Alyssa’s medical journey 