Alrighty…medical questions. (And June and others, I will get to your questions next!)

Please remember I am not an expert at all…this info is what I have learned from talking with specialists and other parents, and being the over-achieving researcher that I am.

I can say that St. Judes, our children’s hospital Ped. Infectious Disease clinic and the other families we spoke with all gave very similar information, and none that was conflicting, which was very encouraging.

First off, Steph asked, “How often do you have to leave your area for medical care for Belane and how far do you have to go?”

We have to travel three hours (each way) for any sort of specialized medical care. We have an excellent children’s hospital and several large, top-notch university hospital systems in Salt Lake City that we use. We also have to travel that far for significant shopping, airports, etc.

Since it is a trip we make fairly often, it has become very routine for our kids, and they make the trip without any fuss.

For Belane, we will go once this week, and then from what we have been told, we will return again in a month to see how she is doing on her meds. After that if she is doing well, she will have quarterly appointments…so we will be going four times a year. At the appointments they do blood tests to check viral load, CD4 count, CD4 %, etc. and monitor how the meds are working. Of course they will check her overall health and any concerns as well.

Quarterly visits and blood tests are the “norm” for kids with HIV, although we have been told by our doc and other families that many kids have their HIV become undetectable (extremely, extremely low amounts in their blood) once they are on their meds and do so well that they drop the appointments down to twice a year.