We have SO much going on around here lately, it is just crazy!
- Our next National Institute of Health visit is already set and ready to go! We are going to be going during the kids’ Spring Break so they can go share this experience with us. I know they are going to have a good time at the Children’s Inn at the NIH with all the activities and themed dinner parties every day.
- Liver function tests. We got the results of Hannah’s liver tests back today, and they all came back in the normal range with the exception of her elevated GGT, which means there is something going on with her liver. Waiting to hear back from the NIH docs to see if they want to have a liver biopsy done or not. It is not extremely high, but the question is it high enough to warrant intense scrutiny or continue to watch it.
- EEG came back normal! I knew in my heart she was not having seizures.
- Liver size on abdominal ultrasound – back to normal!
- Spleen size on abdominal ultrasound – still “moderately enlarged,” 8.6 cm. The NIH is going to do another ultrasound and compare it to last July’s when we were there.
- Mild Right pelvo-calyceal dilation – new finding on ultrasound — we need another test to make sure there is no reflux of urine going back up towards the kidneys from the bladder. Waiting to see if we do that at the NIH too or here at TCH.
- Auditory Brain Response, Normal?! The reason that this is a questionable result is because the day after we took this test, we saw Dr. Roy, Hannah’s ENT. He was really puzzled with the fact that it could be normal because Hannah’s ears are filled with fluid still. So this is another test we will be redoing at the NIH.
- Gait Trainer. Hannah gets her get trainer next Wednesday. I am so so so excited for her! (here is what it looks like). She has been able to go about 40 feet on a walker during PT, so I KNOW she is going to be all over the place in this!
- Vegas move. Finding quality medical and therapy services is a full-time job on its own! Add to that trying to find decent schools for the kids plus a place to live plus getting this house ready to sell plus figuring out how to move…. exhausting, but exciting.
I think that is it for now! Phew…
Carrie,
Did the Gaucher docs ever tell you that Hannah’s spleen would not go back to a totally normal size, that it would always be slightly enlarged? This is what I was told about Noah. His liver is normal, but the spleen is not. Compared to what it was, I’ll take it!
Good luck with everything else and hopefully your house will sell quickly. There are some great deals on real estate to be had in Vegas. Good luck!
This could mean that she is storing lipids in the liver and not the spleen; however, that is only one possibility. Ask them to do a platelet and clot test before you allow them to do a liver biopsy, and make sure that they are well within a safe normal range.