Thyroid update

Rylie's energy levels seem to be much better lately because of the thyroid medicine she is taking. We will go to the endocrine specialist as soon as they can see us which may be a little while. In the mean time, the BMT doctor will monitor Ry's thyroid level. One of our friends who has thyroid issues mentioned that after Ry's thyroid levels are corrected she may grow hair faster. In the last week or so, I've been learning more and more about how important this organ is, and I'm very thankful there is a fairly easy way to correct it when is stops working. Because of our experience, I've asked both Children's Hospital and our doctor at the U in Minnesota why they do not automatically test thyroid functions until 1-year post transplant. It seems like a good idea to test at 6-months since so much is effected by the thyroid. Both hospitals said they would discuss it, but I haven't heard if they will change their testing protocol to include the thyroid panel or not. 

Rylie also has a rash on her scalp that looks like dry skin. She's had this off and on for awhile now, but it really flared up last week. Our doctor at Children's wants to stop the CSA taper until we know the rash is not GVHD. We're going to try a special shampoo, and if the rash is only dry skin the shampoo should help. If it doesn't help, we may need to stay on CSA for a little longer. We're happy to do whatever we need to keep Rylie GVHD-free. 

We're still using the NG tube some for fluids for Rylie. She will now take sips of water a couple of times a day which is better than she's done is a long time. She's eating about the same--only baby cereal, puffs or chips, and baby food jars. She's getting a multi-vitamin and a calcium supplement as well.

We ordered new glasses for Rylie last week, so we hope to get them by the end of this week. This time we're trying the transitional frames to help with Rylie's light sensitivity. Hopefully we'll be able to keep these in place better than her current frames.