Catch up

We're glad that it is finally Friday, and Rylie only has one more appointment (Orthopedics this afternoon). Now she is trying to catch up on some zzz's while I catch up on blogging.

Rylie's carpel tunnel test came back negative, and we're relieved to know she won't need hand surgery this year. Her MRI did not show anything alarming either. If fact the doctor commented there may have even been a slight improvement over her previous MRI. Some Hurler kiddos develop a narrowing of the spinal cord in the neck area. We are happy to report that Rylie does not have any of this spinal stenosis at this time. She will get another MRI next year to make sure there is no change.

We saw endocrinology this morning, and we loved the doctor. She was very informative about the clinical studies for growth hormone therapy for kids with Hurlers that she has conducted here at the the UofM. Fortunately, she doesn't think Rylie is a good candidate for that right now, because she is growing really well this year (8 cm in one year, along with having a disfuncitonal thyroid and major chemo)! She said that many times kids with Hurlers will stop growing around age 5, 6, or 7. If Rylie does stop her growing then, we might consider using growth hormone because it may help her bones and other organs as well. The doctor just started a new study to see if growth hormone helps more than just growth, along with more research on the side effects and dangers. (It is ironic that we would ever consider growth hormone for our child when we don't give her milk from cows who have taken growth hormone.)

We will be following up with our ENT doctor back in Denver, because Rylie's hearing test was less than perfect. When they measured the movement in her ear drum it was flat. This could be that that her ear tube is clogged, so she needs to either get her tube cleaned out or replaced. Hopefully we will get this resolved soon.

Rylie made a new friend last night. His name is Danny, and he has Hurlers. He had a BMT over two years ago now. We were very happy to meet him and see how well he is doing. We have also been having a Hurler party every evening with our friends Gracie and Wyatt who have been back here all week for their anniversary visits as well. Any time Rylie sees them, she says "play!" It's cute to watch Rylie around other kids, and it has had a positive effect on her! The first night we were all sitting around the table eating, Rylie saw Wyatt and Gracie eating a chicken nugget, and she decided to eat one too! She has never eaten anything with that texture before, so we were thrilled to see her try it. Then last night she had about five bites of corn! She is still eating her baby foods, but we know we are getting closer to ditching that. I'm so happy about that possibility!

Also, some of Rylie's labs have come back, and so far her immune system functions look great. She has a good amount of T-cells now, and the doctor says she can be around groups of kids again! We're excited, and we're planning music class for our dancing girl this summer!

We're still waiting for the results of Rylie's engraftment and enzyme level tests. They take a couple of weeks, but we'll post that once we know more.