Here is Gracie getting her MRI done on Monday like a rockstar!!! We're so proud of her.
Ok, so we really only have Endocrine left to report on. The news from the Endocrine doc was not really good, but it certainly was not a surprise to us. Gracie is obviously vertically-challenged, and her short stature is because of the Hurler's Syndrome. Over the past few years, her growth velocity has slowed tremendously and she is now in the 3rd percentile for her age in height. This is very common in kids with her disease.
To start, her doctors have now started her on Synthroid to try and boost her thyroid to try and amp up her Human Growth Hormone production. We also are going to need to have a full HGH work up done in the next few months to determine if she will need to start the hormone injections. We are assuming that she will eventually need them in order to maximize her growth as best we can, however we certainly are not looking forward to the idea of daily injections. Poor Gracie. :(
There was a concern last year the she may be entering early puberty (God help us all!!!), and although the tests are not back yet for this weeks visit, the doc feels that this is not the case. I certainly pray that it isn't... We will be anxiously awaiting those results for sure!
All in all, that sums up Endocrine. That was definitely the worst of the entire week, and since we were expecting to hear most of it, we were prepared and it wasn't bad at all.
We then went to hear the results of Gracie's Neuropsychology testing. I know its no surprise to anyone to hear that Gracie is super smart. However, they did see some small issues with her attention span, and also with some minor anxiety, which you'll read about in a few minutes. There is nothing abnormal about these issues in Hurler kids... It's pretty common
One other thing though- Gracie was not able to see her orthopedic doc this week. This is concerning because he is the guy who will tell us when we will need to get hip surgery. Now for those of you who are unfamiliar, most Hurler kids require hip surgery while they are young in order to correct a malformation of the hip joints. This surgery is very difficult and of course, it is very hard on the kids. Dr. Walker has continually told us year after year that we will need to have this surgery "in a year or 2". Last year he predicted that she would need it probably at age 7. I am hoping that after he reviews this year's X-rays he will not tell us that we need it sooner. Please pray that Gracie's hips remain stable for the next "year or 2" again. I'd really like for her to be able to understand the surgery when she has it. And I'd also like to be more settled into my new job before this all goes down.
On to Friday! Friday's MRI was a total bust! For some reason, Gracie just flat-out refused to do it. After her 1st MRI, this took us by complete surprise. It was unfortunate, especially since it was specifically for a research study, but we just could not talk or bribe or threaten her into doing it. She was more anxious than I have seen her in a long time and it made me a little worried. I will definitely be watching her anxiety level more.
So there are all of our appointments for the week. Mostly good news. I can handle that. Your continued prayers are of course appreciated. Please keep it up. We know that they're working for sure!
God bless!
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