A few weeks ago we had a blood test done on Zuri for Williams Syndrome. We met with a geneticist up at Primary Childrens hospital up in Salt Lake. Williams is a rare genetic disorder that most closely resembles Downs Syndrome (from my research)--but almost opposite. A child with Downs Syndrome, when told to draw a bicycle, will draw a crude outline of a bike. A child with Williams Syndrome, when told to draw a picture of a bicycle, will draw the frame, the chain extended beyond the tires, pedals attached to nothing, and a person under the bike. The parts are all there but not connected correctly.
When I heard about Williams Syndrome, I thought it would be like all the other tests that they have wanted to do, I would do a little research and be able to completely dismiss it. The more I learned, though, the more I began to see similarities in Zuri. Now, to be fair, the geneticist said that he thought Zuri had a 5% probability of having Williams, he was even borderline on testing for it. Anyhow, after learning more about the disorder I became very worried that she might actually have it. I went through a couple of dark days.
J, bless his heart, was finally able to convince me of how silly I was being, and how she really didn't fit the mold of Williams Syndrome. It was a very interesting time because I am not prone to worrying like that, but I guess when it comes to your child, sometimes you can surprise yourself. I am not necessarily a sunshine-and-daisies-all-the-time type of person, but I like to think that I am more optimistic than not.
Well, all my worry was for naught. The Doctor called us on Tuesday and told us that Zuri "is normal." Meaning, she doesn't have Williams. Hip-hip hooray! They did find indicators of low levels of two of the hormones that regulate growth, so we will be visiting an Endocrinologist at the end of April (earliest appointment). We also have a test with the GI doctor at the beginning of April.
We have debated whether or not to tell people about what is going on--in fact, we have kept most of the testing very quiet. It isn't that we don't want people to know, it is more that it is just such a personal thing, and we don't want anyone to treat Zuri any differently. She is small, yes, but she is normal. We have followed her pediatrician's advice to the 'T.' He is not overly concerned because she is growing, she has stayed fairly consistent along the charts. There have been a couple of times when she has jumped ahead and then leveled out again, but she has never dipped below her birth percentages. We are doing the testing now to basically dot the I's and cross the T's (as he puts it), so that if there is something that we can catch it early.
I was also very small. I barely weighed 30 pounds going into kindergarten, and I have turned out just fine. Now that I am a parent (and going through the exasperating time of trying to get Zuri to eat), I hear a constant stream of "that's how you were," "you ate like a bird," and so on. So, do I think anything is wrong with Zuri? Again, I will reiterate, no. She is small, that's all; just like I was.
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