Friday, February 21, 2014

Update #2

Another brief update: I got my genetic test results back and I AM a carrier. I was surprised, and also surprised by how much it bothered me. Once we had Ronan's results back I felt like I didn't even care what mine were, mostly I just wanted to know Ronan was O.K. Maybe it was just the way the genetic counselor said it over the phone, as if she were delivering really bad news. Which I guess it would be, if we didn't already know that one of our kids had DMD and the other didn't. At this point, I didn't think I cared about myself. Unfortunately, it turns out that no matter how rational a person is, it is hard not to feel some irrational responsibility and guilt in a case like this. My son has a fatal disease and I gave it to him. I didn't know, it isn't my fault, no one could have predicted it. It's very strange to think I have been walking around with this time bomb my whole life and never knew.

Monday, February 10, 2014

Ronan has all of his exons :)

Just a quick update, since I know some of you read this blog but not my Facebook posts. We found out on Thursday that Ronan does NOT have DMD. His creatine kinase (CK) levels are well within the normal range. In DMD it would definitely be elevated, so we don't need to check his DNA, we know he does not have the mutation. We won't know for another couple weeks if I am a carrier, since we have to wait for the results of genetic testing. Stay tuned for a new blog post, but for now consider yourselves updated.