Aidan has been followed by a wonderful geneticist. Through all of Aidan’s (and our) genetic testing we’ve discovered that Aidan and I have extra genetic material on our third chromosome. I’m pretty sure that’s where the good looks and big brains are stored.
We see the geneticist every year and she frequently has new tests to run. We’ve gotten accustomed to Aidan’s lack of a diagnosis. We set goals for him; he works hard; we’ve settled into the unknown quite well. Why rock the boat with a name?
At this point, I don’t believe having a name for Aidan’s issues would change how we treat him (tons of therapy, special education, high expectations) nor do I believe it would change his prognosis. He’s shown consistent improvement over the years and we expect that to continue.
But could it change the playing field for other children? Medicine is always changing. Doctors are always learning. I would love to be part of the solution for another child. Could information about Aidan’s life close that window of lost time for someone else, give them a heads up on their healing and learning? Give it a name; fund some research; don’t let precious time get away.
So this is how we decide each move. I’m game for blood tests and one stab is all you get. Our neurologist recently gave us the option of having an MRI to diagnose a possible white matter disease in his brain. We could get a diagnosis for Aidan’s big picture issues. The name would do nothing for Aidan, there would be no treatment option, and he would have to go under general anesthesia. That’s too much to pay for no direct benefit to my son.
I take the decisions how they come, relaxing into the unknown.