Well, after getting Soren's blood drawn back in December and waiting these many months for the results, we got a call today saying that Soren DOES NOT have the CDKL5/STK9 gene mutation.
What does this mean? Well, as far as his treatment goes, absolutely nothing. Even if he did have this mutation, we wouldn't be changing anything, it would just answer the question of why Soren has seizures.
Chances are, it's some other gene mutation that they haven't discovered yet. So now we wait around and call the geneticist back in a year to see if they've made any new discoveries.
We're perfectly happy with these results. Always nice to find out your kid doesn't have something with a lousy prognosis. But, in a way we were hoping to have an answer. Then we'd be able to test Moira so she could make an informed choice when having children. But we have many years before that's gonna happen!!!!
And we're bummed we don't get to come out with our new T-shirt line. We were going to make Soren a shirt that said MUTANT: CDKL5. Gotta have a sense of humor about these things. Maybe his actual gene mutation will have an even cooler name.