The geneticists and researchers in London called our doctors last week to tell us the results of the blood work that we sent off to them. Lila does indeed have the mutation that they believe is responsible for Vici Syndrome. It is our first abnormality in all of the genetic work up that we have done. They also found in our blood where Quinn and I are carriers. It all will become much more official once they publish, but as our neurologist told me this just makes him 99.9 percent sure its Vici instead of 99 percent.
This is so bittersweet for me. I guess its the end of our searching, and it does give us hope that future children are possible through IFV and genetic screening yet it means that my sweet little girl will not be with us for very long. I truly can't imagine being without her. The only silver lining for Lila is (and I wont even try to explain because frankly I really don't even understand it myself) they can tell, by the type of mutation, that she is on the less severe side of Vici. Hopefully this means we will have her longer than most and that she will accomplish more than most Vici children.