Well, we made our trip to Indiana and managed to make it back safely. We got the privilege of meeting Dr. Flockhart, who did Evan's genetic testing, or at least some of it. Due to the results, Dr. Flockhart wanted to test all three of us. (Huge Blessing!) We are primarily focused on Noah and to also determine which side these "gene variants" come from. It was so nice to sit down face to face with someone who has some answers as to how my child died. So, we got to spit in a cup for 30 minutes. Yes! I said spit...It is truly amazing how much you can learn from spit!
During the meeting, Dr. Flockhart elaborated on the scope of the testing. As I stated before, one side of Evan's DNA was normal and the other was faulty. They found two variations in the genetic pattern. One has been identified, and the other, they have NEVER seen before. They are now going to send the DNA off to another lab to be further analyzed. He did recommend completing the Long QT test, so I will be taking that to the coroner's office on Monday. Finally, after 8 months I feel like we are making progress. The rest of the meeting, we were just trying to make sense of all the "medical" lingo doctors oftentimes use. That in itself can be quite exhausting!
As for Noah, he was so great on our little trip. After 31/2 hours in the car, he was eager to get out and start charming the hospital staff, as you all can imagine. The spitting part was also fun for him as well as entertaining for us to watch! We then took him to a HUGE indoor water park. He was more that thrilled! He loves to swim...
Friday Five: Easter Weekend
1 week ago