Friday, January 23, 2009

Genetic Testing

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...

Thursday, January 15, 2009


On Tuesday, we recieved a call from the University of Indiana, which tested Evan's blood for genetic abnormalities. Dr. Flockhart explained to us that Evan's liver was lacking the proper enzymes that would normally allow him to "break down" chemicals in the body. Evan was given cough medicine the night he died, therefore contributing to his death. This is genetic. The testing also revealed another genetic mutation that they were not able to identify. DNA has two components. One component was perfect and the other showed severe genetic mutations. Further testing is going to be done to determine what the other mutations are. Only one has been confirmed. Nathan and I are going to Indiana next Friday to be tested to determine what side these mutations come from. My biggest fear now is that Noah may have the same condition.

Right now I am still trying to process all of this information. I feel hugely responsible and guilty for giving him the medicine. I am really still so numb and very much overwhelmed. Everyone can say that giving medicine is what every mother does, but that is easy to say when it is not your child that died.

On another note, there has been much debate over the use of cough and cold medicines for children. What they don't tell you is the statistics of death among children, mine now being one of them.

Saturday, January 3, 2009

My Awesome Family!

This is how incredibly awesome my family is! Instead of having a traditional Christmas party, they decided to meet at Build A Bear Workshop on December 21st. They all made bears in honor of Evan. The bears were then distributed to long-term patients at Cardinal Glennon Children's Hospital. How awesome is that??? In all, 29 bears were donated. Because of Evan and my wonderful family, 29 sick children had a smile on their face! This is the best Christmas present I could have gotten this year. Nathan and I were so honored that my family wanted to spend Christmas this way. A BIG thanks from the bottom of my heart...

Another great thing about the day was getting to spend it with Evan's cousin Abbie. The two were in the same kindergarten class together last year, and spent alot of time together. Abbie was certainly a special part of Evan's little life. I love you Abbie!!
"While we try and teach our children all about life, our children teach us what life is all about."