More Good News

Today we met with Eliza's Genetics Dr. to go over all the test results that she was tested for (These were all the metabolic tests that we were hoping she would test negative). We are so happy to know for sure that Eliza continues to be absolutely perfect, even in the metabolic since! Her Dr was thrilled to see Liza doing so well. Eliza was even awake at the time so the Dr was able to see her putting up a fight during her physical exam. There is another blood panel test that she would like to run that test Liza's actual DNA. These tests will check the spelling of her DNA to see if there is a mistake anywhere and will most likely give us an actual answer. The answer we are hoping for is Benign Neonatal Convulsions/ Seizures... This is the absolute best case scenario and so far Jason and I are pretty convinced that this is what she has (she is an exact description of the definition given online). The test is pretty expensive, so at this point the Dr is going to try to get insurance authorization (which takes about 6 weeks). We have decided that we want the test done regardless of insurance, but would like to at least try to get authorization. Once the blood is collected it is sent to a lab in Chicago so I'm sure that will be another few weeks to get the results on top of the 6 weeks to get authorization. We will meet with the Dr again in 6 months to hear those results. Exciting news today, and we are so happy!

I have to rant and rave again about the top notch service that is provided by Valley Children's Hospital! I am so grateful Jason is a part of this amazing place. We have encountered nothing but the best care by the best physicians and other health care workers. I have fallen in love with all the nurses (except one nurse in the PICU) and doctors that have been a part of Eliza's care. I truly feel like her Neurologist and her Geneticist care for Eliza. She is not just another patient to them, she is a cute little baby with red hair and blue eyes. And as they saw progress in Eliza's health, you could see victory in their expressions. They are so happy she is doing well. The Geneticist complemented me today and I had to fight back tears. She applauded my strength in the hospital, she told me that I did so well to hold it together, that I was calm and collected, and that I asked all the right "scientific" questions (haha). That meant so much to me (I'm not sure why)! I told her that I had my moments of complete break down, to which she responded that I was able to hold it together in the times that needed it. I love these people and I just feel like I want to be their friend and have them over for dinner and games! Haha. I'm a nut, but it's true. And I couldn't even care less about some of the charges coming through to our insurance that are as much as a house cost, because you just can't put a price on the care that Eliza has received and she is soooooo worth it! That said...I am so grateful for insurance and that we won't have to sell our house and live on the street! ;)