A few weeks ago we went to Little Rock to meet with the genetisis. We learned more about her Noonan Sydrome. Turns out she doesnt have Noonan Sydrome she has Noonan like sydrome. Basically her one little messed up chromosome is different than what is seen in more Noonan Syndrome kids/babys. Hers is a Lukemia Noonan Sydrome. The oldest child with it (that has been known) is 12. Many have had lukemia, many have not.
We still dont know where it came from. We will prob do testing on me and TJ later in life (its a pretty costly test) to see if it is in our genes or if its a random thing.
Back to her, she has a high chance of getting Lukemia than your average kid. How high of a percentage, we dont know just yet. Down sydrome kids have a 1.??% where normal kids are like .1% (something like that). I asked a million questions and the only thing she could tell me was its in testing. They dont know really anything besides which chromosome is messed up and she has Noonan like sydrome. It is scary. They can do blood test to check her white blood count but there isnt a need Lukemia grows VERRRRYYYYY fast. We just have to watch for the signs and go in RIGHT then! Since leaving childrens in may she has been a healthy baby girl!