Tuesday, April 19, 2016

Noonan Syndrome & Father Daughter Dance

We have answers! Lucy's genetic testing was returned and the cardiologist was correct. She has Noonan Syndrome. What is Noonan syndrome? (and no its not related to Caddy Shack) It basically explains her heart issues. Here are some good resources to read up on the syndrome.

http://www.teamnoonan.org/

https://www.facebook.com/NoonanSyndromeFoundation/

The Facebook page is great, especially since February was awareness month or something. Lots of stories of other kids and facts. (you need Facebook to be able to view it)

Good news that she seems to have a mild case when it comes to many of the affects of Noonan. Lucy has a mutation in the PTPN11 gene. The worst part of Noonan is usually the heart...well we are well educated and have a plan for that! So really it just explains what everything is and why Lucy has always been just a wee bit different. We now are growing our team of doctors and in the near future will have meetings with Ophthalmologist for eyes, Endocrinologist for growth and Hematologist for potential blood issues. Much more education to come.

But with all the medical events...Lucy is still Lucy and tons of fun.


This weekend was an important weekend for Heidi too. It was Father Daughter Dance! Heidi even had her hair professionally done and everything!



 How sweet and cute is she?


 Lucy realized she can't go in this picture...



Heidi and Chris had a blast at the dance. Too cute! Things are good in the Gonzales household. Lots of prepping for first communion, work, BBQ season coming back and more! Bring on the nice weather!