Saturday, August 3, 2013

Lily's Fontan Story...

With Raygen's 3rd surgery, the Fontan coming sometime in the near future (hopefully not till next summer)it is always inspiring to read stories of other children's Fontans.  It gives me great examples of what I should look for when it's Raygen's time and it in some ways prepares me for the dreaded surgery.  Right now we live our life with the Fontan always in the back our minds and it is a uneasy feeling.  I am loving our life right now and I always get a stomach ache when I think we are not done, Raygen isn't done yet.  I know that the Fontan is suppose to be the easiest surgery out of the 3, but heart surgery is heart surgery and there are never any guarantees.  So when I read this story it gave me hope and hope is all we can ask for. 

Read Lily's story. 

A quote from Lily's mom that I love: "We are only given one life, and I want my daughter to have a life that is filled with wonderful, positive memories.  I want her to not define herself as a “heart kid”, but as a kid with amazing heart!!"

http://www.sisters-by-heart.org/2013/07/fontan-series-lilys-story.html