Amanda Elizabeth’s Story

Site created on November 28, 2006

Welcome!



Amanda's story started before she arrived with a prenatal diagnosis of a severe congenital heart defect.   We traveled up as a family to Philadelphia in December of 2006 and January 2007 she arrived, had open heart surgery very soon after and did very well.

Fast forward and she's been living a pretty normal routine life with no restrictions or medications.  Another surgery would be needed, but not until she was a teen or adult as we understood it.
We moved to a new normal of cardiology issues being an annual appointment that we got a bit anxious about right before the appointment, and then we jumped back into life for Amanda with school, friends and sports, girls scouts and anything to do with cats.

Things changed with cardiology appointment in August 2013.  We were told that the enlargement of the right side of her heart was progressing faster than was expected and that she might need surgery to replace her pulmonary valve much sooner than we had all hoped.  

For the past few years our new normal included cardiac MRI's with waits to hear if the changes to her heart warranted surgery or another year of waiting.  

This year in September we were told it was time to plan Amanda's surgery.    I will update her journal with where we are at now .  We welcome comments and sharing of her story.

Thank you for taking the time to share Amanda's journey with us.  






Newest Update

October 12, 2021

Journal entry by Maggie Duncan —

FB memories sometime catch me by surprise.

Lots going on this week, and I had managed to forget that 3 years ago yesterday we were sitting in the hospital waiting for the surgical team to give us updates on Amanda's Pulmonary Valve Replacement Surgery.

It's good to be at a place that we all forget and are focused on the now and doing.

So the newest photo is Amanda at Renaissance Fair paying her fee to try the strong man challenge. 
She spent the day with a friend exploring.
The day before she's been at a marching band competition and playing hard as part of the baritone section.

It's along way away from a hospital bed in Levine's three

years ago.

#Everydayisagift






Read More of the journal titled "October 12, 2021"
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