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One year post-Fontan!
posted by Mom on May 24, 2009 in the following categories: Life with Sammy

sammy, swingingSammy is now one year post-Fontan!

The further we get away from his surgeries, the more I can look back at just how difficult and amazing the past three years have been. When you're in the throes of it, it is emotional and scary and hard, but when you can look back on it, it's truly impossible to acknowledge the hugeness of it all.

Thursday was one year. I climbed up into his little bunkbed and snuggled him while he still slept, amazed and feeling so blessed. He got up, had breakfast and went to preschool like a typical 3 year old. We picked him up and took him out for ice cream to celebrate, and then he was off for music lessons - drums. Sure, sometimes (not always!) he tires a little easier and has perpetual blueberry lips, but to realize that he's been through 3 open heart surgeries and is just about as normal as any other kid - it's incredible.

The strange thing? I felt all day long that May 21, the day of his Fontan, was really his birthday. I know his real birthday is in February, but it felt like he was truly given life on May 21. And in a way, he was. And we will forever be grateful for that.

(While you're here, would you mind donating to our walk in support of Children's Hospital Boston? We cannot begin to express our gratitude for all they have done for Sammy and countless other children. Thanks so much!)

Comments (3)

Happy Fontaniversary!!!

Posted by: Tricia at May 24, 2009 11:42 PM

Me too. I felt the same thing with Elijah's 1-yr-anniv. this year.

I can't believe it has been a year already! Wow! It seems like just a few months ago that I was reading about Sammy's surgery and recovery.

Happy belated heart day all of you! xo

Posted by: Megan at June 4, 2009 4:20 PM

I just found out at our 20-week appointment on Tuesday that our son has HLHS and VSD. We see a pediatric cardiologist on Monday. The past few days have been the most difficult of my entire life, with emotions ranging from both ends of the spectrum. My husband and I are still reeling with the information, enjoying time with our 2 year old daughter, and are very anxious and scared about our little boy's future.

I found your blog today and read through the entire thing in a matter of hours. It certainly sounds like there are a LOT of ups and downs, and it still seems so very scary to me. But you and Sammy have given me a hope I didn't know I could have after receiving this devastating diagnosis. My hope and prayer is that God will keep our son in His hands and that he'll make it through the 3 surgeries with flying colors.

We live in South Carolina, and for the past few days have been researching the best children's hospitals in the US. Boston keeps coming up in our search. It sounds like you received excellent care there, but it's so scary to think of uprooting our little family all the way to Boston for who-knows-how-many months.

Anyway, I just want to say congratulations on making it through this difficult journey and also thank you for providing me with a glimmer of hope.

Posted by: mom2lo at June 19, 2009 4:43 PM

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