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There are currently 11 messages.
There have been 255 visits since 2008-02-01
This page was last accessed on 2010-03-14

Name:

jill steenson

Comments:
I want to thank you for your nice blog. I lost my five month old son to Hypoplastic Left Heart Syndrome. I like reading stories of the children who beat the odds. We spent seven weeks at Primary Children's. It it a strange thought that as my life goes on without my son, other people are receiving this life changing news, and there is a new crop of shellshocked families in the waiting room at the picu. I hope Jack continues to improve.
Jill Steenson

Name:

Jerry Dakota Mccoy

Comments:
My name is Dakota and i am * years old...I have Hypoplastic left heart too...Hope you are doing good

Name:

Ann

Comments:
My grandson (Alexander Douglas Stewart) was born with HLHS on March 17, 2008. His Mitral had too much regurge and he was not a candidate for the 3 stage surgeries.
He had the hybrid procedure to buy him time to wait for a donor heart. He recieved the heart on July 11, 2008, just shy of turning 4 months.
He is doing awesome.
I found the pictorials on the three stages very interesting. Thanks for sharing.
I will keep you, Jack's parents and Handsome Jack in my thoughts and prayers.
Loves,
Grandma Ann (Alexander Douglas Stewart-HLHS-Transplant-2008)

Name:

Ellen Vinson

Comments:
We have just learned that a grandbaby due in April has HLHS.
Where did you have the surgery and are there many limitations on
Jack? Were the operations terribly painful and did he stay in the
hospital for a long time?
ev

Name:

Alex

Comments:
I have HLHS too!!! I am 17 months olds and almost walking... Rock on Heart buddies and Heart Hunnies!!!

Name:

Gary

Comments:
My nephew was born with HLHS the summer of 1992. He has required more surgery than just the 3 the "three stage" but he has come through it all and is still going. He will probably never be able to participate in strenuous physical activities, but he's otherwise quite normal. More than once a surgeon came out during one of his surgeries to tell his parents that they didn't think he would make it, but somehow he always has. Every year his prospects for a fairly normal lifespan improve as medical techniques advance. For those parents who worry about "quality of life", even though my nephew has some restrictons on what he can do (he doesn't do sports) he's probably more physically active than a lot of x-box 360 addicts sitting on the couches in a lot of homes.

Message Number: 5 - Wednesday, June 25, 2008 16:30:30 PDT
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Message Number: 4 - Friday, June 20, 2008 14:37:20 PDT
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Name:

Holly

Comments:
Jack's "real" nurse:) Jk.

Message Number: 2 - Thursday, April 10, 2008 12:58:55 PDT
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