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There are currently 15 messages.
There have been 848 visits since 2008-02-01
This page was last accessed on 2012-02-10

Name:

Janice Ross

Comments:
Your entry is so uplifting. My greatgrandaughter is awaiting a heart transplant at Loma Linda Hsp. She is 7 1/2 weeks old, cannot have the surgical proceedure that we planned on prior to birth. Her name is Scarlet Griffith. growingamonkey.blogspot.com is her parents website. Please contact them. They are young and could use help with the process.

Name:

Jenna

Comments:
Hi
My name is Jenna and I came across your site. U have an amazing and inspiring site. My dad has congestive heart failure. I have a rare life threatening disease
miraclechamp.webs.com

Name:

callum start

Comments:
thank you for your time in making this site very helpfull .callum is now 4 and 3 months and is awaiting hes stage 3.due anytime all the best to you and your great newes thanks

Name:

Nicola

Comments:
I just want to say THANK YOU!, i am 28 weeks pregnant and found out my baby has a very complicated heart problem and will probably develop into hlhs before he his born. During my frantic searching to find out more information i stumbled across your page (thank god), after seeing your page and how well and how adorable jack is it has filled me with confidence and hope, although we are still coming to terms with this, your page has been so helpful and i cant thank you enough! thank you, Nicola x

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.

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