Tag Archives: Heterotaxy
5.30 023

Countdown to Surgery- The Fontan

I am a disaster.   We are leaving for Boston this weekend.  I would give anything in the world not to go back.  This life is so very unfair.  I can’t believe he has to go thru this again.  We have decided to rent an apartment in case we are there for a long period of time […]

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5.5 029

Logie in the Pool!

\ Just wanted to share a quick video of Logie playing in his little pool! He has been having so much fun with the nice weather we have been having.All of this exercise has really built him a little appetite too.  He is eating foods that he normally wouldn’t even try, he is loving mashed […]

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Surgery Time

So, I have not updated in a long time. Well, actually about 6 weeks.  I have been spending all of my free time in organizing the new Heterotaxy Network website and forums, and trying to just decompress a little and enjoy the non-surgical months a bit.  I found out that Logan needs to have his […]

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Baby Pierce Update

Just got off the phone with Jessamyn and Pierce is doing astoundingly well.  For a family that was told surgery would most likely be a death sentence things have really turned around since Pierce was in Boston.  Pierce had surgery on Monday afternoon, went in around 1pm and came out around 8pm and has since, […]

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14737697

The Heterotaxy Network

First, I am sorry for my lack of updating this blog lately.  I have been focusing much of my attention on getting our new Heterotaxy Network site up and running.  This is incredibly important to me.  This syndrome is so rare that in order to really understand what is working for them and what isn’t […]

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Because I Said So

The Story of a little boy born with Heterotaxy Syndrome

Immortal Bird Postscript

Doron Weber on Immortal Bird Aftermath

Rachel Amariah

The Story of a little boy born with Heterotaxy Syndrome

BrooklyntheBrave and her journey with Heterotaxy

The Story of a little boy born with Heterotaxy Syndrome

The Story of a little boy born with Heterotaxy Syndrome

When Life Hands You A Broken Heart

The Story of a little boy born with Heterotaxy Syndrome

The Story of a little boy born with Heterotaxy Syndrome

Zoe Fiona-Grace's Story

The Story of a little boy born with Heterotaxy Syndrome

4brokenhearts

A mother of three children with complex heart defects due to Heterotaxy Syndrome awaits the birth of her first grandchild, who also is affected.

The Simmons Family

The Story of a little boy born with Heterotaxy Syndrome

Heterotaxy Syndrome

The Story of a little boy born with Heterotaxy Syndrome

Ava Alexandra Navarrette

The story of a baby girl with Heterotaxy who died only 22 hours after birth.

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