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CZ_TinyTemplateE

I wear red for Logan.

The Month of February is Congenital Heart Disease Awareness Month. Today had me thinking about the last 3 years and everything we have been thru. Honestly, I don’t know how I got thru it. From getting the devastating diagnosis that kept getting worse every single time we saw a new doctor, to having to rock him in […]

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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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0112 011

Big Week For Logan

So Logan had a huge developmental week! Just in one week, Logan started saying HI, clapping, and sitting up unsupported!  It is fantastic to see him developing and he is so ecstatic to be able to do these things. He also tried a few new foods which is encouraging.  He typically only takes a few […]

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echo 040

Fontan Talk….

So.  The echo looked good from what you can see on an echo…ventricular function looked good, his ‘sutureless repair’ (for his pulmonary vein stenosis) was wide open with no obvious narrowing, and his Glenn was working well.  Things that we don’t know right now are the severity of his collateral growth and what his pressures […]

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11.11 017

No Echo….

SO.  Burnt out, fried, and extremely nervous Mom got the appt. dates wrong.  UGH………. Logan’s app was on Tues., not on Thurs. so I had missed it.  Did the heart center call me? NO.  argggg… Anyway, echo is rescheduled for Mon.  So I get to worry about this all weekend now, great! I have good […]

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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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