Archive | December, 2010
11.10-12.10 107

Merry Christmas!

  The festivities were a little much for Logan.  He got very overwhelmed with all the people and noise and thus, he slept thru most of Christmas.  He did make a brief appearance at the dinner table though. He is still only comfortable with Mom or Dad holding him.  He may let someone else hold […]

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logoshadow1

Exciting News….

This has been in the works for a while and it is now getting close to being active.  The primary goal of this website is going to be to connect families all over the globe that have been affected by this illness.  I believe that together we can become more knowledgable about the best treatment […]

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12.10 116

AV Valve Repair update.

For about the last 3 weeks Logan has been fighting an upper respiratory illness.   He has been battling it pretty much since we got home.  It has been disappointing to see him not feeling that well after his Bi Directional Glenn.  We were expecting to see a healthy new baby after this last surgery […]

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Cillia

Heterotaxy Gene Found & Its linked to PCD.

Primary Ciliary Dyskinesia (A Primer)  For those of you that don’t know what PCD is (which I am assuming is 99% of you,  because it’s a rare disease only recently understood) the PCD Foundation has a good explanation here.  PCD is a disorder of the cilia (see above picture) and how this relates to Heterotaxy is very interesting. Again […]

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11.10-12.10 006

Happy Thanksgiving!

Without getting too emotional and sappy, I have to say that we had a lot to be thankful for this year.  It was a very emotional time for our family and I think it is only fitting that Logan sit at the head of the table.  And with this last post I think I am […]

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Boston 1013

Goodbye, hospital.

                Sorry for the delay in posting here. It has been a crazy last week. After a few days home I flew back to Boston and within a few hours of being there I started to feel the beginnings of the stomach flu, so I wasn’t able to […]

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Another Cath…

Sorry I haven’t posted here in a few days. I have been so tired and overwhelmed with everything going on. Logan’s O2 stats continued to be lower than they wanted them to be after the Bi-Directional Glenn shunt. Also, now that they know there was significant blood flow backed up in his upper half of […]

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Dr. Patel Saves the Day!

Sun.- So two big events occurred yesterday that have helped us get Logan on the right path. When we got here yesterday we had another nurse that was completely unwilling to listen to us. She was argumentative and would not listen to a word that I was saying and so I decided at that moment that […]

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Ups and DOWNS.

Sat. Morning Logan is doing so good now. After not being able to get his pain under control we went thru a short phase of him being too stoned. So it has been a balancing act that I think we have under control now. He is drinking from a bottle, about 2oz. at a time […]

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Boston 986

Surgery-Part3 The Ventilator

     Wed. Morning- Just finished rounds this morning. He is doing beautifully. They said things could not have gone anymore perfectly. Heart Rate is perfect, BP is perfect, blood gasses are perfect, lungs are clear, everyone kept telling me it was REALLY AMAZING how well he tolerated all of this. He isn’t all that puffy, […]

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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

Learning From Faith

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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