Monday, August 15, 2011


Today, my friend Stef is hosting a blog linking event on her personal blog.  It's called "Every Heart has a Story" and, if you've been around here a while, you may remember the post I wrote for it last year.

(It's right here if you've never read it, or if you just want to read it again.  It's the best place to start for those of you who may be new to our blog! You can also find the link for it on the left-hand right-hand side of the blog by clicking on "About Us" in the "Learn More" section.)

It's kind of crazy reading back through all of that and remembering what a hellacious time we experienced during Ethan's first few months of life.  Some of it still seems like a really bad dream, but the literal and figurative scars on all of our hearts proves that's just not so.

It did happen.  My three-day old baby did undergo an eight hour open heart surgery.  He did require eleven minutes of CPR to keep him here with us.  He was G-tube dependent for eighteen months of his life, never eating more than a few bites of food a day.

The boy he is today makes it easy to forget the fragile baby he was two years ago.  Today (literally, today) he is a three foot tall, 28 pound toddler who still has every ounce of that fighting spirit in him (just ask the guy who had to take his blood).

Today he charmed the staff in the PCICU, and provided hope to a family in the waiting room.

Today he threw a perfectly-formed two-year old temper tantrum when I told him he couldn't go play in the construction zone.

Today I was able to dismantle all of our geneticist's concerns with my answers to his developmental questions.

The story I told last year is still our story today, but that sick little baby is transforming into the boy I prayed I would get the opportunity to know.

It's happening right before my eyes and, today, I don't take a single second of that for granted.


So, about that geneticist, blood draw thing.  I took Ethan to Duke this morning for a yearly follow-up visit with Dr. J, the geneticist who was assigned to Ethan's case at birth.  At this point, all genetic testing has come back negative.  Dr. J is still leaning towards a diagnosis of Holt-Oram, but there just isn't enough present-day research to confirm it.  In the meantime, he is going to test for one other genetic disorder (enter: screaming, sweaty, had-to-call-for-back-up blood draw), and we should have those results in four-to-six weeks.

As usual, if this test is also negative, we will stop there and know that Ethan has been tested for every possible genetic disorder that could be linked to his conditions.  He will continue with yearly follow-ups and will only be tested when new developments are made in the genetic world (additional Holt-Oram types emerge, discoveries of additional disorders, etc).  If positive, Jeramie and I will be tested and we'll go from there.

The probability of this test coming back positive is pretty low, but Dr. J feels like it's worth looking into.  So, look into it we will.


And, with that, that is where we are today.  

There are two ways to live: you can live as if nothing is a miracle, or you can live as if everything is a miracle.
-Albert Einstein

A miracle, indeed.


Stefenie said...

Thanks for joining my blog linking event today Joye!

It is amazing to see how much Ethan has grown in this past year. What a wonderful and very happy little boy he has grown to be! {{{HUG}}}

Will be praying for good news on the genetics testing.

Anonymous said...

Ethan is truly a miracle. I don't allow myself go back to the first few months of his life very often because it scares me all over again, but I will never...never forget what he went through.

I love spending time with him and will make every effort to spend as much time with him as I can, while I am still young enough to keep up with him!

He is an amazing 2
year old toddler with a very special compasionate heart.

He is so out going. He loves people, all people.

He made some friends at Uncle Nick's football game. He met a little boy on the track. They ran and ran together. Ethan laughed so hard with excitement that I have never seen from him before.

So the next time you go to Dr. I. and he says his heart rate was up on August 12th, it is because he was so pumped up with energy and laughter.

Thanks for sharing the news and the new pictures, I love them all, but the one of him on the horse makes me smile from ear to ear.

Thanks for this blog, I love to see the updates.

Love always,
Grandma A.

Tara said...

Love your post...have tears in my eyes...He is such a true miracle!

Praying for good test results =)

Jenn said...

My goodness, he is getting so big. I love the picture of him standing with his hands in his pockets. He is such a big boy now. Thanks for the updates, and I will be praying for the testing.

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