Zach

[zachgram]

Zach was born on Feb. 7, 2005, at 28 weeks gestation. He was a very sick baby from the beginning. The doctors had no idea why they couldn't get him off the ventilator when his due date approached. They also knew that something was wrong with his muscles. A genetic test was done and it was learned that he has congenital myotonic muscular dystrophy. His lungs and airway were fine, but the muscles were too weak to operate the lungs well enough. Because of Zach's diagnosis we also learned that Zach's mother and grandfather also have milder forms of the disease.

He, of course, has many physical delays due to the muscular dystrophy, but he has been entirely off of oxygen for about a year and as of last week had weaned off the ventilator (except during illness). He is fed by g-tube exclusively.

We live in Augusta, Kansas. I am Zach's maternal grandmother.

Carol
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Dodge 50 Series (http://www.dodge-wiki.com/wiki/Dodge_50_Series)

[zachgram]

How do you edit the topic title? I put Zach's name. Everyone else is putting their own. I was gonna change it, but I couldn't figure out how.
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DT175 (http://www.cyclechaos.com/wiki/Yamaha_DT175)

[cbissell]

No way to change the title Zach j/k:;):
Maybe with the new software once the board is update. We'll see.

[zachgram]

Oh well. I like to be different--I really do! http://www.tracheostomy.com/iB_html/non-cgi/emoticons/upsidedown.gif
But, let's make it official. I'm CAROL, Zach's and Devon's grandma, and Julie, Amy, and Eric's mom. It's most important that you know Zach anyway. He's a very special miracle.
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[twintotwin]

Hi Carol- I've always wanted to see Zach...can you enlarge your cute avatar? It looks like there's no vent in that pic...yay!

Zach and I are only 3 days apart birthday-wise, which means he's a lucky Aquarian!

~Kerry

[zachgram]

Sorry, Kerry, I missed your question. I'll sincerely try to enlarge it sometime when I've got more time than I do right now. It's a major big deal for my inept self any time pictures and computers get together, but I promise to try.

And, yes, it is vent free. We were actually vent free for 24 hours last month and then he got sick. Now he's back to the vent at night, but we hope in about five weeks to get rid of the thing for good.
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[zachgram]

Here goes:

http://i17.photobucket.com/albums/b98/ccourtwright/000_0031.jpg
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[Nate's Mom]

What a great picture of Zach!! Was that taken at the zoo? We haven't taken Nate to the zoo since he was an infant. I hoped to go over spring break, but it looks like lots of rain this week:(

[zachgram]

very perceptive of you, Miss Marcie. Yes, the one and only time we've taken him--have to do it again before it gets too hot.
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[Whitney]

I THOUGHT that was the zoo!! I was thinking to myself, where is that.... I have not been to that zoo in YEARS. I LOVE the pic Carol. I think that is one of the first pics of Zach I have ever seen. He looks great :)

[Jacob's Mom]

Zach is even cuter than I thought! Thanks for sharing that pic, Carol.

[cariaad]

Oh man, i only get a red X and no picture! Deb