Compatible With Joy-Trisomy18

In medical literature, babies with Trisomy 18 are "incompatible with life." Our precious son, Aaron, is defying the odds and not only living, but thriving and loving his life. This is an effort to share his joy in his journey. Like the little purple pansy, he is tiny, but strong and brightens his corner of the world. If you'd like to see more pictures and his story from April 2010 to March 2011, go to Http://www.carepages.com/carepages/GiftfromHeaven

Sunday, November 20, 2022

Third Time's the Charm

Waiting on discharge papers and one more talk with ENT.

That's all and we're outta here!

He's not "all better" but close enough.

Still fighting a really nasty ear infection and coming back from e. coli, but we can (probably) handle that at home.

Yay for our own beds tonight!

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What is Trisomy 18?

Trisomy 18, also known as Edwards syndrome, is where a child has three of the 18th chromosome. Most people have two of each chromosome, one from mom and one from dad. In a trisomy, the child gets two of one chromosome from one parent and one from the other. Think tricycle, three.

Imagine if you made a batch of cookies and it called for two cups of sugar. Sugar is good, it's necessary for the cookies to turn out the way you expect them to. But instead, you put in three cups. You then proceed to mix and bake the cookies.

They're not going to be the way you expect, and it's the same way for that extra chromosome. Our bodies don't "read" the code well when there's an extra portion added in, and it causes all kinds of complications.

But just like "typical" children, there is a wide range of abilities and challenges for children with a trisomy. Many of the anomolies occur along the mid-line: the brain, the mouth (cleft lips and palates) the heart, lungs, diaphragm, and kidneys. Some are more severe than others.

Each child is unique, each is special. I like to use the sugar in my analogy because each one child is so sweet. In our home, we say that the 18th chromosome holds the secret to love. Aaron got an extra love chromosome, and he uses it to bless our lives.

Compatible With Joy-Trisomy18

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Sunday, November 20, 2022

Third Time's the Charm

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