Caleb's Journey

Saturday, November 12, 2011

I got his in the mail today from Caleb's buddy, Lane (35 months old, also has trisomy 18). I LOVE IT. The Caleb Bear is the same weight as when Caleb was born... 6lbs 5ozs. It came with a cape and blanket. I cried..it was like snuggling with Caleb again. I'm going to snuggle with him tonight. He is in the crib right now. Who knows I may just jump into the crib with him!!! The bear was made by another special mommy Katie Weaver. Thank you so much Alisha and Katie .....I love you

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Definition of Trisomy 18 (Edward's Syndrome)

Edwards Syndrome : Edwards Syndrome (Trisomy 18) is a chromosomal abnormality where there is an extra chromosome present in every cell of the body. This is an example of where “the more the merrier” is not true. This extra chromosome means that every cell has extra information encoded into it. The extra information causes confusion in the way that the cells are formed and results in the potential malformation of all of the body systems. Sadly, this condition is considered "not compatible with life". Just like with Down's Syndrome (Trisomy 21), there is a wide range of how this condition will play out (what the doctor's will refer to as your child's phenotype). Unfortunately because there is more information encoded on the 18th chromosome, the severity of this condition is greater than that of Down's Syndrome. Current studies show that while 1:1500 children will be diagnosed prenatally with trisomy 18, only half that number (or 1:3000) will be born alive at full term. Of those who survive to birth, only half will make it to two months of age, and only 10% will survive to their first birthday. Children who live can be an important part of their family and community, but are profoundly developmentally delayed.