Caleb's Journey: September 2010

Thursday, September 30, 2010

Graduated From Hospice!!

We cannot believe this day has come. Caleb has graduated from Hospice. Such a miraculous milestone. He has done so well that he is now graduated into the PIC (Partners in Care) program. This is a program between Hospice & CMS. He still is seen periodically by his Hospice team and is given some respite care when needed. But the program is for children who still require care but not under "Hospice" guidelines. We are thrilled beyond words. God has blessed us abundantly.

Sunday, September 12, 2010

Exercising

Caleb has started being a lot more active. He loves to bounce as soon as you pick him up. Sometimes it's hard because he really gets going and I'm afraid to drop him. But he enjoys movin'!!

Monday, September 6, 2010

Sweet Dreams Caleb

I LOVE THINKING THAT CALEB'S ANGEL FRIENDS AND FAMILY ARE ALWAYS WATCHING OVER HIM ESPECIALLY WHILE HE'S SLEEPING. BRINGING HIM BEAUTIFUL DREAMS OF RUNNING, PLAYING AND LAUGHING.

Thursday, September 2, 2010

Caleb's new wheels!!

Caleb got his new Ottobock wheelchair/stroller and seating system. He looks so grown up in it. He is able to sit up with us at the dining table or sit on the floor and watch his brothers play. I can't wait for it to get cooler out so we can go for long walks. He will be able to see the world from a whole new view!!

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.

Caleb's Journey