Letters to Lior

Trsiomy 18


There are 23 pairs of human chromosomes. In Trisomy 18 (Edwards syndrome), there is an extra chromosome with the 18th pair. Like Trisomy 21 (Down syndrome), Trisomy 18 affects all systems of the body and causes distinct facial features. Trisomy 18 occurs in 1 in 3,000 live births.It is three times more common in girls than boys. Unfortunately, most babies with Trisomy 18 die before birth, so the actual incidence of the disorder may be higher.Infants who survive, experience serious defects and commonly live for short periods of time. Trisomy 18 affects individuals of all ethnic backgrounds. Trisomy 18 severely affects all organ systems of the body.The majority of children who are born with Edward's syndrome do not live past their first year of life. Their average lifespan for half of the children born with this syndrome is less than two months; approximately ninety to ninety-five percent of these children die prior to their first birthday. The five to ten-percent of children who do survive their first year experience severe developmental disabilities. Children who live past their first year require walking support and their ability to learn is limited. Their verbal communication abilities are limited as well, although they are able to respond to comforting and have the ability to learn to smile, recognize and interact with caregivers and others. They can acquire skills such as self-feeding and rolling over.

Friday, August 26, 2011

YAY home home home !!!!

Yipee my little nunu, tomorrow we get to go home !!!!!

The last 5 weeks have been physically, emotionally and mentally exhuasting for all of us. 4 of those 5 weeks we have spent in hospital and to say that it definately has not been pleasant would be an understatement.

The last few days have been good for you. You have been feeling much better and getting back to the normal little shining light that we know. Yesterday we had to have a new mickey put in. With the fact that you have actually grown and lost so much weight in the last three weeks, it wasnt fitting properly and was leaking quite a bit. The rep came to change it for us and whala - although it still leaks a little when you cry - something we will never get away with - it is so much better.

Cant wait to get home and have you in a normal environment and be home with daddy and the girls. It is long overdue and will definately be so much better for all of us.

Keep going strong my baby - we all love you so so much !!!!!

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