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.

Thursday, April 7, 2011

15-11 - 2010

Besides the little niggles Lior had a great weekend. He went to his first birthday party and just cried all the way through - I think the wind was a little too much - when we decided to go home, from the minute I put him in the car he was a different child - smiling and talking and for the first time played with a rattle - the first time he has managed to hold on to one !!! I know you may be thinking so what - but that is a huge achievement for my little boy !!! Lior is taking huge strides everyday, and doing things the doctors said he would never do, all be it a lot later than most babies !!

I just hope and pray that I can keep him from getting ill with this weather constantly changing and I just cant keep him covered at night, even if I put a little sheet on him he kicks it off and if I put warm clothes on him he just sweats terribly and I dont want him to be "wet" during the night - just a no win situation at the moment.... what to do ......
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