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

Whooooo hooooo - such a relief

Hello big (little) boy - Finally, slowly but surely you are getting back to yourself. Talking away and mr grumpy pants when you dont get your way !!!! But we still love you anyway - even when you are a grumpy pants :) Daddy took you to the surgeon today and he is happy with the way things are healing - WHICH MEANS - we wont have to close the hole and go back to the nasal tube - what a relief. I have been sitting on edge all day - even though all looked good (well to us anyway)and hoping that your wounds are healing the way they should be. So 5 more days and you can have a proper bath - in the bath - and not just top and tailed - I think that is the reason you have been a little on the grumpy side, after all you just love your bath and putting your head back in the water and just having a good old soak. Not too long now my little munchkin.
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