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

27-09-10

I got home on Thursday and you were sleeping, so I decided to make a photo wall in the lounge, it looks lovely, but everytime daddy walks into the lounge and looks at all your photos he becomes very emotional, which you know is not like daddy, he likes to keep his emotions in check. The girls got home on Sunday and they just love the photos too !!

We had a good public holiday, spent the day with family at your aunty's house and she just kept you entertained most of the day. By the time we got home we were all pooped - it was a long day. Mommy put you down for the night but you didnt sleep well, kept coughing most of the night. I was not taking any chances, took you to the doc and you seemed to have caught some kind of virus - which in your case is very dangerous. So yet again mommy has to do what you hate most, nebulise you. Fortunately its only for a week this time and not 3 weeks, so I think we caught it at beginning stages. The doc says we can't put you on antibiotics cause you have just come of a course of them. But in any event, you were much better last night. I put you down after your feed and you were quite happy to be in your cot, but when I kissed you goodnight, you decided no more I want to be in bed with mommy and daddy - and yes you got your way - and only with the greatest of love and pleasure !!

Daddy and I decided we needed a day out yesterday and went shopping, yet again you just loved all the different things to see, and again it never seizes to amaze me how complete stranges just want to touch and cuddle you - it is as though you have this light shining through you that everyone can see and wants to be a part of.

God willing my little angel - your light will continue to shine. We love you so much !!
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