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.

Wednesday, April 20, 2011

Happy times

Hey little sweet pea - the last few days have been really great. We have been able to manage the constipation compaction problem - what a mouthful - and you have been feeling so much better. Been heaving a little but not as much as the weekend. We have had four nights of bliss and you sleeping through but I guess now you have decided mom and dad have had enough sleep, lets shake things up a little :)  okay it hasnt been so bad, you have been a little on the niggly side but nothing major, I think just cause mommy wasnt feeling so great it felt worse than what it was.

In any event, you have been smiling so much more lately - and then when daddy gets hold of you, lots of giggles, some of them delayed reactions but nevertheless a wonderful sound.

From all the operations, you seem to have lost quite a bit of muscle tone but you are slowly building it up again. When you feel like it you try stand a little (with mommies help of course) and you hold your head up for a little longer each day - something you were able to do for quite a while before the operations.

You have also put on some weight, almost 600grams and now all of a sudden your 0-3 months outfits are looking a bit too snug - so now we have got you in the 3-6 months outfits which kind of seem a little bit too big - sigh ....... - you will grow into them ..... eventually :)

You were just too cute the other night - full of energy and trying to mimic mommies expressions. I was trying to make and O sound and showing you the shape of my mouth you tried so hard, eventually you went squint but managed to get the O shape going - just too gorgeous for words. Nevertheless your sisters thought you were absolutely histerical - such a little character you are.

So we are getting ready for your birthday party and have decided on a Mickey Mouse Pirate theme, -  a) Mickey Mouse because of your Mic-Key and b) Pirate because your one eye is smaller than your other - Kudos to Jacqueline, Mommy and Tia - YAY !!! Cant wait. We never thought we would see the day, but here we are and it is so wonderful and exciting, and going to be so memorable.

Missing you much littke munchkin
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