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.

Tuesday, January 3, 2012

Quiet Christmas and New Year



Hey hey santa's little helper <3 <3 <3

Well Christmas and New year's has come and gone - so quickly. Mommy is back at work and it was really very difficult to leave you this morning, especially since you dont sleep in anymore and were awake and ever so playful by the time I left for the office :-(

We had a quiet Christmas and new year, your sisters were'nt with us so the house was really quiet ..... well I cant say too quiet cause you seem to have become really vocal lately and surely let your opinion on everything be known, even learning to say NO ..... (not that you will ever say it when I want you to) and it is absolutely wonderful



Christmas was a lovely day spent with family, opening prezzies and I could even see the excitement on your face every time we sat with you to open one and this year you even played with your toys. Mommy asked Santa to bring toys that make a noise and things that you can hold onto and boy do you love them. You got a xilophone (however you spell that), a worm that plays music, drums, another toy which when you push the blue button it plays polly put the kettle on and you sway your head from side to side everytime it plays - almost as if you are dancing to the music !!!


You have been doing really well and I would even dare to say that you have put on some weight - will have to weigh you and see if the scale agrees :-) 

Mommy decided to really push you with your feeds and be a little daring and .....well you know just how domesticated mommy is (ha ha ha ) and I am very proud to say that I have been cooking up all these foods myself and liquidising them !!!!! Daddy and I are not really in favour of giving you purity (bottled food), although I do keep stock of it in case we are out and I dont have access to a liquidizer.
I have dropped you down to 3 formula bottles a day and have really pushed the other three with porridge (jungle oats) for breakfast,  lots of vegies and a portion of protein for lunch and supper. So far we have tried the following with you and you seem to be okay with it all:

Gemsquash, Butternut, Potato, Carrots, Spinach, Pasta
Rice, Baby Marrow, Hake (fish) ,Chicken, Peaches
Apples and Plums - quite a selection for you
 
You have been used to having an intake of about 600ml over a 24 hour period and with pushing your feeds you are now having an intake of about 750ml  and we can most definately see the difference, you are like a lilttle energiser bunny, talking away, banging your toys with such force and like never before and now you are even trying so hard to roll onto your tummy and seem to land up with your head face down in the blankets and the rest of your body in some strange kind of twist, but hey, you are not bothered cause you just keep trying and trying and trying.



So overall you are doing really well. Your sisters came home yesterday after being away for three weeks and well they werent very impressed cause you didnt really want much to do with them - they were so offended, but I know its just cause you were tired. We have managed to get you into a really good routine and by the time they were home, you had been playing all day and had ALL this food and were really bushed and ready for a bath and bed !!!

So I told them tomorrow is another day and they can play with you then and I do believe that is all that you have been doing today is playing with your sisters. They missed you so so much and I am happy to report, they missed mommy too (the mean old witch that I am) they even cried and held onto me so tight when they came home ({sigh}) just love you ALL SO SO MUCH.
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