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.

Monday, June 6, 2011

Peaceful

Well hello my precious little angel !!! Since we have been home from the hospital you have been so peaceful and content - except for feed times ..... your appetite seems to have doubled, so no longer am I feeding you every four hours, its now almost every two and half to three hours and when you want your food .... you want your food !!! You wont stop crying/screaming/moaning and when you cry/scream or moan I cant get your feed down .... what to do !!! I cant feed you earlier than the time to try and prevent you crying cause then I am scared that I will over feed you and you will get sick. I cant give you more than 130ml per feed for the time being cause once we get to about 125ml you already start moaning as if to tell me your tummy is full and thats enough. Well I guess I cant complain, your appetite is up and you are putting on weight - will have to weigh you on Saturday, I am curious to see how much weight you have put on in the last week. The Mic-key is looking better and you have just been your normal bubbly self and ever so talkative. As for sleeping, well I guess I cant really complain on that one, except for last night you were a little niggly but otherwise all good. I just never know how many blakets to put on you cause it is flippen freazing and you sweat like crazy, but on the up side, you havent really been trying to kick the blankets off, so you must be comfortable.

Another achievement YAY - when mommy or anyone for that matter, says YES YES YES you nod your head. At first I thought it was just coincidence but its not cause as we say it we nod our heads and you have learnt to do the same !!!!! The problem comes in when we try and stop you cause once you start - you can carry on for hours :)

We are putting you in your bumbo chair a little more and you seem to be holding your head up a lot longer, although we still have to put a little blanky in to prop you up a little - you have definately got stronger. When I look at you in the bumbo, I actually realise how little you are, a child of your age would never even be able to fit into one and here we have room to prop you up with a blanky and your little head just reaches over the edge :-) - so so small and so so precious !!!

So, another birthday this week, Tia will be turning 14 !!! - wow how time flies..... not fast enough for Tia (ha ha ha ha) but definately too fast for mommy.

Daddy is finally getting better .... ummm just ...... but he is getting there. It has been so frustrating for you both cause daddy so wants to hold you and you so want daddy to hold you, but we just cant take the chance :-(

Its been awesome having you health again my little angel and mommy prays that it will stay this way for ever more.

Love you little munchkin
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