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, November 1, 2011

and .............................. wheeeeeeeeeew breath out

Hello mommy's precious little bumkins. It all just seems so ..... I dont know actually, but all I can say is wheeeeeew breath out .....

You see my little angel when I was pregnant with you, the doctors told us that you would never make it to full term and most likely be stillborn or that I would miscarry - you made it full term. The night you were born they told us that you would most likely live for 1 hour and no longer - you lived longer. They then gave us two days - still you lived longer. Then two weeks - you proved them wrong. Then 18 months maximum - and Woooooooohoooooo you are now 18 months and 3 days old. Yet again my sweet pea - you have shown your will to live, your will to love and your will to learn - you have surpassed ALL doctors expectations - you have even put smiles on their faces and made them think again and I guess you could say, you have allowed them to believe. You continue to put so much meaning into our lives and continue to teach us so much - things that we would otherwise never have learnt .... and for that I will be eternally grateful.

Although we know our time with you is limited and as hard we try not to, it is never far from our minds, but you have taught me to have faith and to cherish what is now - so although I do most definately look to the future at times, I will always cherish and live for now, live in the moment.

On another note - you are doing awesome, in fact I would go as far as saying you have never been better. You have soooooo much energy, talk the hind legs off a donkey, squeel when you want to, you have even learnt to say no to your sisters when they irritate you - with a real uhuuuuuuhhhhh and when they irritate you some more you kind screetch it out - just love it. You also play with three of your toys on the play gym and not only the one and it always amazes me cause you never seem to look at them, but you seem know exatly where they are so that you can it them with your rattle - or should I say bash them :-)



Tan has taught you to play roll over - she rolls you over a few times and then sings to you and you have picked it up rather quickly. Although you dont roll over by yourself, you try - and you get as far as rolling half way onto your tummy and squishing your face in the blankets, but cant seem to get your arm out from underneath you - so thats your next learning curb. It is just so delightful to see you this way, always smiling and laughing and even getting cheecky - but thats okay you are allowed to - shhhhhh dont tell your sisters that :-) they might think they can start being cheecky - ha who am I kidding, they are already cheecky !!!!

Love you pumkin pie !!!!!

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