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, October 4, 2012

Happy days

 Good morning my little angel pie :-)

For some reason I am missing you terribly today and a little on the tearful side, not sure why because you have been really well lately, except for a little cramping after feeds, but otherwise we really have no complaints. I mean you are back to sleeping in your cot after a loooong time of sleeping in bed with mommy and kicking me every night, and as little as you are you kick pretty damn hard.

For the last week you have slept really really well ..... either that or mommy is just too pooped and not hearing you at night ...... nah ...... I think I will give you the credit and put it down to you sleeping really well

I know I have said before that you have come out of your shell a little but you have come out some more and are ever so vocal about everything. You smile and play so much more and seem to have so much energy and even your excitement is so much more visible. You have learnt to get your body moving - almost in a jumping motion when you are excited and let out a yelp at the same time. 

You have also seemed to learn how to pose for the camera, not quite sure where you learnt that from ..... oh wait, WHAT am I saying, you could only have learnt that from your sisters. They just looooooove taking photos of themselves posing and pouting ..... teenagers, what can I say

With your sisters on school holiday you are just loving all the attention that they give you, learning to draw, playing on your play gym and reading your book. lots and lots of cuddles for you, and you have even been playing with the cat - who seems to just want to cuddle with you lately as well, AND having a little bit of ice-cream.

The other day mommy decided to stop in at the baby store to see if I could get your nappies there and whilst I was taking my time looking at everything BUT nappies  :-)  daddy was having a gawk around and found a pair of sunglasses that fit you. This kind of thing may seem so trivial and such a silly thing for some people but for us it is a REALLY REALLY big thing.

Now we can actually hang out in the garden a bit and you can open your eyes outside for a change. Your photo sensitivity is so bad that even when the sun is really bright and shining in the house your little eyes go red and you are not able to cope too well.

On another note, for the first time the other day, daddy took you the barber and they shaved all of your hair off. Now you look like a real little boy - lets say ouma was not too impressed but hey, as long as you are comfortable and cool, that is what matters for us. 

 I mean we really dont want a little Mr cranky pants because he is getting too hot and yes ....  it is VERY scary how the weather affects you ..... especially when it is raining and miserable outside, cause then your mood is pretty much the same ............ plain miserable, so much so that the cat even wants to cuddle with you because she thinks you are terribly sick and in the mean time it is just the weather.
Well my little honey bunny thats pretty much all for now. By the grace of God, I wish you .... and us .... many many more "HAPPY DAYS" !!!!

Love you pumpking pie





1 comment:

  1. Hi Brave Hero Lior and Family
    My name is Jenna and I came across your site. Your kids are precious miracles, special gifts, handsome prince and beautiful princessess They are cute earthly angels. Lior is a smilen champ, inspirational hero, courageous fighter, and a brave warrior.
    I was born with a rare life threatening disease, developmental delays, 14 medical conditions.
    http://www.miraclechamp.webs.com

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