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 17, 2012

Such restlessness

Morning my little sweetpea.


This morning mommy found it extremely difficult to leave you so that I could go to work, not sure why, but when I bent down to give you your morning kiss I got this overwhelming feeling that I just wanted to keep you really close by. Maybe its because for the last week or so you have been very restless. During the day you are fine, but its the evenings when you are like this.

On 10 January you had a really bad seizure  (you hadnt had one in a while) and I say bad because normally they dont last very long, a minute or two, and you usually go very rigid and arch your back with a screetching sound. But this time you seemed to have convulsions with the seizure, which is something you have never done before and it lasted much longer, 4-5 minutes. Now this doesnt sound very long but when you are in the moment, it is a life time. Needless to say you were really pooped after that and slept for a while. Now, a few days before that at a certain time of the day you would just start moaning and crying for a little while, but at the same time every day, and looking back this was about the same time in the afternoon that you had the seizure. So I am wondering  if the days before were leading up to it. Mommy will have to start keeping track to see if it happens again.

Since then you have been fine, full of life, laughing, playing and have so much energy - as you can see in the pic with your sisters - duirng that day that is You are still getting sleep, but its not a restful sleep and I just cant figure it out. I am not sure if you are getting cold, cause when I feel you, your skin is like a block of ice and you head is warm but when I put a blanket over you, you just go wild and kick it off - I guess you just dont like blankets. Or it could be that somehow you get your little feet stuck in between the railings of the cot and you cant seem to get them back in so you get irritated and let me know. Then, I never know if you are hungry or not, when I think you are I feed you and you never seem to complain, so maybe its that ....... sigh ...... I just dont know.

Two nights ago mommies heart fell straight to my toes and it really was the worst feeling. You were sleeping in your pram and you hadnt moved in a little while so I got up to have a look at you and you had a very strange glossy kind of look and it immediately sent a wave of panic through me, so i quickly checked your chest to see or feel movement and at that moment you decided not to take a breath for about 15 seconds !!!!!  It was the worst feeling ever, at that moment I though I had lost you. it felt as though someone had tied a rope around my heart and just pulled and pulled and finally squeezed the life out of me. Tia was sitting next to mommy and she picked up on my panic straight away and just quickly put her arms around me and held me tight. Oh my baby boy what will I ever do .....

So daddy is going to take you to the doctor today for a check up - you woke up this morning and your one eye was full of gunk - thinking you have a bit of conjunctivitus. So I think Dr Roelofse needs to do an all over check up. I just pray that is all it is.

Love you baby boy

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