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, April 7, 2011

13-09-10

Grrr !!! it is so annoying when you are ready to publish your post and you lose everything you have just written, so lets try again.

We had a good weekend spent time quality time with the family and went out for a change. We dont normally take you out that often cause I dont want to make people feel uncomfortable with your feeds - but now I just dont care - its not natural for others but its natural for us.

We took you to the mall on Saturday and you just loved every minute of it, you did not want to be in the pram, you wanted to be in our arms just so you could look at everything, you were in your element "talking away" looking at the lights and as daddy says - talking to your angels!!

Everyone kept asking us how old you are and were so suprised when we told them 4 month - they all thought you were only a couple of days old !! - okay you are tiny, but you are a lot bigger than a few months ago.

The morning did take a bit of an odd turn though, two ladies asked us how old you are and why you have a tube in your nose - so i explained to them that you had Trisomy 18 and naturally they asked what it means and I told them all about it - I definately did not expect the reaction I got - the two of them looked at me and started crying - two people I have never met before !! - I rubbed the one ladies arm and said its ok and then I had to walk away - Your sister was very uspet with me, she kept on saying that I must go back and talk to them, but the thing is, how do you comfort someone you dont know and especially when it is something that is so close to your heart. I know one of the ladies is expecting so I am sure millions of thoughts went through her mind, but I am sure her and the baby will be fine and I wish them all the best.

Mommy is a bit on the tired side today - sort of living on maybe 3-4 hours sleep a night - Daddy stayed awake with you the whole of Saturday night so that mommy could sleep but without the both of you in the room, mommy did not sleep much. Right now, if we are lucky we get maybe 3 hours sleep a night. You didnt have such a fantastic night last night, you were very restless and needless to say I jumped up every time you ummed and aahed. Somehow you manage to wiggle yourself under the blankets - maybe you are like daddy - you like to sleep with the blanket over you face. We eventually got you settled before I left for work this morning - you fell asleep straight away - oh how I wished I could snuggle up with you. Back at work and missing you terribly - longing to be home
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