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

26-01-2011

Mommy is not quite sure how to feel today, I think I am just tooooo tired to feel anything right now.

The last three nights you have been so restless that we have only managed to get at least two hours sleep every night. The night before last you had another seizure, not a severe one, but bad enough. You were fast asleep and I put you down in your cot for the night and quickly went out the room to make a bottle for your next feed, (something I never do, I never leave you alone, but you were sound asleep, breathing easy and restful). I was standing talking to daddy while shaking/mixing your bottle and next thing I knew there was a horrible screetching sound coming from the room, normally when you have a seizure, you dont cry or moan, but this one you just screetched with the rest of the symptoms you have. Fortunately it did not last as long as the previous one, so you settled very quickly. Although I know I couldnt have stopped it, I feel so guilty for having left you for two minutes. NEVER AGAIN !! Daddy and I have decided we will split your meds and give you half in the morning and half in the evening as it makes you sooooo restless, maybe it will be better this way and you can work most of it off during the day. I think daddy had enough of my umming and aahing every ten minutes last night and then to top it all off, not sure how the heck it happened but I knocked over a jug of water which fell into your cot and eveything was soaking wet. So I padded the pram with blankies cause during the day (when you decide to have a nap, which is not the norm) you love sleeping in it. SO I put you in there and well still every ten minutes umming and aahing (from me of course) - not sure if it is tiredness or frustration or what. It was a long day yesterday off to work at half 6, home by 6 and then off to youth with the girls for their little function and eventually home just after 9. I think right now mommies body is screeming for some sleep, but we will push along and try to remain calm and unemotional and patient. (easier said than done right now). I think you are teething more than normal right now cause dad says you had a really runny tummy this morning and you didnt keep any of your morning feed down. But I am not really too concerned about that, you have kept your feeds down very nicely the last week or so. I guess mommy is just feeling very, lets say - overwhelmed today and the fact that I am not with you is making it even harder. Missing you terribly today my little munchkin
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