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

07-01-2011

My little munchkin, when I got home yesterday the girls were not in the greatest of moods and neither was daddy or ouma. They said you did not keep any of your feeds down the whole of yesterday and just would not stop crying. Tannyth eventually started crying cause no-one could get you to stop until you eventually fell asleep at about 16:00, and a quick nap it was. When I got home you were all talkative and not letting anyone get a word in edgewise. I gave you a nice warm bath which relaxed you completely and when I was dressing you, you decided to paly peek a boo, just toooooo cute. I eventually got you to sleep close to 22:30 last night with your feed, got into bed close to 12 and was up at 3 again to feed you. Then not quite sure how, but you managed to rip the plaster of and pulled your tube out somewhere after 4. Dad was not impressed, this would mean that we would have to start the day feeling incredibly guilty and depressed when putting the tube in and feeling like we are hurting you, but this morning I put you on the table and you were sleeping, didnt even blink, - ok a stretch here and there but you didnt fully wake up. When dad put the tube in you fussed a little but not much, by the time you realised what was happening the tube was in and mommy quickly calmed you down and you fell asleep within two minutes. What a relief at least we didnt have to panic with you not breathing or anything. Now we know that when we need to change the tube, to do it early morning when you are sleeping. Lets hope it happens the same way. Anyway you kept your feeds down last night and hoping that you will keep them down today.

Tia is in her element, cause all your other sisters are sick so she is the only one that is allowed to hold you and she is just loving it .... having you all to herself. Well my little one, in the next few days the house is going to be very quiet, your sisters will be going back to school so at least they wont wake you up in the morning anymore, not that you really wake up before 10. When you want to sleep, nothing seems to bother you. I guess it will be back to fighting with Tia to try and drag her out of bed in the morning. she is like you, loves her sleep - when she wants to :-)

Missing you much and cant wait to get home to be my family. Love you lots!!
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