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

breakdown

Everyone keeps telling me I need to break down some time and I guess today is that day, not sure why but I cannot seem to stop the tears and feel like my head is in the clouds - or should I say in a thunderstorm. I owe my daughter an aopollogy, snapped at her this morning and it was not called for - which is making me feel even worse. and in the process managed to close the gate this morning and pull it right off its hinges. I feel like I just want to climb in a little bubble for a few days and just cry till I cant cry an more. Lior is doing well, still a bit chesty so will have to keep an eye on that. He has been sleeping well the last few nights - not sleeping during the day though. Dont know how he does it. He is becoming a real little character with his facial expressions, especially with his eyebrows. He is sucha cutie pie. I put him in the walking ring this weekend, he loves it for the first five minutes then starts getting a bit irritated. I suppose a little bit every day and he will get used to it. At least it will help him strengthen is back muscles so he can start sitting by himself. One step at a time - it is going to take while.
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