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

heartsore

Lior had a great night last night and the night before, so decided to give his daddy a big scare this morning. Had a bit of a cough and just stopped breathing, something we have gotten used to - well as much as one can get used to - but when daddy panicks I know it is not good and that it has been a serious one, cause he is the one that always stays calm. Says Lior just went stiff and then blue, purple and then black and then limp. I cant begin to tell you how scary it is when this happens. Lior's dad and I decided in the begining that we would let nature take its course and when the time comes for Lior to leave us, we will not try to resucitate him. This is one of the most difficult decisions to make and I know most people would say how could you do that - but how can we keep a little soul going for our own selfish reasons. But we have decided if it is one of his little "episodes" we will do what it takes, but if Lior has an apnea attack we will leave it in God's hands. His daddy is so tired, he does not let go of the emotion and tries to stay strong for all of us, but I can hear in his voice today that he is taking strain and feeling emotional. I just want him to know that I love him dearly and I know that he deals with this in his own way and that does not make me love him any less. He has been a gift from God to me and my daughters and has made us whole again. We love you so much !!
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