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

20-01-2011

looking at peace and completely comfortable this morning - My wish is for you to be this way everyday. Monday wasnt the best of days, daddy phoned me at work to say that you had a bad seizure, or should I say a longer seizure than normal, in fact we think that you had one and just as you were coming out of it another one came along and as drained as you were, you were still the happy little Lior that we know. I remember trying so hard not to cry when daddy phoned me, but I just couldnt help myself, I think the fact that daddy, who is normally the strong one was emotional, so I knew it was not a good one. This definately took its toll on daddy, emotionally it drained him. He fell asleep just before 17:00 and only woke up the next morning. Something I think his body desperately needed. We took you to the doctor and he said he expected you to start with siezures long time ago. He said he is very happy and surprised at your progess, and his words "you guys have done so well, and to think that I didbt even give this baby a chance when he was born" - I have so much respect for him, cause that is not something that most people would admit to. In any event, your chest is clear thanks to the daily saline nebs. This has sort of become a ritual for you, you sit comfortably in front of the tv and let it all just happen - my happy little miracle.

We started you on the meds for the seizures. Daddy and I were scared to give it to you at first cause we were not sure how your body would react to it. Daddy still said to me that he was not going to let you sleep in your cot and that you would sleep in bed with us. So we decided to give you the meds early so that we could monitor you. Well it knocked you for a loop, within ten minutes you were fast asleep, there were no side effects except for a little restleness. My only concern was that the medicine would make you like a "zombie" but it hasnt, so my heart can rest. You have stayed as talkative and as happy as you always are. I think many people need to take a lesson out of your book, you have had so much going against you, yet you fight back and still stay happy and shine your little light on everyone around you, no matter what the circumstances are, no matter how crappy you are feeling your little light shines ever so bright!!
Posted by at

No comments:

Post a Comment

Subscribe to: Post Comments (Atom)