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

03-01-2011

Happy new year to all, may 2011 be a wonderful and prosperous year in everyway possible.

Lior is doing great, although he is a little snotty and coughing a bit, but nothing serious, as long as I keep nebbing him he will be fine. We had a wonderful christmas with the entire family and a quiet new year with the kids, I think I was asleep beore the new year even kicked in !!

Lior is now 8 months old and going from strength to strength every day. He has learnt to turn himself in a full circle when he is lying in his play gym and can entertain himself for ages. We figured out he just loves classical music, his whole demeanour changes. He has learnt to play peek a boo with us and is manouvering himself a little more in his walking ring. He is also trying to eat purity, yesterday we managed to get him to eat 6 mouthfuls and then he just gets tired and irritable so we have to tube the rest, but at least he is trying.

Not quite sure what to do about feeding tubes for Lior, the suppliers have discontinued the make that we use, or should I say the length and the next length is double the size of Lior. Its either this or using the weekly tube and I dont want to do that cause the older and stronger Lior gets, the more difficult it is to get the tube down, he fights so much and just stops breathing, and I think I would rather only go through this once a month than once a week !! I will have to phone the world to see if anyone of the hospitals may have stock lying around.

Was difficult coming back to work today, kind of felt like when I had to come back from maternity leave, just did not want to leave my little boy. In any event, I am sure he will love spending the time with his sisters and his ouma.
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