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

Hallelujah

What a mission. Have spent most of the day on the phone to get a feeding tube for Lior. Can you believe there is only one hospital in the whole of Gauteng that stocks it- ok others do but they dont stock the size we need. They keep telling me it does not come in the size I am looking for. Am i freaking dilly - I could have sworn the tube Lior has in now is 56cm - they keep telling me it only comes in 107cm. Bearing in mind that Lior is only 54cm tall and as it is, it takes atleast 1.5 to 2 hours to feed him. Can you imagine if I used a longer tube, it would take me four hours. I would probably just finish feeding him and then have to start again, considering he is being fed every 4 hours !!! Are these people insane. Actually why do they put people in these positions when they have no clue of what they are doing. Okay I am being mean now, a little on the tired side so I am allowe dot be. In any event I have managed to find the supplier of the tubes - what a relief and they are closer to home !! so from now on we will get it from them, at least they know what I am talking about !!!
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