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

Ouch

Lior really didnt have a good night last night. For the past week I have been persisting with his "solids" (liquidized or watered down) so that it can go down the tube) and I think that is what is really constipating him, we give him stimulants to get his tummy working which it does and he is normally fine with it, but I think he is cramping really badly, so I decided that I will back off with the solids for a little while and just give him porridge in the morning and slowly build it up. From 9 last night he was crying till almost 12 Eventually he settled and went to sleep and then at 1:45 he woke up screaming, got him settled again after 3 some time and was up with him screaming at 5 again this morning. I just felt like crying myself, his little voice is so hoarse from all the crying !! poor little nana.

I entered Lior into a baby competition - thought what the hell, he is who he is and I am proud of him and love him to bits and iether people will vote for him or they wont. We got an e-mail this morning telling us to go to the site (http://www.taurusinc.co.za/results.asp?category=266200917237) to see which babies have been eliminated from the competition for not having enough votesd and Lior IS STILL IN THE COMPETITION !!! Yay my little pumpkin is soooooooooo gorgeous !!!
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