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

Just dont know what to say anymore

We have had a very trying weekend. On Friday night we had 8 teenage girls in the house, so you can just imagine the level of noise throughout friday night and saturday. We took all the girls to movies on Saturday, the first time we have dropped them off at the mall and allowed them to do their own thing (quite a big thing for me, I find it very difficult to let them go and grow up). While the girls were at the mall, we had to change Lior's feeding tube. I cant even begin to explain to you how traumatic it was for us and Lior on Saturday. Normally it takes us about 5 to 10 minutes but on Saturday Lior fought us with all his might and eventually after 45 minutes we managed to get the tube in. During these 45 minutes of trying to get it in Lior vomitted 3 times and stopped breathing twice. If I could have left the tube out permanent believe me I would have. The older Lior gets, the more difficult it is to get the tube in. We have been in our own little world since then and I am finding it very difficult to come out of it.

I then get to work this morning to find out that one of my colleagues gave birth to her little boy over the weekend (at 26 weeks of pregnancy) and due to complications he passed on this morning, on the morning my little boy turns 7 months old. When will all this stop !! this year has just been horrendous. I cant say I know how she feels cause I still have hope, I still have my little boy. I wish you Gods richest blessing and all his strength through this difficult time my friend!!

I also want to say Happy 7 month birthday my little boy, a true miracle indeed
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