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

12-01-2011

When I left for work this morning my little angel, you were still sleeping, oh how I wish I could be sleeping with you. You had a seizure yesterday and nearly gave ouma heart failure. Fortunately Tannyth was there and sort of guided ouma through what she had to do. So needless to say you were restless and iffy the rest of the day and wouldnt stop crying until daddy got home and took you, then we still had to go and make things worse by changing your tube. Although you put up a big fuss, it wasnt as bad as normal, I just dont think you had the energy to fuss. BUT after that, you seemed to have all the energy in the world and I only got you to bed after 01:00 this morning. Have a headache from hell and feel like I really need matchsticks to keep my eyes open.

Your other big sister - Tia - started high school today, she was super excited and so proud to walk into the school with your other sister. It was just so heart warming to see Tannyth looking out for Tia - Enjoy the harmony while we can:).

Although I know Tia is so excited, her heart is not where it should be today. When I got home on monday, I saw that she had been crying and was not herself. It turns out her daddy was very ugly to her and she is so heartbroken and somehow I think you knew cause you talked to her non stop and made her feel a little better while daddy was trying to council her and keep her self esteem up. Sometimes I just dont know what I would do without daddy, he is definalty my rock.

You are also going to meet anuty Sharon for the first time day, she cant wait to meet you - shoo okay, getting a little emotional right now and battling to hold back the tears, so I think i will write some more a little later. Loving you so much. Love mommy
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