Before birth Lior was diagnosed with Full Trisomy 18. Below is an explanation to help you better understand. Most T18 mommies had never heard of the syndrome until their babies were diagnosed. This blog is a day to day account of what Lior goes through and how the syndrome affects a child.
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, August 4, 2011
So thankful
We spent the next four days in hospital, with a little blue spell here and there but the minute we noticed we gave you oxygen and you settled very quickly. The doctors are not sure why this happened and I guess we will never really know. One paed says its just one of those life threatning incidents and another says it could have been the start of croup - the xrays showed your lungs to be clear.
We finally made it home on Monday and you yourself were so happy to be home. I put you in your walking ring and for the first time you were happy to stay in there and play for a little over an hour. You have had a few good days since.
Mommy got home from work yesterday and you were sleeping. When your sister wanted to bath you yesterday afternoon, you began having a seizure, a mild one. Tan called for daddy and they got you semi settled, but as soon as it stopped another one started and not such a great one at that. It drained you so much, you didnt even budge when I got home, let alone bat an eye lid when daddy spoke - and when you normally hear daddy's voice you go wild. We decided to let you sleep so your little body could get some rest. Eventually you woke up at about 9 or so and decided it was time to play. Yes it amazes me, after all your little body has been through, you still have the energy to play and cuddle.
I took you to the lounge and a few minutes later the lights were out - no electricity whatsoever. I must say it was actually quite nice sitting in the dark. the house was quiet and you were in awe of the lead lights from the lamp. Daddy was making shapes on the ceiling and you couldnt move your eyes away - it really was a special moment for me. We had some cuddle time and then you went to sleep and didnt really have a bad night after that.
I am thankful for every day that we have with you my precious. I am thankful that I get to see the gleem in your gorgeous little eyes. I am thankful for your smile and your little giggles every now and then. I am thankful that you try so hard to stand. I am thankful to be able see you get frustrated when you try and get your finger in your mouth. I am thankful that I can feel your skin against mine. I am thankful that I can see your daddy and your sisters cuddle you and shower you with love. I am thankful that I can hear you cry. I am thankful that at times you can feel my tears. I am thankful that I am able to put little socks and shoes and your tiny little feet. I am thankful that you can reach out and touch my face. I am thankful that you can wrap your tiny little hand around my finger. I am grateful that at times you will look directly into my eyes . I am thankful that I can breath your scent in and most of all I am thankful that God gave you to us and made you as special as you are.
Love you sweet pea !!
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