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.
Tuesday, May 31, 2011
Back home .....
So back in hospital and still not settling, eventually after a whole lot of pain meds and close to midnight you fell asleep - something your little body so desperately needed - after all you only had basically 4 hours sleep from Thursday morning uptil you fell asleep at midnight on Friday. Your x-rays came back clear and it was such a relief for us, but we still did not know what was wrong. Eventually we thought maybe you have an infection in the Mic-Key - and boy what and infection it was - took almost 5 days of intravenous antibiotics and lots of cream with antibiotics in it to settle the infection - still a little inflamed but so so much better. Hilda came to have a look yesterday and said all was good. Mommy phoned the doctor and he was happy and asked when we wanted to go home ................. ummm let me think ....... TODAY WOULD BE NICE !!!!! So we went home last night and for the first time in almost a week you had a relatively good nights rest, but daddy had to sleep in the lounge cause he is not so well - umm lets reprhase that, he is as sick as a dog !!! But at least we all got a little more sleep last night.
Daddy and I were talking yesterday and decided that we just need to get over ourselves, before we never had an issue when you had one of your spells, we dealt with it and carried on ..... but now cause of last week when we had to rescuscitate you, I think we are just both petrified, this last week in hospital everytime you had a little spell we went screaming through the passage shouting for oxygen and suction - I guess we are also just human and panic a little - its been a hard knock for us, but we will pick ourselves up and carry on !!
Love you lots little Monkey !!
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