Letters to Lior: July 2012

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.

Monday, July 23, 2012

My favourite sound

Morning my precious little angel.

The last three weeks since your last "incident" things have been good and uneventful (thank goodness). No hospital visits and no doctor visits. I think it is safe to say that we have learnt to manage your chest and lets hope it stays that way ... I mean we are going almost on a 6 month stretch that you havent been in hospital and for us that is a LOOOOOONG time, a very long time.

I was on my way to work this morning and listening to the radio. One of the DJ's asked his listeners what their favourite sound is and he proceeded to play a recording of his newborn drinking his bottle, and while I was driving I was looking around at all the other cars and I could see how people were thinking and how smiles were spreading across their faces and I thought what is my favourite sound. There are many things and I really didnt have to think that much, but my all time favourite sound is when I wake up in the morning and I can hear your steady breathing. This for me is the most awesome sound ever because I know that God has blessed us and given us another day with you, another day to hear your laughter, your crying. Another day to watch you scratch behind you ear and to pull your ear. Another day to see you smile at your daddy and your sisters. Another day I can bath you and dress you. Another day I can kiss and cuddle you. Another day that you have beat the odds against you :-)

I am imensley proud of you my little pumpking - you amaze me every single day.

Love you to infinity and back