Letters to Lior: August 2016

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, August 23, 2016

Tough times

Hello my little angel.

Its been a little while since I have been here. Times have been a little tough lately, emotionally. Saturday is was a year since uncle Kev left us and I am sure the two of you were looking down on us and all our misery - we cant help it, we miss you both so much.

The funny thing, is I think you and uncle Kev have been playing silly buggers with me and daddy. its happened to me twice but I never really thought about until last week Friday when daddy had my car and phoned me to ask me if just out of the blue when the radio was on, had it every just changed to the CD player. Now bearing in mind the CD that is in at the moment is one that was played at your service when we said our last goodbyes and the song that starts playing is track 11 which the first few words are "I hold you in my arms" - so most people find this kind of freaky but daddy and I have decided that you and uncle Kev are just letting us know that you are still around :) it makes my heart so happy and yet so sad that I cant see you "being around".

I finally dreamt of you the other night, not that I can actually remember my dream, all I remember is that you were no different to when you were with us, still the same size, the same smile, the same gorgeous little munchkin. Your sister said she also dreamt of you but also cant remember her dream. So come back to us in our dreams binky bums we want to see you some more !!

Never a moment goes by that you are not in my mind.

Lots of LOVE Mommy