Letters to Lior: November 2014

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, November 18, 2014

Forever counting

Ai my binky bums - the last few days have been so incredibly difficult and emotional - I miss you so so much.
It has been a little over six months now your little body is whole and that you are running freely with our heavenly father - it feels like just the other day but yet a life time that you gained your wings.
Whilst you were with us big boy, we were forever counting and celebrating the days, weeks, months and years we had with you and cherished every moment, and now even when you are not with us, we are counting the days, weeks and months that you have been gone. I don't thing we really know how else to survive - just day by day I guess
The fact that Christmas is around the corner and it will be our first without you makes my heart shatter even more. I know its a time that we should celebrate and be thankful, but I am no where near that frame of mind, in actual fact I am not looking forward to it at all. Would be quite relieved if it never comes.
I know we have many "first" milestones that we still need to get through and maybe once we have gotten through all the very special days like birthdays, Christmas, Easter and other days, maybe then it might become a little easier, but somehow my heart tells me it will never become easier. You are our little boy, our little miracle and should be here with me and daddy and your sisters.
We shouldn't have to be living life without you - its just too hard L