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.

Friday, July 15, 2011

Sleepless but happy days

Morning my little sweat pea - Mommy hasnt written to you for a while.

Besides many sleepless nights and the vicious cycle of constipation and then a runny tummy you are doing really well.

Lately when you want to do something you seem to focus and concentrate a lot longer than normal. This past week when I hold you, you try so hard to touch my face and even though it gets very exhausting and frustrating you keep trying until you get it right and when you do touch my face, it is so soft and gentle as if in complete fascination - it probably is complete fascination to you cause its not something you do often and for me it brings pure happiness and tears to my face - for most people it is such a small feat and is taken for granted but for us it is the greatest accomplishment ever and is treasured and imprinted in our minds eternally.

Mommy went to the hospital on Tuesday night to be there when Jacky had her little baby and when I got home I could barely even get into the house without the girls storming me over. They were so excited to tell me what had happened.

Kayla's mommy came to our house to bring Kayla's overnight bag and she wanted to hold you - now I have to let you know that Aunty Kirsty is very in tune with the "spirit world" just like daddy and uncle Kevin - anyway when she held you she could not stop her tears they were flowing  fast and strong and the funny thing is you were niggly before she took you and when you were in her arms you settled immediately and were in complete awe. After aunty Kirsty had her moment she gave you back to your sister and you wanted none of it - so she knelt down beside you and spoke softly to you and you settled yet again. Aunty Kirsty decided she had to get home and wanted to leave but youl started crying when she walked away and again she came back to you and before she even got to you you very nearly threw yourself out of your sisters arms to to get to her. Once she left you litterally passed out - no matter what the girls and daddy did you wouldnt wake up, but the second Aunty Kirsty sms'd to say she had made it home you woke up. Now daddy and I are convinced that you had an out of body experiernce, that you travelled with aunty Kirsty until she was home safe and sound and then you came back to us - yes people will think we are crazy - hell I think I am crazy cause this is stuff that I am definately not in tune with, but it is what it is.

And the funny thing is, for the rest of the night you were so calm and content and your little hands which are normally freezing no matter what - were nice and warm and open. Aunty Kirsty believes that your souls connected and that you have an "old soul" and you have known each other for a long time - like I say - it is what it is.

Any way little nunu my hopes and prayers are that you will continue to be healthy and that your chosen path is one that will be with us for a long time to come !!! Love you my angel
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1 comment:

  1. RubyJuly 15, 2011 at 12:44 PM

    Kim, your description of Lior touching your face brought tears to my eyes. You are amazing!

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