Letters to Lior
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 8, 2012
Today mom is going to be taking this post to wish little Miks a happy heavenly birthday.
I know you are dancing, singing and rejoicing in heaven today little blue eyed angel.
Remember, although your mommy's heart is aching today, as it does every other day, she is ever so proud of you and misses you immensly as does daddy and your brothers. I wish I could be near mommy to give her a hug and say:
"Miks love for you is never ending, her love is more than all the grains of sand in the desert and she is watching over you and seeing just how awesome you are and is proud to be your baby girl"
Look down on your family baby girl and see their never ending love for you. Let mommy and daddy and your brothers know of your presence and just how much you love them too.
HAPPY 2nd BIRTHDAY MIKS !!!
PS: Have some angel cake for all of us here on earth !!
Thursday, May 3, 2012
Wow ...... every now and then I sort of have to shake my head to say wake up you are dreaming ..... only to realise that it is real. I cant belive that you are already TWO years old. TWO years that we have been able to love and cuddle and cherish you.
We decided not to have a party this year and just spend some quiet quality time at home. We had some suprise visitors, your aunty Rene and uncle Lion as well as aunty Sophia, which ended up being a lovely day.
I think maybe the girls hearts were a bit heart broken that we didnt have a party but in time they will learn to understand just what is important in life and I am not saying a party isnt important, but it is also important to have that quality birthday time with you as well. I remember your first birthday party, you were passed around like a little parcel and mommy and daddy and even the girls really didnt get to have that time with you. NOT that I am not happy about it, I am happy that the rest of our family and friends got to spend it with you too and of course mommy also has to learn to share :-)