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.

Thursday, January 19, 2012

All good

Hello my little pumpkin.

Okay so daddy took you to see the doctor today and I am happy to say that everything is A - OK !!! Although you do have a little bit of a congested nose and a slight case of phlegmyness (nothing that some nose drops and saline nebs with a little pounding on your back wont sort out), otherwise the doctor is very happy.

Daddy says he is very surprised at all the solids you are getting and satisfied with your progress, even though you havent really put on any weight and you are now only weighing 6.3kg !!! When are you going to start putting on some weight my little munchkin. The doctor has suggested adding a but of pediasure to your bottles for extra calories, so will definately be trying that.

Okay so I figured out that you must be getting a little chilly in the evenings and thats why you have been so restless. For the last two nights I have put a long sleeve babygro on you and you have definately slept much better and not been so restless - yay for mommy ...... took me a while though.

We also had some visitors last night. Little Mia's mommy and daddy came to visit, they wanted to meet you and I am so glad they did. Such a wonderful couple and such precious and loving parents. It was heartbreaking to hear about the night little Mia received her angel wings, but you could just sense and feel all the love that they have for her and the awesomeness of their belief and cherished moments,  and I think some how it was a relief for them to be able to speak to someone who understands what they went through when Mia was still and earthly angel. I am glad they came and for us it was a priviledge to meet and spend some time with them.
Any way my precious angel boy, I am glad you are all well and full of beans.

Love you precious baby boy
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