Letters to Lior: I still would .........

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, April 2, 2013

I still would .........

Hello my gorgeous little pumpkin

I just love waking up to your morning smiles, which was quite a surprise on this particular morning. The night before you were a little bit on the mizzy side, nothing serious but then at about 9 in the evening you just decided it was time to cry.

It was so heartbreaking because you could hear that you were in pain and we just couldnt figure it out. The pain meds took about an hour to set in and in the hour that it took to work, mommy had to give you some oxygen. Well you were not impressed about that at all, but we had to do what we had to do. Fortunately it settled you and all was good.

The other part of this all, like your sister said, such a beautiful moment in such a sad moment .... you see my sweetheart, you have never cried tears, and at this point in time your tears were falling ...... and it broke my heart to no end :-( but made my heart happy that you actually do have tears ...... I know it sounds so strange for some people but for us it is pretty much another little miracle ......... little for others but big for us :-)

Other than that, the next morning you woke up all happy and playful, no vomitting, no crying ..... just my normal happy little boy and still my normal happy little boy. But in any event daddy is taking you to the doctor today for a check up, just in case. We are battling with constipation again so maybe its a good thing.

Still loving all the attention from your sisters - one really loved little boy !!!

Tannyth was away for a few days so the
two of you have been playing catch up and by
the looks of things having such a lot of fun .....
typical teenagers with all the photos,
but I definately dont see you
complaining

Tia and Diana also take every opportunity they can get to take photos with you, and I am glad. Building memories is just so important

Heck you are even playing twister with them ..... just too precious for words.

On another note, mommy was going through facebook earlier today and I came across a poem that was written, I am not sure by who but this poem just says it all, and this is how it goes.

"If before you were born, I could have gone to heaven and saw all the beautiful souls I still would have chosen you

If God had told me, "This soul would one day need extra care and needs"