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.

Monday, May 9, 2011

Giving thanks

Morning little munchkin - ok so we are both a little on the tired side, not been sleeping so great, but all par for the course. You had another seizure on Friday night. It was so strange though I was taking your clothes off and getting you ready for a bath and once I put you in the water you still seemed okay and then all of a sudden you pushed your arms in front of you and they went stiff (thinking back now obviously it was involuntary) and then your legs went stiff and you arched your back - at the time I thought you were just trying to get your head in the water, cause thats what you love to do, you love the feel of your head floating in the warm water - BOY WAS I WRONG - it took a little while before I realised your breathing was laboured - I guess cause mommy was making so much noise while I was singing to you (I need to be a little more careful and observant, I could kick myself that I didnt realise sooner), so I eventually realised your were having a seizure and quickly took you out the bath and wrapped you in your towel and by that time you were now screaching and if I tried to straigthen you out I probably would have snapped you in half - thats how stiff you went. I screamed for daddy and he put you in the "rescue poistion" and some how daddy's voice seemed to calm you down and you came out of it relatively quickly. I think you feel mommies anxiousness and tend not to settle as quickly with me. You were pooped after that but ok.

Other than that we, had a wonderful weekend, ok could have been better if the girls were with us, but I suppose they also need to visit their daddy :(  So it was mothers day on sunday and my present ........ YOU and the girls of course - yay the best present ever !!! I know this might sound strange to some people but every day with you is like a miracle - especially a special day like mothers day.

You slept relatively ok last night, could have been better - well only once you went down sometime after 11. You were your nomal bubbly self the whole day and slept for a little while in the afternoon - and I thought yay, we get to sleep tonight (you only seem to sleep well at night if you have had a good 2 hour nap in the afternoon). Your feeds went well, no problems, no cramping, no nothing, BUT then at 8 last night you just started screaming and screaming and screaming - we could hear it was a painful cry but had no idea what it was at the time - you didnt settle with me so daddy tried - no such luck there and back to mommy, eventually you settled laying on your tummy with your head on my shoulder, but the minute I tried to move you - well what can we say - some more screaming - granted it was only for an hour but and hour too long. Even though you never get any tears (part of the syndrome) - your litte eyes were swollen and red, as if you had been crying for hours and hours on end. You eventually settled after some ponstan and a porridge feed and slept for a few minutes (and I litterally mean a few minutes) and then after that - I guess it was your time to play. You were having such a ball, screaming at mommy and daddy and getting ever so excited, at times I thought you were going to jump right out of my lap to get to daddy and waiving your arms about. The best thing ..... normally when you hear daddy you will only move your eyes around to try and find him, but last night when mommy was holding you and daddy called you, you almost pushed yourself away from me to turn towards daddy  ............ what a precious moment (things most parents take for granted). So now you are beginning to decipher where the sounds come from - all just so awesome and so overwhelming.

In any event, daddy is taking you to the doctor for a check up, mommy thinks you may have had earache last night cause when I fiddled with your one ear you quite literally lifted your shoulder to block any touch to your ear, so we put some sweet almond oil in your ears and covered them up with cotton wool. Seemed to have done the trick, but we just want the doc to have a quick look overall just in case, so we can stop what ever is comming.

Sunday was little Mikayla's birthday as well and her mommy is so proud of her, well I guess her entire family is so proud of her, including us !!! The two of you have exceeded all expectations, stayed alive and held on tight with both hands, done things the doctors said you would never do, and most of all just been the most precious and special little lights or our lives - thank you for being MINE and DADDY's little angel boy. Thank you for changing our lives for the better.

Love you so so much !!!

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