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.

Wednesday, June 29, 2011

14 months today !!!!

Morning my precious little baby boo, HAPPY 14 month birthday !!!!!! - WOW how time flies - and you are doing so well. We have our up and down days but they have definately been more up than down the last few weeks. Although on Sunday night or should I say morning you decided you only wanted to go to sleep at around 4 in the morning and mommy had to be up for work by half past 5 - so mommy and daddy are still trying to play catch up, feel a bit drained but nothing that some sleep wouldnt cure - if we could get some ((sigh))

So daddy has been doing a lot of physio with you and needless to say you just love every minute of it. Normally your little arms and hands are up in the air and in your face - well at least you are trying to get your little fingers in your mouth, but the minute daddy puts you on your pillow, you would swear you have just hit the beach and ready for a day of relaxation. Your little arms automatically go to your side, completey spread out and relaxed and ready and waiting. The cutest thing ever is the little grunting noises you make - imitating daddy - when your legs are going up and down. This really seems to be helping for you because you are more alert and stand a lot longer than you normally do and hold you head up for long periods of time and even try to bounce while we are holding you, and the strangest thing of all it actually gets your tummy going - who would of thought ((hmmmmm)).

We have still been battling with your feeds a little, some days you really wont keep most of your feeds down and have so much Pleghm but its usually for one day and then you are fine for a while. We tried decreasing your feeds but mommy worried that you werent getting the right amount of food for the day so we upped it again to your normal and now feed you half and wait about twenty minutes and feed you the rest. This seems to be working for now, just hope it stays that way.

I am glad to be able to say that little Mikayla is doing much better and is home from the hospital - although she really gave her mommy and daddy a very big scare - but like her mommy says, she has been writing her own little story and continues to do so - so so proud of you little Miks, keep it up precious little girl.

I guess we all just have to make it through the winter without any more incidents and then I think we will relax a little more, not be on edge so much wondering if every little cough you have is telling us you are sick - instead of maybe just clearing your throat - yes I know ...... paranoid I am, but the thing is with you it happens so quickly and before we know it you are really very sick, but touch wood my little angel and thank you heavenly father that our little boy has been well and pray that he continues to be so. 

We have continued giving you the Neulin (Stimulates breathing) which the doctor prescribed when you stopped breathing and it really seems to be working well, although sometimes you still lose breath when you are irritated or trying to pass a stool, at least you dont go as blue and dont pass out and then go limp, so I do honestly believe that it does make a difference. So definately going to be keeping you on that and doc has suggested it be a chronic mediation together with your seizure meds - oh that also seems to be working cause you havent really had one of those in a while - please lets keep it that way.

Anyway my little munchkin - mommy just wanted to you know that I love you lots and think of you every second of the day !!

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