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.
Wednesday, June 29, 2011
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 !!
Monday, June 20, 2011
Get well soon little Miks, and lots of love and ((hugs)) to you and your mommy !!!!!!
Friday, June 17, 2011
You seem to be a little on the pleghmy side again, thank goodness I have some pulmicort at home - been nebbing you with that twice a day and giving you physio and you seem to be a litte "clearer" this morning. Yesterday was particullarly iffy, you were very snotty and mizzy most of the day and with all the heaving through out the day, eventually at about 4 you managed to get out a huge amount of phlegm and were promptly better after that - having your normal cuddle with daddy and for a change getting excited with mommy !!! My heart did somersaults - for the first time I could visibly see your excitement, so much so that you very nearly threw yourslef right out of daddy's arms - the best thing ever !!!!!!
We decided to give you some sleep meds last night, cause you had a bit of an iffy day and decided that you, as well as us, were in much need of some sleep - and we had to change your freaking formula again. We are just at our wits end cause every formula you are on seems fine for the first few weeks and then ......... well ja. So the Similac has really started making you cramp but really badly - and we need to keep you comfortable - so going back to the lactose fee and daddy said that this morning you had no cramping - what a relief. Hopefully we dont have to change it again - but if we do Daddy and I though we should try the Novalc AC - especially for cramping and flatulance - okay I suppose everyone is wondering why we didnt use that ages ago - umm we only discovered that yesterday !!!!
So sleeping now - nice and peaceful - wish I could be home with you, daddy and the girls !!!
Monday, June 6, 2011
Another achievement YAY - when mommy or anyone for that matter, says YES YES YES you nod your head. At first I thought it was just coincidence but its not cause as we say it we nod our heads and you have learnt to do the same !!!!! The problem comes in when we try and stop you cause once you start - you can carry on for hours :)
We are putting you in your bumbo chair a little more and you seem to be holding your head up a lot longer, although we still have to put a little blanky in to prop you up a little - you have definately got stronger. When I look at you in the bumbo, I actually realise how little you are, a child of your age would never even be able to fit into one and here we have room to prop you up with a blanky and your little head just reaches over the edge :-) - so so small and so so precious !!!
So, another birthday this week, Tia will be turning 14 !!! - wow how time flies..... not fast enough for Tia (ha ha ha ha) but definately too fast for mommy.
Daddy is finally getting better .... ummm just ...... but he is getting there. It has been so frustrating for you both cause daddy so wants to hold you and you so want daddy to hold you, but we just cant take the chance :-(
Its been awesome having you health again my little angel and mommy prays that it will stay this way for ever more.
Love you little munchkin