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, June 28, 2012

To know the value of time

Today it is a great privilege and a wondrous miracle that I get to say GOOD MORNING MY PRECIOUS PRECIOUS LITTLE ANGEL !!!

I say this because once again on Friday we were reminded of the value of time, the value of a minute if not seconds and the wonderful miraculous work of our Heavenly Father.

I was at work and daddy was fetching your sisters from school. Daddy phoned me to ask me to phone home and see if everything was okay. He had been trying to phone but couldn’t get through and he knew something wasn’t right. I phoned home and everyone was hysterical. You had a severe and violent seizure and you stopped breathing. Even if oxygen was applied it would not have helped ….. your airways were closed. Your Ouma and Oupa did really well …. they rushed you to your paediatrician, had they taken you to the ER you wouldn’t be here with us today. By the time they got you to the doctor you were completely limp, non responsive and had been without oxygen for 3 -4 minutes.

 Somehow adrenaline kicked in, for a few seconds at least and I managed to stay calm but then my heart dropped straight to the floor and I fell to pieces.

I had to get to you  …..  as fast as humanly possible. Every thought possible was going through my mind. My worst fears were right in front of my face. The thought of not being able to say goodbye, that I couldn’t hold you and  cuddle you and whisper in your ear how much I love you and that as hard as it will be, if it is your time to be embraced by God’s warm and loving arms, we will accept this and one day we will be okay. That I wouldn’t be there when you needed me the most and that you would think that I had abandoned you in your time of need. That mommy wasn’t there to keep you warm and reassure you and comfort you. That I wouldn’t be able to kiss your sweet little lips or smell your hair or feel your little hand grasp my finger or feel you nuzzle into my neck one last time.

Many people cant understand why you were “resuscitated” and I feel the need to let them know. Daddy and I have prayed and asked for guidance and we have agreed (not without discussing with you of course) that should your heart STOP beating we will not try to bring you back – then it is yours and God’s will. But should you stop breathing and your heart IS STILL beating …. we will assist you to open your airways and help you breath as far as we can.
Friday was the closest it has ever been, but your heart was still beating. When we took you for a check up on Saturday, your doctor told us your heart beat was very faint and slow, but nevertheless you still had a heart beat and he honoured our wishes by assisting you to breath.

We don’t know how you bounce back so quickly and come back to us even stronger every time but we are eternally grateful.  Even your doctor told you to at least TRY and act sick with your check up J

People keep asking us how we do it, how do we cope and the answer is YOU JUST DO !!! Besides the love that we have for you, there is no other explanation for it …………… and as I always say we are grateful for the time that we have with you and are able to love you.

Love you precious pumpkin

Thursday, June 21, 2012

A little bit of this and a little bit of that

Hello my gorgeous little pumpkin:

Its been a little while since mommy has written to you. Life continues to be good and as healthy as can be ..... of course with a few little hiccups along the way, but nothing serious. Which surprises us to no end because we were really dreading this winter and you getting sick, but thank the Lord you are as healthy as a T18 baby can be. The one thing that we have learnt is that not giving you ACC200 for two days or so causes your chest to go a bit haywire so we confirmed with the doctor and he is happy that we give it to you on a continous basis. You have also had a few seizures along the way, some bad, some not as bad .... well I suppose they are all bad so maybe its best just to say that you have recovered quicker from some than others. Although I would prefer that you didnt have any at all.

We have had grumpy days, constipated days and runny tummy days and well, lets not forget your tearful days and some very sleepless days. But all in all we definately cant complain.

Now to some people having had all these little "hiccups"  could be major and even annoying things, but for us they are small, well compared to what we have already expreienced in your little life time with us so far.

In the last few weeks you seem to be exploring a little more than normal which is great, but not so great when want to do it in the middle of the night and we are a little sleep deprived, but the nevertheless moments that we cherish. You are more observant of your toys and reach out and grab them and hold on to them more often which is awesome. Although you dont hold on for very long it is a huge achievement and we are always in complete awe when you do it. Now we just have to get you to stop smacking yourself with them. It is quite cute actually cause every time you do it, you close your eyes like its a complete surprise, but we know you are just showing off and saying hey mom look at me :-)

The other day we had a heart stoppintg and ever so proud moment, ok well at least mommy did. I was holding you over my shoulder like I normally do and your left arm was down by your side as it usually is. It always seems to be your prefererd position, but on this specific day you lifted your arm and put it tightly around my neck and gave me a hug.  I got goose bumps and my body just tingled all over. I never wanted it to end, I wanted to sit like that with you forever. It was just the most amazing experience and feeling ever, a feeling I want to feel over and over again and yet know in my heart that it wont always be possible and that you will only do it randomly and worst of all that someday I wont ever be able to have that feeling again. But for now and the rest of my life I will cherish every moment like this cause I know just how special they are.

Your laughter is so much more defined and straight from the belly and ever so spontaneous. We dont have to act like clowns for hours on end just to get a smile, now you just seem to smile and laugh at anything and everything. Just like the other day I was changing you nappy and out of the blue you just started with a great big belly laugh and pulling your knees up to your chest, with such enjoyment. It was a pleasure to experience, a priceless and emotional moment that most people take for granted, a moment that we have learnt could always be the last at any given time.

Another thing that you have learnt to compromise with is normally when I hold you over my shoulder you like to push your chin down into my shoulder and click or snap your jaw. Now I figured out that this must be a measurement of comfort for you cause now you have learnt to put your hands under your chin when you are not being held over my shoulder and click or snap your jaw with your hands. I have tried to limit you from doing this because I was scared you would pull your jaw out or something ...... yes the over protective mom again, but have given up and let you be, if it comforts you then that is what you can do.

You have also learnt to take your dummy out your mouth. Now at this point I have to say that you seem to have become rather dependent or attached to you dummy and every time you take it out, well you put up quite a performance.

So the next step is to teach you to put it back in your mouth instead of waving it up in the air.

We are glad that you have taken to your dummy the way that you have because at least you get the sucking motion that is so necessary for children to develop You dont drink a bottle, in fact you really want nothing to do with a bottle or anything of the sort in your mouth - only your dummy. So at least it provides some sort of stimulation, you have even learned to hold on to it with your one little lonesome tooth :-)

So my angel pie, we continue to pray for stable and good health and precious little smiles and adorable laughter and many more precious moments of proving the medial society wrong !!!!

Love you so so so much sweet pea !!