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, November 30, 2011

A .... MAZING !!!!

Morning precious angel.

Yesterday was your 19 month birthday - who would of thought, I mean after all the doctors only gave us a maximum of 18 months with you :-(   but here you are, happy, healthy (well as healthy as a trisomy baby can be) and full of life !! So HAPPY HAPPY HAPPY big boy - we love you loads !!!

We started you on solids - yes I know most people think what the heck, you should have been on solids long ago - and I agree, but with all the reflux and constipation problems it has caused a BIG problem and you just couldnt cope, so we had to wait until YOU decided your little body is ready. So now we put a spoon of porridge in each bottle - dont want to over do it and give you too much for now - and on Sunday we started giving you gem squash - mixed with butter (not so healthy for us, but a good one for you cause it will help you put on the weight you so desperately need) - all this liquidised and put through the tube and so far so good,  even your tummy decided to work on its own yesterday - poor daddy, a really big stinky one at that -I know how much he loves those :-). So maybe next week we can try some pumpkin or potato, will have to see.

We have also started trying to let you taste a little more by mouth and you seem to be a bit more patient. Normally its just a complete no go when we put something in your mouth but you seem to have developed a taste for RUM & RAISIN ICE-CREAM - of all things !!!!! but hey if you going to eat it who's complaining - definately not mommy. We have also tried candy floss, initially you dont like the fluffiness of it but as soon as it melts, well you dont complain either. Yoghurt - there you seem to be rather fussy, you dont really mind the strawberry flavour but dont really like it either - hard to explain and the berry, well lets no even go there. Ouma gave you some and it took daddy half an hour to settle you - you were not impressed. Zoo biscuits are also another favourite, you like to chomp on those, even though you dont have any teeth yet - maybe cause your gums are itching ...... (sigh) when are those toothies going to come.

Ouma has been very patient as well and getting you to drink about 20ml of water by mouth through out the day - not with a bottle though - we have to use a dropper and drip it into your mouth, but who cares at least it keeps your little mouth moist and helps with the thirst. That is one of the hardest things cause I never know if you are thirsty or not. Do you get thirsty even though your water and juice and feeds go down the tube?

You also seem to be sleeping really well lately - no more late nights for mommy :-) but it is also sad, cause now I dont really get to spend much time with you during the week. When I get home from work, its a quick bath, a feed and by the end of that you are ready for bed :-( and its not a bad thing, I just miss the bonding time we had before - even with all the frustration of no sleep, but what is best for you is what goes in our house !! So all in all lots of rest and a much happier baby - YAY !!!

We decided to take your mickey out and clean it on Monday and as usual mommy was a complete nervous wreck - you would think I am used to it by now. Your sisters were extremely nervous cause this was the first time that they were going to see clean it and they were expecting see this HUGE hole in your tummy - and they were quite pleasently surprised that it is a tiny hole and they COULDNT see the inside of your tummy - panic mechanics - look who is talking ... ha ha ha. Anyway my hands were shaking while I was cleaning your stoma and daddy was cleaning the mickey, but you just thought this was the funniest thing, maybe it was a bit ticklish - I dont know - but you were really having a good giggle - at least it all went well and we got it back in, no problem. Not that we ever have a problem, but I guess mommy just stresses that there is always a chance that we cant get it in and we were told that we have to do it within 10 minutes otherwise your stoma closes !!!

Saturday was a very sad day but also a very exciting day. Sad because our heavenly father came to fetch little Mia - another little T18 baby in Cape Town. Mia only lived for a few months but in her few months here she was a complete blessing to her mommy and daddy and to so many others. RIP in little Mia. I know you are dancing and rejoicing with all our other little T18 Angels.

Mommy has also  been thinking about aunty Taryn for a while now - I really must phone her. I know she misses little Miks so much. So aunty Tat, thinking of you  - always do - and sending you lots of love and hugs !!!

Saturday was also an exciting day, we got to meet aunty Gail. She has been following our blog for a while and we have been chatting, but never met. So saturday we met and wow what an awesome lady. Great to have met you Gail.

I guess that is all for now my precious little monkey. Mommy loves you lots and lots.

Wednesday, November 23, 2011

What most people take for granted, I cherish with all my heart

Hello mommy's precious little boy. Last night you fell asleep on my lap - like you normally do, but this time you grabbed my fingers and held on tight. It brought tears to my eyes, not because I didnt want you to, but because just that little moment which most people would take for granted, as a normal every day action, but for me, it is a moment I will cherish forever and all eternity which will remain imprinted within me, because I know that tomorrow or the day after, maybe in a week or two or in a year or a few, I may never be able to hold your hand or feel your soft baby skin against mine or marvel at every little thing that you do. Thank you precious baby boy, for reminding me again - (not that I have ever forgotten) - just how precious and special every moment is with you.

Loving you more and more each day.

Thursday, November 17, 2011

Tia's message for you

Morning my precious pumkin. Last night your sister Tia brought her journal to me, she had written something on your behalf and asked me to post it. Mommy had to fight back the tears like never before. This is what she wrote, pretty much hitting the nail on the head:

Hi I am a T18 baby, considered not to live longer than 18 months. I am a baby who was born with holes in my heart and something wrong with my lungs. I am a baby that is very strong. I am a baby with almost no immune system. I have no pallet in my mouth - I have a cleft pallet and will probably never talk. My feet are clubbed and my hands are a little bit bent. I have a curved spine and my hips are out of place and will most likely never be able to walk. I never know when I am going to say goodbye to my mommy and daddy and the rest of my family but I am sure to enjoy every moment I have with them. I am now nearly 19 months old and the hole in my heart has closed. I still have a valve that doesnt close that causes lesions in my heart. I am almost on my way to crawling - well in my terms anway - and I cant wait !! My daddy tells me everyday what a big boy I am and how strong I am getting and I think so too. My hands, arms and legs are always busy, i think I may even be getting some muscles :)

Well now you know me, I am a T18 baby and I have a story to be told.


I am so so proud of your sister. Out of all of them she is the one that has battled the most emotionally - or at least shown it the most. They all love you dearly.

You have been doing really well the past few weeks, only really battling with the heat terribly, but thank you to some very special angels, we are able to buy an airconditioner for you so that life can be a little more comfortable and bearable.

We have started taking evening walks with you and boy do you love it. No-one can tell me you dont understand, we notice that you do. Lets put it this way - you normally spend your days in just a t-shirt or only your nappy because it is so hot and you cannot regulate your body temperature, but just before we go for our walk just to be on the cautious side I put some pants on you.  You just know we are going on a walk and you get so excited, you arms and legs just get going and you become so verbal - its just too precious. Needless to say your sisters keep fighting about who is going to push you :)

So all in all, even though for the last three nights you have been a little restless, you are doing really well.

Love you sweet pea

Tuesday, November 1, 2011

and .............................. wheeeeeeeeeew breath out

Hello mommy's precious little bumkins. It all just seems so ..... I dont know actually, but all I can say is wheeeeeew breath out .....

You see my little angel when I was pregnant with you, the doctors told us that you would never make it to full term and most likely be stillborn or that I would miscarry - you made it full term. The night you were born they told us that you would most likely live for 1 hour and no longer - you lived longer. They then gave us two days - still you lived longer. Then two weeks - you proved them wrong. Then 18 months maximum - and Woooooooohoooooo you are now 18 months and 3 days old. Yet again my sweet pea - you have shown your will to live, your will to love and your will to learn - you have surpassed ALL doctors expectations - you have even put smiles on their faces and made them think again and I guess you could say, you have allowed them to believe. You continue to put so much meaning into our lives and continue to teach us so much - things that we would otherwise never have learnt .... and for that I will be eternally grateful.

Although we know our time with you is limited and as hard we try not to, it is never far from our minds, but you have taught me to have faith and to cherish what is now - so although I do most definately look to the future at times, I will always cherish and live for now, live in the moment.

On another note - you are doing awesome, in fact I would go as far as saying you have never been better. You have soooooo much energy, talk the hind legs off a donkey, squeel when you want to, you have even learnt to say no to your sisters when they irritate you - with a real uhuuuuuuhhhhh and when they irritate you some more you kind screetch it out - just love it. You also play with three of your toys on the play gym and not only the one and it always amazes me cause you never seem to look at them, but you seem know exatly where they are so that you can it them with your rattle - or should I say bash them :-)

Tan has taught you to play roll over - she rolls you over a few times and then sings to you and you have picked it up rather quickly. Although you dont roll over by yourself, you try - and you get as far as rolling half way onto your tummy and squishing your face in the blankets, but cant seem to get your arm out from underneath you - so thats your next learning curb. It is just so delightful to see you this way, always smiling and laughing and even getting cheecky - but thats okay you are allowed to - shhhhhh dont tell your sisters that :-) they might think they can start being cheecky - ha who am I kidding, they are already cheecky !!!!

Love you pumkin pie !!!!!