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, October 23, 2013

Not a natural chain of life

Good morning my precious.

Mommy has a very grateful but heavy heart today, and I know that no matter how "on guard" I am or try to be, thoughts creep in and last night was one of those moments.

I was watching a movie called The Christmas Shoes and it was about two families who, through sad circumstances cross each others paths. One where the father spends all his time working and pretty much none of his time with his family and the second family who spend all their time together and the mother has a heart condition which cannot be fixed. The family prepare themselves for the inevitable and "mom" says goodbye to her family, a very heartbroken husband and her very young son.

At this moment these thoughts started creeping into my head and as strange as it sounds, my first thought was that this is how it is supposed to be. Parents are supposed to gain their wings before their children and not the other way around. Not me having to let you go, but you having to let me and daddy go and living your life to the fullest. Growing up and going to nursery and primary school and then onto high school. Experiencing falling in love for the first time and treating your girlfriend like a queen, just like daddy does me, and finding that special lady that you want to spend your life with and me crying tears of love and happiness the moment your bride walks down the isle and I know its that time when I need to let go and allow another woman to love and cherish you. Getting to see you experience the joy of parenthood and me experiencing being a grandmother to my only son's children.

It saddens me to know that this will never be, for our lives will take the course of an unnatural chain of life. You will never grow to have a physical verbal conversation with me, - yes you converse with me and yes its awesome. I wish I could understand what you say and what goes through your mind. You are at the age where we should be running around after you playing hide and go seek, teaching you to kick a ball and making sentences and painting and drawing, all the things a 3 year old would do.

Yes as much as you are a blessing to us and as healthy as a trisomy child can be - my mind still has some of those thoughts and not that I alway show it, but there are those moments when my heart cries out, in actual fact it sobs, BUT I know that you are our special blessing from God, and as hard as it is, it is most rewarding and if we had to make a decision, like the one we made on Old Years Eve in 2009, where daddy and I decided that how you would come into this would be up to you and God alone - we would most DEFINATELY make the same decision again.

Somehow I think you knew I was feeling this way because early hours of this morning you woke up and wanted to know nothing but being in my arms and cuddling in bed with me, no crying or moaning, just snuggling into my neck and sleeping peacefully and soundly.

Love you more than words could say my angel !!

Monday, October 14, 2013

A few long and not so happy months

Helloooooo my gorgeous little prince. Yes yes I know I havent been here in a while and partly feeling really guilty and completely frustrated. Frustrated because something seems to have changed on this site and I battle to upload photos and to actually write to you because things just seem to become "Sticky" and I cant save or change anything

Anyway before I get entirely frustrated again, let me carry on while I can. the last few months have not been the easiest. Something happened to your sleeping pattern and up till about 6 days ago, we had kind of been lacking sleep for a while and we just couldnt seem to figure out why. During the day you were fine but at night you were cranky. We increased your feeds thinking you were hungry, but that just made it worse. We decreased your feeds thinking maybe you were getting too much and were uncomfortable. We thought maybe you were teething, constipated, or even just being a kid .... nothing seemed to work .... I think this is the first time that I have been entirely frustrated because we just couldnt figure it out. Daddy and I then decided it was time to take you to your doctor, maybe he could figure it out because heck knows we were completely out of ideas and enough was enough.

I have spent many a morning driving to work and finding myself crying and not knowing why. Now in hindsight I guess it was frustration and exhaustion. Yay something, we found something, not sure why we didnt register but yeah, I guess thats what exhaustion does to you. So your doc was happy with everything except for the fact that when he pressed lightly on your tummy you kind of flinched and drew your legs up. So straight away he diagnoses and acid build up. Well yeah it figures cause the one night or should I say early hours of the morning I connected your tubes and you pushed up all this acid. But it didnt concern me becasue it was only one night and it has happened many times and its never irritated you so we sort of ruled that out.

Daddy and I were so relieved it was nothing serious and that we could go home and give you some meds for a few weeks to resolve it and whaaaalaaa. BUT that wasnt to be, you stayed niggly and daddy and kept on saying to ourselves, give it time, the meds need a few days to work. Four days later was enough and we were back at the doctor. So by now your chest was a little iffy, but pretty much normally what it is, so nothing to worry about but your doc wasnt taking any chances. We got you straight onto antibiotics and for the next two days you were back to my happy little pumpkin. It didnt last very long but those two days were pure bliss. By Thursday night you were snottly and phlegmy and it was too late to get you to the doctor. I toddled off to the pharmacy as we always have a back script of meds for you ..... well normally we do ..... that wasnt to be either. At this point I just wanted to sit down in a pit and hope that it would swallow me there and then. Fortunately we have a wonderful pharmacist who actually gave me all your nebs meds without a script - Thank you Heavenly Father for your angels - Mommy pumped you with the nebs and you most definately werent happy but you had a relatively good night, and when I say a relatively good night, you still woke up and were still niggly but no where near what it had been.

Friday to Sunday you were fabulous and back to yourself again, and then Monday rolled on - NOT SO GREAT - so off to the doc again and this time treating you at home was just not going to happen. By this time I just could not control any tears flowing down my face and quite frankly I just didnt care who saw me or what people thought - I think sometimes being tired has its benefits - A whole lot of tests were run, bloods, xrays, mucous, urine, stools and and and although it sounds a heck of a lot to parents with "normal" children - yeah you guessed it - its NOT normal but its OUR normal. FINALLY a diagnosis - bacterial pnuemonia and oesophogitis - an infection in your oesophogus and let me tell you this was not pleasant - this infection made your breath smell like your insides were rotting - but thanks to another angel of yours - yep your doctor - it was nothing that two different antibiotics 4 times a day couldnt fix !!

So we are back home and so far so good - lets keep it that way my sweet little boy - dont think I could manage another crappy week for a while. Love you to the moon and back.

Wednesday, June 26, 2013

Busy and tiring times

Hello my precious :)

Wow where to begin .... the last few months have been a little on the hectic side both at work and at home, especially at home with all the birthdays that we have had. But thats all done and dusted now - well at least for a while it is.

We have been through a few tiring and difficult days the last few weeks and it started off with the company that makes your melatonin changing the formula of the stuff and it just was not working for you anymore, which means no sleep for any of us and unfortunately it took us about a month to figure this out ..... yes we were basically zombies by then :) The only reason we figured this out was when we wanted to order a few more bottles, the pharmacy informed us that we could only order 1 as the formula had changed and would only be okay for a period of 30-40 days .... jip you guessed it .... light bulb moment .... you wont sleep, formula has been changed .......... ting ting ting ............ put two and two together. FINALLY we had a reason as to why you wouldnt sleep. So we decided to try tablets and just dissolve them in water and ............ whalaaaa back to normal. Yay you are sleeping again and now our bodies had to readjust from getting no sleep to getting more than enough sleep - so we were pretty much tired on a permanent basis.

When things settled down and you were back to yourself we decided now was the time to catch up on your immunisations - time for the MMR and the pnuemochocal, yes its late, actually very late but better late than never - well so we thought.  I was stressing my butt off and making sure that the clinic had oxygen for you in case you cried too much and have difficulty or even stop breathing and we definately did not want to go that route. Turns out you didnt even cry, not even an ouch ........ such a big boy for mommy and daddy. All was well, until a few days later. All you wanted to do was sleep - 24/7 only waking up for feeds. Now this is most definately NOT you :(  We decided to be on the safe side and take you for a check up with your Paed and to our surprise there was absolutely nothing wrong. Doc said your chest, throat and ears had never ever been so clear - WOW - so what now, just ride it through and see what happens? Another week went by and still, sleep sleep sleep is all you wanted. You can imagine by now that daddy and I were pretty much on the worried side.

A day or two later, you started with a runny tummy and NOTHING worked, not even the questrain, and normally just one dose of that you and are right as rain. I also noticed you had a bit of a discharge, so off to the doc again. On hearing that you had a discharge with  the runny tum, he admitted you straight away.

Six months of no hospital and we were back again.  All kinds of tests were done and most importantly a sonar on your kidneys to check that there was no kidney infection or tumors of any sort.

A few minutes into the sonar, after checking all your other organs the tech asked me to turn you to your side. Nothing strange about that ................ uh ja ........... thats what I thought. So anyway a few more minutes and she promptly announces that you only have one kidney - the left one is just not there. WHAT !!!! - I guess I shouldnt be surprised as it is most likely a part of the T18, but then again there are lots of people that only have one kidney.  So as any normal parent would ask - what is the draw back to only having one kidney. NOTHING,  absolutely nothing, the only time it would be a problem is if you go into renal failure and then you wouldnt have the other one to back it up - but normally both kidneys will go into failure at the same time. Well now that is reassuring - NOT.

In any event, you have managed well for the last three years and the doc sees no reason to panic. Shoo (wiping my brow).  Almost a month after your injections and only now are you finally begnining to be yourself again- wide awake and playfull during the day - some nights too - but at least we are happy and getting some sleep.

It always amazes me that although you really feel iffy you always manage to smile and make mommy smile. You really are my precious little angel.
 Yesterday we also had to have your grommets redone. Yes that means anaesthetic again - and you know how we feel about that - but we need to keep you comfortable and pain free. So, except for your heart rate going down a little and as your aneathetist would say "giving her grey hairs" all went well. She made sure all your calming meds were given before they woke you up and Whalaaaaa no crying little boy after theatre - it was awesome.

Aaah, so upward and onward - for some more good times.

Love you so much baby boy !!!!

Monday, April 29, 2013

3 years old today !!!!!

Happy Happy birthday my precious little boy !!! we love you more than words could ever say !!!!

Thursday, April 25, 2013

Almost ..... just a few more days !!

Hello my precious little almost 3 YEAR OLD J

Wow, how time flies, the last three years have without a doubt been a heck of a roller coaster ride – but mostly a gracious and wonderful blessing from our heavenly father.

When I was just 20 weeks pregnant with you we found out that you had Trisomy 18, something we had never heard of. This would mean that you have an extra 18th chromosome in each and every single cell of your little body. I remember so clearly, we were in Woolworths and I received a call from our doctor and he told us that you would probably abort yourself and if you were born you would never live long than a few hours and would be completely disfigured and disabled and my response to him was, -  this little boy is my son, my flesh and blood.  How could I abort him, it is not my decision but the decision of our little boy and our father above.

There was no need to think, the answer was an outright no. This little fetus inside of me was a life, regardless of the diagnoses. Daddy and I did our research and found lots of negative things and sad stories, but we also found a lot of success stories too. As we researched, you grew and grew. Even though you were still in my tummy, as a family we nurtured you. The girls would talk to you and put their hand on my tummy so you could feel their warmth and love. Daddy made recordings of all of us talking to you and everyday he would put earphones around my tummy and play these messages to you over and over again.

We put our faith in God, along with lots of hope and prayers, and decided that should you be born we would leave it up to you and God to decide for how long. We also decided that we would do comfort care and smother you with love. We knew our decision would test our belief, faith, values, our minds and most of all our hearts. On 29, April 2010 you were born and your condition was below that fine red line. It was the hardest decision that we had to make but we stuck to our choice of comfort care and it was a hard and emotional first few days, with lots of prayers, a wonderful and supportive neonatal team and very little medical intervention – just pure unconditional love. You pulled through and proved us all wrong. You fought and chose to live and continue to fight and choose to live

Yes, it’s been hard, yes it’s been emotional and we all have our emotional moments and boy they get bad and tough. But know we don’t regret our decision, when you smile at us or hold our hand, hold your rattle and hit your toys with as much force as you can muster up, or push yourself just that one step in your walking ring or give us a little laugh, these little things that most parents take for granted, make it all the more worthwhile.

You have such a pureness about you that we all strive to obtain some or other time in our lives

Look at you now, in a few days you will be three years old ...... who would have ever thought.

Tuesday, April 2, 2013

I still would .........

Hello my gorgeous little pumpkin

I just love waking up to your morning smiles, which was quite a surprise on this particular morning. The night before you were a little bit on the mizzy side, nothing serious but then at about 9 in the evening you just decided it was time to cry.

It was so heartbreaking because you could hear that you were in pain and we just couldnt figure it out. The pain meds took about an hour to set in and in the hour that it took to work, mommy had to give you some oxygen. Well you were not impressed about that at all, but we had to do what we had to do. Fortunately it settled you and all was good.

The other part of this all, like your sister said, such a beautiful moment in such a sad moment .... you see my sweetheart, you have never cried tears, and at this point in time your tears were falling ...... and it broke my heart to no end :-( but made my heart happy that you actually do have tears ...... I know it sounds so strange for some people but for us it is pretty much another little miracle ......... little for others but big for us :-)

Other than that, the next morning you woke up all happy and playful, no vomitting, no crying ..... just my normal happy little boy and still my normal happy little boy. But in any event daddy is taking you to the doctor today for a check up, just in case. We are battling with constipation again so maybe its a good thing.

Still loving all the attention from your sisters - one really loved little boy !!!

Tannyth was away for a few days so the
two of you have been playing catch up and by
the looks of things having such a lot of fun .....
typical teenagers with all the photos,
but I definately dont see you

Tia and Diana also take every opportunity they can get to take photos with you, and I am glad. Building memories is just so important

 Heck you are even playing twister with them ..... just too precious for words.

On another note, mommy was going through facebook earlier today and I came across a poem that was written, I am not sure by who but this poem just says it all, and this is how it goes.

"If before you were born, I could have gone to heaven and saw all the beautiful souls I still would have chosen you

If God had told me, "This soul would one day need extra care and needs"
I still would have chosen you

If He would have told me, "This soul may make your heart bleed"
I still would have chosen you

If He had told me, "This soul would make you question the depth of your faith"
I still would have chosen you

If He had told me, "This soul would make tears flow from your eyes that could fill a river"
I still would have chosen you

If He had told me, "This soul may one day make you witness overbearing suffering"
I still would have chosen you

If He had told me, "All that you know to be normal would drastically change"
I still would have chosen you

Of course, even though I would have chosen you, I know it was God who chose me for you"

So yes my sweetest of angel pie's I still would have chosen you !!!!

Love you ever so much my baby boy !!!!

Monday, February 11, 2013

Not what we expected

Good morning my precious little angel

The last two week or so has been a little on the rough side, not for you, but for mommy and daddy. We took you for your appointment at the spinal surgeon and came away totally heartbroken. I guess at the end of the day we went with expectations and those expectations were not met or even close to.

In no way was the doctor mean or unhelpful in fact he was quite the opposite. Anyway we had to take you for xrays so that your spine could be measured to see what percentage the curve is at.

Daddy and I were so excited cause finally we were going to have a brace made and help correct the scoliosis. We were sitting quietly in the doctors office and he was measuring and examining the xrays and then asked to examine you, which he duly did.  After all of this he explained to us, and I say explain because he put it in a way that we could understand  - not all these medical terms that some doctors make it difficult for people to even comprehend what they are saying. In plain and simple terms he let us know that the curve in your spine is now at 60%.

Firstly, the one major thing that counts against you is your weight. You are now only just over 7kg and it has taken us three years to get you there from 2.5kg. The doctors will only conisder a brace for a child once they are 10kg and over and the chance of you getting a brace is pretty much slim to nothing. He explained to us that the type of scoliosis that you have, causes your spine to curve to the right and should you have a brace, it would be designed to put pressure against your rib cage which will in turn put pressure on your lungs and your breathing capacity will really become a lot less than what it is now - and cause severe uncomfortability for you - NOT want we want.

He also explained that they would normally do surgery and fuse the spine with  ......... i suppose you would call it screws that will expand with your body as you grow but in your case you would never survive the surgery and that is not a chance we are going to take. Like daddy says - keeping you comfortable is our first priority and at the moment you are comfortable - no complaints whatsoever.

I guess the part that really broke us was when he told us that the ideal position is to keep you laying down - WHAT  - NO WAY !!! - I am never gloing to just let you vegitate. Firstly we cant do that because you will then suffer with your little lungs even more and we will probably spend every second week in hospital with pnuemonia. Secondly - what quality of life is that for you and then thirdly even if we wanted to try and do that there is just no way YOU would allow that. All you want to do is sit and stand - obviously with our help of course. Every time you are laying at an angle in our arms you pull yourself up to a sitting position - you WANT to be on the move. You wiggle and kick your little legs as if to say GO GO GO!!!

The doctor did phone some other ortho doc of some sort to see about having a foam cast made which could also help with your spine. It wouldnt correct the scoliosis but it would definately slow it down. Again it was not good news. You are still far too small for one of those as well. There really wasnt much else that the doctor could suggest or do. I just sat there battling to hold the tears back and when the doctor walked out to the next room I mumbled to daddy that this was not what we wanted to hear.

We left the doctors rooms totally dejected and heartbroken, not knowing what to say or how to react. The drive home was quite and felt like an eternity - even though it is only a 40 minute drive. My heart and my chest felt so tight - this was the first brick wall that we had hit and I am sure there will be plenty more to come. Daddy and I have taken a really hard knock on this, even to the point that daddy is really sick at the moment - the colds that we have managed to keep at bay for so long have just come full force. Our bodies feel like they have been trampled over by a thousand horses. BUT we will not let this deter us !!! Your little spirit and determination gives us hope and keeps us going and although we are thankful every day, its times like these when we see your smile, energy and determination that we become more determined, when your  innocence and unconditional love melts our hearts and we know we will do everything that we can for you.

Love you ever so much my angel boy !!

Friday, January 11, 2013

New year, new beginings

Helloooooooooooo my precious precious little angel pie

Christmas has come and gone yet again, except it was a very quiet one, just you, me and daddy. All your sisters were away and they missed you terribly and I think you missed them too. I think even for you the house was just way too quiet.

Before Christmas we managed to spend some time with your uncle Kevin in Durban and still I cannot believe how wonderfully your little body reacts to the Durban air. You always just seem to be so much healthier, you sleep better and just so full of lilfe - not that you arent always full of life - somehow it is just a little different. Our plans for the day would go entirely up to you and what time you decided to wake up and how resilient you would be for the day. Most days you would only wake up between 9 and 10, much to the girls dismay becasue all they wanted to do was get to the beach every morning.  I wasnt complaining becasue for once we werent rushing to get anywhere - it was wonderful.

 So this time at the beach there wasnt as much wind as there was in April and you were atleast able to play in the sand a little and dangle your feet in the water - only if you were sitting on daddy's lap - the second that little bum of yours touched the sand ........ well lets just say you were not happy. The only thing we really had to contend with was the heat and the light, the fact that you cannot regulate your body temperature and have photosensitivity, makes it a little difficult for you. So after about an hour or so on the beach you pretty much have had enough. We cannot complain, at least we are able to build those memories with you and experience these things that most people would consider normal and nothing really special.

Wow I cant believe another year is behind us - how time flies. On the one hand I am not complaining because you just seem to get bigger and better as time goes by and then on the other hand I just want time to stand still so I can have you with me for the time that a child is supposed to be with their parents :-( Anway not time to think about that, now its time to be happy. Its a new year which means a new start, healthy and happy and a time to move forward.

We have got you back onto solids again and so far so good - hold thumbs that it stays that way big boy - Then we have an appointment with an orthopeadic spinal surgeon later this month. NO we are not looking into operating, we are going to go and see the doctor about getting you a little back brace. We are not sure as yet if you will be able to get a back brace, but we are positive and holding thumbs that only good things can from our appointment. Now, I dont know Dr Sneakers but your peadiatrician does and he says that Dr Sneakers is one of those doctors who just prefers not to operate and that he will always look for alternative measures before having to go to the extreme, and when speaking to his receptionist, I told her that I really hope he can help us because you are still so little and have T18 and her response was well the doctor is used to dealing with really little syndrome babies - WOOOOHOOOO this gives mommy so much hope and positivity to know that his patients are small syndrome babies. So thumbs up !!! and you bet ya they are going to stay up !!

In any event, the plan is to get you a brace so that:

We can try to stop you scoliosis from worsening
We can try to strengthen your lower back and tummy muscles
We can teach you to sit by yourself

It is going to be a lot of hard work for both you and us - but hard work we are definately looking forward to. At the end of the day, as long as we know we have done the best for you and explored all  our options and that you stay comfortable and happy - that is what matters most.

Love you my little peanut !!