Happy Happy birthday my precious little boy !!! we love you more than words could ever say !!!!
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.
Still loving all the attention from your sisters - one really loved little boy !!!
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
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.
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
complaining
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
complaining
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 !!!!
Tuesday, March 12, 2013
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 !!
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 25, 2013
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 !!
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 !!
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