Sam. Conqueror. Overcomer.

On the 15th May 2009, Samuel Christian made his way into this world...two month's premature and in severe respiratory distress. Within hours, Sam was diagnosed with Rubinstein-Taybi Syndrome - a very rare congenital disorder, of which little was known. The diagnosis together with the immediate challenges Sam faced to thrive became our core focus and it was with joy and thankfulness that we eventually brought Sam home, after nine weeks in the NICU.

As time pressed on, it became obvious that Sam's development was falling behind that of his RTS peers. Shortly before his 5th birthday Sam underwent a brain scan and it was confirmed by a paediatric neurologist that in addition to Rubinstein-Taybi Syndrome, Sam also has Cerebral Palsy related to his premature birth, as well as Autism.

This blog chronicles our journey through these challenges...
Our world has crashed, been blown apart.
This can't be happening....why us? Why now?
Your fragile life shaken before it could barely start,
How do we get through this...please, Lord, tell us how?

Drowning in our sorrow, waiting for answers that just don't come.
Our baby "special needs"? It simply can't be true!
The heartache overwhelms us, we're left feeling cold and numb.
The diagnosis tells us little - these children are so few.

But then we finallyget to touch you, to see your precious face
And all the heartache and questions fade, replaced with love and pride.
It's obvious from the very start you're showered in God's grace,
And with His love and guidance, we'll take this challenge in stride.

When once we couldn't pronounce it, Rubinstein-Taybi's become our norm.
When once the future seemed dark, we now welcome the journey as having an RTS angel brings lessons in unexpected form.

Our world has crashed, been blown apart!
This IS us.....right now!
We've been blessed with a gift, so precious from the very start. How do we get through this? Here's how.....
By believing in a God, so merciful and great,
By trusting that He's right beside us as we journey through the narrow gate.
By believing His love for us is not determined by a human frame,
By trusting that we draw Him near by merely calling His name. This precious baby we asked God for,
Prayed he'd be perfect and complete.
And, as Samuel means "God hears", He's laid His answer at our feet.

(Nicky de Beer : 27/05/2010)

Tuesday, October 6, 2009

Kingda Ka

People often refer to challenging times as being on an emotional rollercoaster....well if challenging times were rollercoasters, we just did a couple of rounds on the Kingda Ka (one of, if not the, highest roller coaster in the world). So, it all started on the 25th September....Sam went for his Rotovirus and Infra-6 vaccinations. We were told that he would probably experience a little bit of a fever, but I was also warned that the later a Rotovirus vaccine is administered the more severe the side-affects, taking into account that Sam was 20 weeks at the time when he should have had it at six weeks.....we braced ourselves. (We had to wait until his drinking improved before he could have it). Sure enough at 11pm on Friday night Sam's temp went up and he was generally crabby and miserable. The following Saturday he battled even more than usual to drink and also vomitted so we started him on some Hydrol. By Tuesday he was still not drinking and was extremely phlegmy...he was also coughing and gagging alot. So, after some advice, I changed his formula from Infacare Reflux to Nan HA but Mr de Beer did not like the taste of the Nan AT ALL....and still drank as little as possible. In the space of 24 hours, from Friday to Saturday , Samuel drank a total of 110 we decided to take him to the GP, who could not find anything wrong with him. Saturday afternoon, after throwing up again, we took him down to the ER as, thank goodness, his paediatrician was on call. After a scream-filled examination and threats of having to admit him, Sam's paed told us that Sam has a viral infection. He also felt that I changed his formula unnecessarily and thought I should change it back to the Infacare...much to poor Chris' dismay - Chris has being buying Sam's formula in bulk for the month, which he'd done on the Friday when I changed it to the Nan HA off Chris went to Pick 'n Pay, boxes of formula and slip in hand to change the Infacare. Then, after Saturday, off we went again, Nan HA and slip in change back to the Infacare. We must look like a couple of first time, blundering parents I am sure...and to be honest, that's how I feel. I really thought, despite all the advice about the various challenges we were going to face, that surely after almost five months I would have felt a little more confident that, if nothing else, at least I was feeding him right. But every time we think we've found a way to overcome a problem area, our success is shortlived.

Anyway, other than that, Sam has had two physio sessions already, with yesterday's being the most recent...and he screamed blue murder throughout the ENTIRE session. But, a small victory, his therapist can already feel that the band in his left foot is a little looser, which is great as it means we might be able to avoid the plasters. But Sam still has LOADS of work to do and he is not the most willing little patient let me tell you. Although, in his defence, he is not well which might have contributed to his complete horror at having to roll on a ball (which stood up like a ten-storey building next to him), lie on his stomach (boy does he DETEST this), have his hips rolled up to his chest (no, his hips DON'T lie)...the only time he calmed down was after Cathy swung him back and forth for a while on his tummy, but even that didn't last long. So the session finally ended up with him crying so hysterically that he threw up on her. Needless to say, next Monday's looming session is already giving me anxiety attacks.

Where we are today - Sam is drinking much better - yah! Still not great, taking into account that Sam's seven-week-old friend, Janke, drinks 150 mls bottles at a time compared to his 85 mls...but maybe that's why he only weighs 3.3 kgs compared to her 4kg+...but I am so relieved when he finishes his 85 mls that he could have just polished off a whole litre of milk. He is also losing his hair - yikes! That's like his trademark and gets so much attention when we take him out anywhere. I cannot imagine what he is going to look like bald (is he too young for hair transplants?) Hopefully his new hair grows quickly - one good thing is being able to wash that baby shampoo off properly because, quite frankly, I don't think it was intended for such a thick mop of baby hair.

On Thursday we are off to his paed but before that - it is big brother Luke's birthday tomorrow and we are going to venture out for a bite to eat...should prove entertaining, if nothing else. I am just surprised that none of our neighbours have called the police or child welfare on me yet because you would think I was abusing him 99% of the time with the way he screams...but hey, at least we know his lungs are healthy :-) And then, along with Friday comes....OPERATION DUMMY!!!! Samuel refuses to suck a dummy. We have tried at least five or six different dummies, but he either spits it out or gags. I am determined to find a dummy that he will suck on this weekend, if its the last thing I do (okay - maybe not the last, but still.....). It's basically the same process we've gone through with his bottles and most recently, his formula. Never mind that by now we can open up our own secondhand baby shop with all the items we've bought that just doesn't work for him. So, stay tuned to find out how the eating out, paed's visit and dummy hunt went.


  1. What a rough week you've had! It is easier to be second-time parents when you have a kid with special needs, because at least you know a little what "normal" should look like...but it's still very hard. And I agree we all end up feeling like first-timers again! Natalie got into the therapy routine with toys that had lights and music...I'm sure you have those, but just want to suggest you use those to try to distract Sam while he's on the ball, etc.

  2. hey chris and nicky come down for a visit and tehen we,ll all help babysit the little angel and you can go for a nice long walk on the beach.thinking of you

  3. Big Hug to you all, esp Sam. You are enduring lots of things. He is enduring a lot!

    Have you tried the cherry dummy with Samuel - they are tiny - smaller than honey dummies. I think we got them at Baby Boom. Also tried loads of dummies with Matt and that is the only one he liked.

  4. Thanks for all your encouraging words everyone...believe it or not, we have tried the cherry dummies...he is just not interested.