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)

Friday, March 30, 2012

Potty Leapfrogging

This morning started off quite wobbley...and by "this morning" I mean barely this morning. Just after 12am Sam started emitting some really funky vibratory sounds and then became quite restless and whingey, so we put him in the bed with us (as opposed to where he usually sleeps in his cot....far on the other side of the bed, so "far" in fact that I battle to get our bed made in the morning because there is absolutely no gap between my side of the bed and Sam's cot). Minutes later Sam presented some more funkiness in the way of a rather potent dirty nappy, amidst more moaning and wriggling around which, I was sure, could mean only one thing...his system had finally, and almost expectedly, given in to the stomach virus that was still hounding Meghan up until Wednesday evening (Five days? Really? What happened to the 24hr bug?).

After a couple of gag-moments we decided to top up Sam's Motillium and were in the process of deciding which painmed to give him for the cramps when Sam promptly fell fast asleep. I was pleasantly surprised when by 5am Sam had still not had any more tummy troubles, so I lay in bed to the background noise of heavy rain and what sounded remarkably like hail at one point, staring at the alarm clock while contemplating exactly how long I could prolong having to drag my behind out of bed before going to make up Sam's Pediasure...when the alarm clock suddenly went black...along with everything else both inside and outside our house. What an awesome time for a power outage! Poor Chris got kicked out of bed to go rummage for the gas stove downstairs so I could get a start on Sam's formula. Thankfully, Sam's bottle was ready and waiting for him by the time he woke up and just minutes after drinking his fill, the electricity came back on...and all was right with the world again, especially Sam's world as he sat in front of the tv pushing each and every button while waiting patiently for something to come alive on the screen. Quite remarkable how easily we take for granted things like electricity and all the luxuries that come with it like microwaves, kettles and the rest. But even more appreciated than the return of our power is that (touch wood) Sam still has shown absolutely no further sign of having picked up the tummy bug! I'd be quite happy to sacrifice a week of electricity in exchange for Sam not picking up any additional germs just now :)

Talking about taking things for granted, I posted recently about Sam's apparent awareness of when he urinates and, even more mindblowing, that I have now on several occasions actually instructed him "to wee" and either by pure, freaky coincidence he has obeyed....or, the preferred choice of course, he actually understands what I am saying and is able to organise the correct message from his brain to the correct part of his body, to actually do it. Potty training Sam is not something I have even, till now, begun to entertain. When conquests like walking and talking still present such a formidable challenge for him, how can I leapfrog over them to potty training? Surely the two key factors you need in order to potty train are mobility and communication...but perhaps I have still not quite mastered the art of thinking out of the box where Sam's development is concerned. While Sam might not move and communicate the same way his peers do, he certainly does still get around AND communicates. So, after loads of encouragement from our family (both relatives and RTS) with a little apprehension and a good deal of excitement we went off to buy Sam his first potty...."first" because I just know that with Sam getting it right the first time (on our part) would be almost impossible. We chose the most basic, "neutral" looking potty we could find.

Because Sam has had no experience with a potty or potty training, he had no preconceived fears about its presence in our room on Tuesday evening and I managed to almost seat him blindly on it...where he stayed for a relative amount of minutes just before I bathed him - unfortunately without anything particularly exciting taking place. But the very next time I tried to sit Sam on the potty he completely freaked out...and of course he did, because being placed on a potty involves one particular action/position Samuel no longer tolerates - SITTING! My, almost 3 years old, smurf cannot/will not sit. He does not sit on the floor, he does not sit on a chair - no matter how cute and child-friendly it is, he does not sit in a car, he does not sit on a baby-scale or any other place besides on my lap and (still with some hesitation) in his feeding chair, the bath and his carseat. We have tried every kind of intervention related to OT to try and overcome the problem, I brush him...I swing him incorporating deep pressure and vestibular movements into the motion, but at this point there is absolutely no sign of progress. It's fairly frustrating - I was looking through photo's and found some of him sitting on the floor with his birthday presents last year in May. I do know though that he will get there again...I am not sure how yet, we've basically tried everything we can think of. Very seldom I manage to fool him by doing subtle things like letting the water out of the bath before I take him out so for a few seconds he's actually sitting unsupported in the bath. More often than not the noise of the water gurgling down the drainhole frightens him into awareness or he's little mind is too sharp and he realises what I am doing before the water's out.

Sitting is just such a basic function, isn't it? It is something you just take completely for granted, although a celebrated milestone for sure, not really considered as much of an achievement as walking, talking, etc. But yet, it is significantly missed when its absence limits functioning and basic activities. I spend a great amount of time watching programs and documentaries on special needs kids/people, many of them with conditions which make it impossible for them to sit other than in wheelchairs or support chairs and today, for the first time really, I could imagine how being able to do something as simple as sitting unsupported could make such a huge difference.

Sam's OT and I were again discussing the sitting problem on Tuesday, particularly because there are a number of activities which Sam cannot pay the proper attention to because he has to do them with just one hand while on his knees. Not for the first time Christa reminded me that while Sam's fears are so challenging at the moment, the source of the "problem" is also a completely awesome blessing - being that he is so BRIGHT and so wonderfully aware of everything that is going on around him and while his little mind spends a lot of time soaking up memories of all the things that have caused him distress or trauma, it also spends a great deal of time soaking up things like knowing his numbers, learning his shapes (he recognises a heart, star and triangle already), learning colours (he recognises blue and brown), zipping through his iPad like a pro, being able to start and stop video's on my cellphone, knowing the actions for songs like "Heads, Shoulders, Knees and Toes" and "Two little dicky birds", being able to follow verbal instruction and increasing his signing vocab as well (having fairly mastered "more" and "duck" Sam is now slowly mastering - daddy, baby, teddy bear, chair and bottle).

The signing achievements are really quite delightful - there was a time when I was convinced signing would never be an option for Sam but over the past few weeks he is not only showing more of an aptitude for it, but on a few occasions (with yesterday's ST session being one of them) he has looked down at his hands mid-play and moved them around as if trying to figure if he knows a sign which might express what's on his mind at that's really quite fascinating.

Random Pics :
Sam and Dad jamming to some 'tunes...

Meghan being.....err.......Meghan (?) before the tummy bug hit!

Not sure how impressed Papa Smurf will be with me sharing this one...but Sam has a fascination with teapots. Go figure! I just couldn't help but indulge him....

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