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)

Wednesday, March 14, 2012 to join me?

I have been rapped across the knuckles by one or two people for not having updated Sam's blog recently, but the truth is there's really been nothing remotely blog-worthy to post about. And, yes, I know in the past this would not have prevented me from subjecting all-and-sundry to my senseless ramblings but we just seem to be caught in this yo-yo-ing time bubble which, I can only imagine, must be pretty tedious to have to read about.

The last two weeks have been filled with much of the usual same old-same old, with the exception of an additional joint-attention speech therapy session last week Tuesday, a follow-up visit to Sam's neurosurgeon on Wednesday and Meg's eleventh birthday yesterday.

So the joint-attention speech therapy went relatively well. Tanya was pleased to see that Sam remained engaged with Meg for the entire thirty minute session, which is quite something because quite often he flits from one activity to the other at regular thirty second intervals, nevermind thirty minutes. Meg just brings out an entirely different side to Sam, completely playful and just so utterly little-boyish as he tackles her and giggles hysterically - it's pure joy to watch. The only minor downside was that Meg, for some completely unexpected reason, was suddenly overcome with uncharacteristic shyness (possibly as a result of Tanya video recording the session) and did not "verbalise"as much with Sam as she does at home. For those of you who personally know Meg, this is quite unusual for a little girl who will quite randomly and without any ado break into song and dance in the middle of a restaurant or shopping centre, or demand that I waltz with her in a doctor's waiting room or something equally unreserved. Regardless, Tanya seemed satisfied that we are still moving in the right direction with Sam which is all we can ask for. About three days ago Sam started making a new sound, sort of like a car sound, and seems to be exploring more with what noises his mouth and tongue are capable of producing.

The follow-up with Sam's neurosurgeon was relatively unremarkable. The consultation started out relaxed enough with Sam banging happily on the desk and pointing out to me every chair he could catch sight of (have I mentioned that Sam has an almost impossible chair fetish) but the second APF moved in closer for an actual examination, Sam initiated his defence mode (arm in "shielding" position across his chest and face) which made APF's task a little more difficult. After performing what examination he could around Sam's defensiveness, Prof F said that he felt all was still going well with Sam spinal cord and reflexes, etc. He did remind me of the exceptionally rare, but still note-worthy, chance that the spinal cord can re-tether when it is repaired at such a young age but felt that, as it would present with the same symptoms it did in the first place, it would hardly go unnoticed. We did agree that an MRI conveniently coupled with any upcoming surgeries in the next year or so would not be a complete waste of time.

Sam's general wellbeing over the last two weeks has been all over the place. Something positive or encouraging happens and I make a mental note to blog about it but before I get a chance to hit the keyboard, something less positive and perhaps a little worrying happens and then I kinda lose the spirit of mentioning the "good" thing because you sort of ask yourself "What's the point? I am just going to have to mention the not-so-great thing afterwards!"

For example : About a week ago, just out of the blue, I decided to try Sam on some Stage 3 baby food and low-and-behold without a single gag or tiny bit of resistance, he polished the food off. I gave the Stage 3 food for another day or two and he carried on eating it without any hesitation. In the meantime, he's developed this really bad habit of insisting on eating from my plate, without obviously being able to understand that it's not always something he'll tolerate. But the one day I had a PB&J sarmie, Sam gestured pointedly at my sarmie so I gave him a bite...and another bite...and another bite and eventually had to make him his own sarmie, which he ate about ⅔ of. The next evening he had a bite of my McD's burger, patty and all, and swallowed quite easily. I was too scared to celebrate too loudly because we all know my friend Murph by now...and, just as expected, by Monday Sam was not only no longer tolerating the Stage 3 baby food anymore, but even gagging on his normal ultra-pureed food. And the reason? Sam is in the throws of coming down with something nasty again. On Saturday night he battled with a snotty nose and problems swallowing while he was asleep, on Monday morning he woke up with a temp just under 38 Âșc and by yesterday his tonsils were looking quite remarkably sago-pudding-like (Chris's creative description) with the left one sporting about three of those little pus follicles already.

I decided not to rush immediately to the doc, because I already know what course of action he's going to advise...but instead am just praying frantically that somehow that darn Zithromax will kick-in or kick-butt against whatever relentless viral thing it is that is wreaking havoc on Sam's immune system. I am starting to worry that something is being overlooked...something serious, because I just find it quite challenging to accept that Sam's immune system is THAT compromised that it cannot rid itself of this virus. I do, at the very least, weekly urine analysis' on Sam's urine and realised yesterday that the last "normal" results were at the end of November last year. Unfortunately, come tomorrow, my holding out for the sake of an answered prayer will begin to teeter dangerously on the side of negligence and I will have to make that appointment. But still a few good praying hours to join me?

Love him so much that it sometimes feels like a physical pain in my chest - so wish I could make him healthy...that's all....just healthy.  

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