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, April 16, 2014

Shake it up baby now....

...twist and shout!

I have no conscious recollection of Sam ever having heard that song but somehow it must be playing over and over in his head because the second his pushchair rolls through the door of any shopping mall that's precisely what happens. We make sure that every shopping trip is accompanied by the ipod competing with the usual mall-raucous to belt out Heads & Shoulders and other equally delightful kiddies songs, which tunes are accompanied by a little dude whose entire body shakes, flaps, twists and occasionally squeals...not always response to the music. And when I say entire body I mean it in every essence of the word....head,neck, arms, fingers, wrists, legs, feet and even the palm-tree-like tufts of hair on his head each go off at their very own rhythm. It inevitably creates a reaction. More often than not it's a friendly smile or lighthearted utterance about him being happy, etc. But sometimes it's a plain and undisguised stare, the kind where the deliverer of said stare glances out of the corner of their eye, quickly looks straight ahead with obvious feigned indifference and then just as you're about to pass from their view they do a sudden Ace Ventura-style headwhipping to take a better look at the blur of movement being barely restrained by the straps of his stroller. It's a fascinating scenario. I've only ever met two other kiddo's with RTS and although we've never strolled through a shopping mall together, I don't believe they are quite as twisty-flappy as Sam which makes me wonder if there are any other RTS kiddo's who do it and how their folks deal with the attention. Some days I just ignore it, some days I play a little private game where I try turn my head at the precise moment I think the Ace Ventura-style headwhipping will take place. Some days, like today, I'm just not up to it. So when we headed down to the mall this evening  left the ipod at home. And? There was twisty-flapping galore. It ain't the music on the ipod he's flapping to so it's gotta be the music in Sam's head :)

So on Monday we had our  appointment with new Neuro guy. It was an interesting process just getting to the hospital. Sam's bowels had been a bit sluggish so I'd increased his Movicol for a day or two which means, in turn, that there'd be a day or two of 'cleansing' when the Movicol kicked in. Would it be our life if that day of cleansing did not happen on Monday? Absolutely not. Sam had two relatively large nappies early in the morning so I felt we'd be free from the chaos always caused by Sam needing to be lied down for a nappy change any place other than my bed. We left the house en route to Aunty Justine's, a total journey of about 8 mins, in which time Sam delivered the ultimate cleanout I thought we'd already conquered. Rushed inside and worked through a tense but manageable nappy change saved only by the fact that it was being done on a bed at least. Then in the following eleven/twelve minutes max it took to the hospital, yet another cleanout was delivered! Seriously? Granted not as explosive as the previous one but without the safety of a bed to clean it on. So I drove to the very end of the parking lot, completely isolated from any other car where hopefully Sam's freaking out would not be heard by anyone. Arrived just just on time for appointment, ridiculously flustered. Luckily the 37 mins we waited gave me some time to catch my breath and cool down. New neuro guy is really nice so 37 min wait was quickly forgiven. He gave Sam the best possible examination you can perform on a squirming protesting little dude, we chatted about scheduling another MRI and then he asked me to please bring in the original post op MRI disc for comparison, which posed a very slight problem in that there never was a post op MRI. Seriously? Well better late than never right? Even though it's approximately 3yrs late. #eyeroll

So leave docs office and make my way through the door only to come to a grinding halt. The sunshine we'd arrived with had been replaced with a strong wind and drizzle. Firstly, I very VERY seldom wear skirts. I had a skirt on. And not just any A-line and particularly flairy skirt (I so wished I'd done the ironing on Sunday night like I'd originally planned). And secondly, I'd parked as absolutely far away from the door as I could. I awkwardly maneuvered myself and Sam to the paypoint, trying to maintain my decency, shield Sam's summer-clad little body from the elements and pay my parking card at the same time. Grabbed the coins from the change drawer and dashed to the car, unlocking it and unfastening Sam's straps while looking in my bag for my paid ticket. The ticket. Nowhere to be found. S.E.R.I.O.U.S.L.Y!

I hadn't taken it from the machine.

Refasten Sam, relock car and dash back to the paypoint like a, now,frizzy-haired loon. Of course the ticket wasn't there, that would be too easy. Luckily the security guard remembered me being there just moments before and scooted around the entrance, thankfully finding my ticket caught in some plants where it had blown. Amidst mouthfuls of wayward hair, uttered my eternal gratitude and offered a repeat display of comedy departure. Yes...seriously.

The hospital phoned today to say that Sam's booked in on Tuesday already which is a little short notice and only at 10am which brings with it it's own set of challenges trying to calm a starving little Smurf who doesn't understand why he's being deprived of his morning bottle an porridge. Let's just pray that it's all made worthwhile by an MRI which clearly shows that there has not been a retethering of Sam's spinal cord.

And sleep? Well those glorious 14 nights we were spoilt with a couple of weeks ago don't seem to be making a comeback any time soon. We're back to 4-6 hours of thrashing around at night, mostly caused by an impossibly congested nose despite Sterimar and Iliadin sprays, eucalyptus misting and Karvol drops on the linen. Last night though Sam seemed to have an intense, unbearable itch all over his body. And tonight were doing continuous apnoea's.

I tried to sneak some time on the computer to have a go at pimping Sam's blog a little but as you can see, it did not go well - just as I started Sam woke up. So please excuse the rather random design for now.

On Sunday we were invited to an Easter egg hunt by Iris House where Sam had such a good time and no matter how excitedly he flapped and 'danced' the only looks he got were those of love...

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