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...
SAMUEL - COMPLETE IN GOD
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 happening....to 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, September 25, 2013

Syncing Sinking

Sam was less than 24hrs old when he was diagnosed with RTS and round 18mnths when he was diagnosed with SPD, following some really peculiar behaviour like screaming with (what seemed like) pain when sunlight touched his skin, gagging if his milk was too warm or, more problematic, not warm enough or even if a drop of it happened to fall on his tongue before he started sucking and many other bewildering little oddities. I accepted the SPD theory but can't say I put nearly as much effort into researching it as I did with the RTS, mainly because it seemed pretty self-explanatory and I knew that at least some sensory issues were shared by a number of Sam's RTS peers...and don't many of us have one or two sensory issues of our own anyway. At twelve years old, Meghan still wears all of her socks inside out because she cannot bare the feel of the ribbing against her skin, washes her hands, opens the bathroom door and then flushes the toilet last before running out so she doesn't have to be in the same room and can't handle tight clothing on her arms.

In hindsight, I should have afforded the SPD the research and knowledge it required. I can't help but wonder if I'd taken the time then, I might not have made more informed decisions about how I care for Sam.  For a long time I have presumed that almost all Sam's challenges are purely RTS related so started feeling a little puzzled as I watched several of Sam's younger RTS peers recently mastering many wonderful milestones.  Not comparison....merely observation.  We were still reeling in the celebration of Sam's walking progress, the blog post barely published before it all came to a sudden halt.  Not only does Sam now avoid his walker like the plague, but he is back to his normal petrified self...he won't even stand propped up against my legs without arching his back and throwing his arms up in fear.  One morning this past weekend we watched Sam, first with amusement, trying several times to manipulate his bottle into his mouth. The amusement was quickly replaced with something less pleasant as it took Sam, at the very least, 10 attempts to successfully bring the bottle to his mouth. His struggle to co-ordinate his arms, hands and mouth was really obvious and quite strange because he seems to more easily grasp the finer motor tasks like building puzzles or gripping a pencil. Anyway, this time there's no blog-induced, light bulb moment. No suddenly remembered bathroom pirouettes which ended in a bloody lip and traumatised regression, no painful surgeries being performed on my watch, no ironingboard-like drops to the floor...heck, I've been watching the kid like a hawk (well as hawk-like as your eyes can be at almost 40) and nothing sensational has happened to cause this current regression. So I joined an SPD Group (or two or five) on Facebook, which has been hugely therapeutic...corresponding with other parents who completely "get" your child's behaviour and associate it with the sensory challenges the kids face, as opposed to presuming that spoilt behaviour and manipulation is mostly the problem, is huge....HUGE!

I finally went out and bought a copy of Carol Stock Kranowitz's "The Out of Sync Child"' in the hope that I can try and sync this sinking regression...although the book has now found its way to the pile of dvd's, web links, documentaries etcetera etcetera I've been trying to work through for some time now. It defintely needs to stay at the top of my To Do list...uhhm, or somewhere close to the top at least.

A while ago, before Sam's walking progress, Sam's OT mentioned the possibility of a wheelchair to me, for Sam. It's largely the motivation behind me suddenly pushing Sam on the walking issue (mmm...could this be THAT lightbulb moment...too much pushing? Nope, me thinks not). The thought was a little saddening, especially because Sam's orthopaed doesn't feel any of Sam's physical issues should prevent him from walking.  But nevertheless, after some dodgy incidents with me trying to get Sam into and out of trolley seats while on my own, we spotted a wheelchair which looked like it would suit Sam quite nicely...and went ahead and bought it. There might have been a tear or two shed on the way to the car but then it was time to just suck it up, accept that it's not the snuffing out of hope but merely an adjustment of what to hope for. By now we've used the wheelchair many times and it works so much better than a trolley or pram. Sam sits higher so there's no fear involved when walking through a shopping centre with loads of people whooshing passed him and it handles really well with just one hand.  

In the iFix store - getting the iPad's screen repaired yet again, 2nd time in 8 months.
Ouch! Lots of dazzling lights though.
 
 
And some random pics to catch up with the more trivial smurfy news :




Apparently colouring is really hard work and requires regular naps throughout
 
 

I saw this really cool swing idea on the SPD page, so gave it a bash...and?

Apparently Sam feels quite comfortable in his little cocoon :)
 

We celebrated Mia's 1st birthday
 

And, yip, the kid still luvs his swinging.
 
 

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