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)

Monday, August 3, 2015

The Darkness Cometh!

And by "darkness" I am referring to that depressing, life-halting, germ-yielding, just-plain-dismal time of the year otherwise known as Winter! Bleh. Yes, I am a classic Seasonal Affective Disorder sufferer who finds it incredibly difficult not to succumb to irrational bouts of envy when seeing her overseas friends posting pictures of all things Summer...just can't help it, sorry guys! Thankfully, a little S.A.D. (a rather appropriate acronym, or what?) has been the least of our worries the last Winter or two...but YIKES! did Sam ever make up for it this time round.
A couple of days after my last post, the little dude landed up in hospital with Rotovirus. It absolutely floored Sam, who spent almost a solid week napping his time away...and we're not talking Sam's usual mickey mouse naps of like fifteen/twenty minutes. We're talking like 3-4 hour naps! Yes, really! Then you know for sure that the lil dude's struggling. Sam was discharged the Sunday and by the Wednesday morning we had to make another trip to the ward after Sam woke up sporting a 40.3c temp. I was pretty sure it was the remnants of that darn Rotovirus, hanging on to wreak its last bit of  havoc, but Prof Prof seemed to think it was something new brewing. Nah, I thought. No coughing or congestion...definitely Rotovirus. By 4pm that afternoon Sam was coughing and snotty. #sigh
I tried to manage with some OTC meds for a couple of days, but by the Saturday I had to admit defeat and accept a script for Celestamine. My lack of warrior spirit might well have been influenced by my own coughing and snotty constitution, forming an all-round, family partaking (with the exception of Papa Bear) in some pretty nasty flu. 
It is not unusual for Sam to struggle with sleep and a general sense of being unsettled after a hospital stay - it is the very reason why I try to cope at home with his illnesses before resorting to admission (obviously without leaning towards negligence of course). With the exception of the first night in hospital, Sam slept through every night...waking only to protest aggressively whenever a nurse came in to check his stats. But from the first night at home, Sam battled with sleep...the first few nights found him bodybashing himself around between midnight and 2am-ish, but soon we were back to our old demon...bodybashing anything from 11pm till 4/5am each morning. I don't know how I coped with this before, but this time round neither Sam or I managed the severe sleep deprivation well at all. Last week Tuesday we headed off back to Prof Prof, after almost a week's surviving on just 1-2 hours sleep each night. After advising that Sam's throat was a little irritated, probably caused by a nasal drip, and that his gums were looking a little fragile thanks to him cutting his molars...we headed home with a new script. Yay! Sam's teeth generally take MONTHS to eventually make their way through.  Months with only a couple of hours sleep a night? "Sure, we can do that!" she says laughing hysterically!

Although the meds certainly did help some, I kept thinking back to those night's of blissful sleep in the hospital despite Sam actually being really ill. The major difference between hospital and home was that at home Sam was still sleeping in our bed, smack-bang in the middle to prevent him from hurting himself when bashing, while at the hospital he slept in his own bed. So Thursday we decided to go out on a limb and move house without the actual benefit of a brand new other words...rearrange our bedroom, which in turn meant rearranging almost the entire house! Sam's bed was relieved of the storage facility it had merely become and pushed snug up against our own bed (baby steps). And? Well, with some very light bashing every night around 1am every night, Sam has been sleeping comfortably there ever since.  As much as what he wants to sleep in our bed, being in his own bed is obviously far more comfortable and, it seems, partly responsible for his disrupted sleep.  And of course the quality of sleep I am getting being able to actually relax my muscles without the fear of falling off the 10cm little scrap of bed I was left to rest on each night, is quite delightful too.  Sam's still battling with his teething, his super-flushed cheek and relentless teeth-grinding tells me so...but he is at least getting a decent amount of sleep at night now. And who knows? Maybe the next six years will see us actually moving his bed a couple of cm's apart from ours....the sky's the limit folks.
 And some pics to catch up the last month...the parts which weren't spent sick in bed :
Sam's bestie, Smokey rabbit, and Sam having a moment
On the 18th of July, The Daniel and Friends Fund families were treated by Reach for a Dream to an awesome morning at the Aquarium. Sam was so well behaved and lasted a full five hours with only a very minor meltdown in the beginning when I stepped away for a few minutes.  We were so very proud of him :)

Family snap xxx 
And, thanks to our little germ-fest, with the exception of multiple doc visits and shopping sprees to our local pharmacy, that's really the only exciting stuff Sam's been up to!!! Roll on Summer xxx

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