SAM...MORE THAN A CONQUEROR: Fievel goes South.....

Sam. Conqueror. Overcomer.

"IN ALL THINGS WE ARE MORE THAN CONQUERORS THROUGH HIM WHO LOVES US : Samuel was born on 15th May 2009, two months early and in respiratory distress. After an initial Apgar score of 1, he was taken to the NICU and placed on a ventilator, together with an undeterminable amount of tubes, IV’s and monitors which made it almost impossible to see the little Smurfie character lying within…slightly blue and only three apples high. Sam was diagnosed within 24 hours with Rubinstein-Taybi Syndrome, a scarce medical advantage as, due to the rare occurrence of the Syndrome and the limited medical literature on it, many individuals are only diagnosed well into adulthood and some never at all. The page-long list of medical/health issues related to the syndrome, while vital in providing a prognosis and compiling a care plan, took a backseat, however, as Sam’s struggle to breathe and swallow became the primary focus of our concerns and prayers, deepened only by the heartache of not being allowed to hold and comfort him for the first ten days of his already traumatic life. After seven weeks Sam was successfully weaned from the oxygen but was still dependent on a nasal gastric tube for feeding, with which he was eventually discharged. Once home, what should have been a precious time to recover from the stress of the NICU and enjoy a relaxed and cherished time together, instead became a seemingly-endless timeline of specialist appointments, therapies, illnesses and surgeries as that page-long list of medical complexities came into play, affecting every part of Sam…physically, neurologically, medically and emotionally. Yet, despite these challenges and an “ineducable” future being predicted when his prognosis was delivered, Sam showed a delightful potential and eagerness for learning. Unfortunately though, this learning potential seemed limited to his cognitive abilities as, physically, Sam’s development lagged significantly behind that of his RTS peers. A week before his 5th birthday a brain MRI confirmed that, in addition to the RTS, Sam also has Periventricular Leukomalacia and Static Leukoencephalopathy (included under the umbrella diagnosis of Cerebral Palsy), which would more than likely have occurred as a result of the oxygen deprivation experienced leading up to and/or during his birth. Thirteen years later and with a number of surgeries and medical procedures which appear to be in fierce competition for their own “page-long list” (which surgeries and their subsequent recoveries have left Sam to face his day-to-day life with a residue of unshakeable anxieties and phobias), the boy you meet face-to-face…with his cheeky sense of humour, unfathomable joy and fierce warrior spirit…make it almost impossible to believe that that disheartening brain MRI and poor medical prognosis are of the same kid. As we begin to navigate this journey with a newly aged differently-abled teenager, leaving behind the little smurf whose fears and discomforts could so easily be remedied with a cuddle on mom’s lap, the anxiety of more surgeries and medical challenges now compounded by the universal fear of every differently-abled child’s parent/s (who will take care of their child once their own time here is gone) threatens to become overwhelming. But then the excitement of a horseriding lesson, the sheer delight of spotting a balloon (especially a hot air balloon) or a super silly giggle caused by simply hearing someone sneeze provides a beautiful reminder of the profound joy and courage these children radiate, despite their overwhelming challenges, and it provides the perfect encouragement and inspiration for facing your own. #samtheconqueror

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)

Friday, March 23, 2012

Fievel goes South.....

...to the ENT at 1:30pm :( I was really REALLY hoping that somehow Sam's tonsils would recover enough to be able to delay removing them but I happened to spot them yesterday ("spot" meaning that I lie in wait for ages waiting for an opportunity to stick my little light down Sam's throat - having a little smurf who cries so passionately, thereby opening his throat beautifully, is not all bad all of the time) but they don't look much different to how they did before the Orelox course. Still, I thought perhaps I'd give it till Monday before making the appointment with the ENT, just in case Sam's system was having a delayed reaction to the antibiotic which might suddenly clear up all nasties over the weekend. Disillusioned much?

Sam did not have a good night though, lots of chokey-apnoea's and a little bit of fluid draining out of his ear so trying to put the whole tonsillectomy thing off any longer just seems senseless. That's unless Dr V is suddenly struck by an awesome revelation concerning a Plan B. It could happen, right? The only consolation, or so I thought, of doing the tonsillectomy sooner than later was that I was hoping to bring in a dentist who could have a look at Sam's teeth while he was under anaesthetic, because there is absolutely zero chance that he would tolerate a normal dentist's consultation. Over the past couple of months, Sam's teeth seem to have suddenly weakened and the one front tooth is almost chipped right down to the root, just from him chewing on his plastic toys, etc. I've been told that its more than likely due to the acid reflux which is slowly eroding his teeth, so I've been quite desperate to find out what we can do to avoid further deterioration. But as Murph would have it, there is not a single dentist at Vincent Pallotti! Very frustrating. So now we'll have to wait until Sam's foot surgery takes place in Aug/September as it's been done at a different hospital which, thankfully, has a dentist or two practising there.

Pushing illness aside for a minute (if only!) Smurf is sporting a new haircut. Nothing fancy, the usual close cut. It would be really great to see Sam with a super cool little boy's style, but for now we have to opt for what takes the least amount of time and attracts the least amount of vomit!

Sam loves using dad's beard as a scratching board - nothing like a little smurf who does his own sensory brushing!

Sam and Fievel - possibly separated at birth???

Since the beginning of OT, Sam's therapists have tried, always unsuccessfully, to get Sam to crawl through little play tunnels or even just to go inside a little play tent but Sam just freaks out every time and usually retreats into defense mode. Yesterday morning at speech therapy, Tanya had as usual set up different play areas in the room, one of which was this little tent. While busy on another activity, before even attempting the tent, Sam suddenly crawled over and without a second's hesitation crawled inside to play. He stayed there for a while, crawled out and then crawled back in again...it was really quite amusing.

How much you want to wager that I'll go bragging at OT next week and then Sam will point-blank refuse to do it there?

So the school holiday has officially begun...barely a half hour ago - it would be amazing if it wasn't almost entirely spent filled with illness and doctors' rooms and the likes, but I know we are not alone, even if it does turn out that way. Many of Sam's RTS siblings, some of them thousands of kilometres away, are battling with illness at the moment. In a warped kind of way, it's almost reassuring - just a few days ago I was quite determined that we needed to sell our house and move into a small little flat or townhouse somewhere, free of animals and gardens and with the absolute bare minimum furniture, appliances, etc to ensure as little chance as possible of Sam being exposed to allergens or germs or anything really. It's almost impossible not to wonder whether you're contributing, albeit unknowingly, to the problem...but with there being no guarantee that it would remedy Sam's immune issues at the moment, it does seem a little drastic....for now at least. Can't promise there won't be a For Sale sign on our front lawn next time a new ailment does the rounds!