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)

Thursday, June 19, 2014

So about that further comment upon completion of processing...

...we received the official report from the neuro-paed this morning. Sam's newly adjusted diagnosis now reads Rubinstein-Taybi Syndrome, Cerebral Palsy and secondary Autism.

I knew it was coming. I attended a lecture a couple of months ago given by JP Maes on the Maes concept for physiotherapy in kids with CP or similar neurological disorders. I was tagging along as the very minor contribution to the "similar neurological disorders" group. Within minutes into the lecture both the information being shared by JP as well as the little boy being focused on in the  documentary, had me sitting up straight. There were just too many similarities between this little boy and Sam at that age. That, the information I Googled on periventricular leucomalacia and Dr neuro-paed's comments during last week's examination on lesions caused by brain bleeds in utero, abnormal reflexes, etc had me comment to Chris on the way home already that she was thinking CP.

The report also advised that Sam was aggressive and seemingly frustrated...and that he certainly has been for the last 2-3 weeks. So much so that we had to make like a hermit for pretty much most of that time. And yesterday we found out why at Sam's dentist appointment. He has three teeth which have decayed all the way down to the nerve and, according to the dentist, he must be in severe pain.

Aaaahhh...the joy of verbal limitations.

About two years ago Sam chipped his front tooth on some sushi (plastic Nemo in the bathtub). It was noticeable but not too problematic. A few months later the tooth was further chipped during an intubation. Over the passed few months Sam has progressively ground that tooth right down to the gum with his bottom tooth and about a week ago it started turning brown. Hence the dentist appointment which, thankfully, lead us to the two 'brown' molars at the back which haven't even properly broken through yet. So on the 2nd July we'll be doing our second and hopefully last anaesthetic for the year. A bit of a wait and not so wonderful theatre time at 11:30am, but what can you do  *shrug    

Sam's current infatuations are carousels and flags. (Thanks Mr Tumbles) The flags are an easy enough hit, a short drive just through town usually has Sam exclaiming in excitement. Carousels? Little bit of a more challenging find they are. Luckily there is a small 3-horse carousel in the same centre as the dentist. Walking passed it was an absolute squeal (literally) for Sam on Monday, which was a public holiday and ensured that the carousel was constantly being ridden by other kids, to Sam's delight. As with most of Sam's infatuations, he prefers viewing them from a distance and shudders in fear if you get too close.

Sam was so well-behaved at his dentist appointment yesterday and allowed a thorough examination of his teeth, albeit through some harsh sounding but luckily unproductive gagging. Seeing as he'd frantically started signing carousel the moment we entered the parking lot, I promised him a stroll plastit after our appointment. What a bummer!  Mid-week morning meant no carousel-riding kiddies for Sam to watch :(

My makeshift homemade 'safer' Sam-friendly variation on a flag...he seems happy enough!



xxx
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1 comment:

  1. CindyJune 24, 2014 at 9:56 PM

    Wow Nicky! I haven't been keeping up with blogs (hardly my own either) so I am just seeing this news and amazed! I didn't realize there was any question about his spine, and I can imagine your incredulity at not being aware, what with you being the parent and all. Hugs and prayers to you Nicky. I'm sure so many things make more sense, but it doesn't make it any easier.

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