SAM...MORE THAN A CONQUEROR: Elvis has entered the building....and the family!

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)

Monday, December 19, 2011

Elvis has entered the building....and the family!

Nah! Just kidding!

So Pasty Smurf seems to be, albeit slowly, on the mend. He is still coughing and late this afternoon his cough was sounding very croup-like again. But thank goodness we have had no v-wording for two solid days now (and, No, I am not sending that out into the Universe as an invitation). I am so disappointed that, with all the chaos at last week's paed appointment when Dr B weighed Sam, I didn't even ask what his weight is now. I do remember that his height is now 84cm which is not too shabby at all because that's like a 3cm growth in about four/five months. Also, after showing Dr B how severely Sam's sensory defensiveness is at the moment, Dr B did a delicate examination of where he thinks Sam's right teste is sitting and, although not 100% sure but pretty darn close, he thought he located it sitting much further out of Sam's groin area than we anticipated - almost kind of under Sam's hip bone. Anyway, Dr B is quite convinced that that little teste could definitely be causing Sam some discomfort, at best, if not pain with certain movements and positions. So, boy are we counting down anxiously until the 20th January to, hopefully, see the removal of the teste having a profound effect on Sam's SID.

On Sunday afternoon Sam seemed to be feeling a little better so we ventured out into the big, wide world...or more specifically down to Aunty Cammy's to meet the new addition to hers and Uncle D's family. So folks, meet Elvis....

...who loved playing with Sam's stacking rings almost as much as Sam does,

and had Sam beside himself with excitement.

Between Sam and Elvis, they kept Uncle D busy fishing the stacking rings out from under the couch.

Random pic of Sam and Dad

And please do note Dad's snazzy new haircut...cut and styled by moi! I'm thinking of opening my own little hair salon, Salon de Smurf...just as long as all the customers are only wanting military-style do's. Although I'm quite sure I could manage quite well with an emo-style cut (not even sure if there's even any cutting involved there) and have extensive experience with the haircutting of squirmey-wormey-type little people. I've asked Meg several times if I can't experiment a little on her hair too, but would you believe she's just simply refusing. Tsk Tsk.