SAM...MORE THAN A CONQUEROR: Happy Valentine's Day.....

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)

Tuesday, February 15, 2011

Happy Valentine's Day.....

...to all you lucky folks who got to celebrate it. How'd we celebrate? With three helpings of vomit, of course! Still, I mustn't complain - I did get spoilt with flowers and chocolates. On Saturday afternoon Chris got a bee in his bonnet about us going for sushi - WITH Sam! I was so not keen, even though it had been almost two years since we'd last gone out for sushi (not taking into account the once or twice we'd done take-away sushi, but just not the same). By Saturday Sam had gone three days without throwing up so Chris eventually twisted my arm, we loaded every toy/book/rattle into Sam's bag and looked prepared to last at least forty-seven days out in the wild as opposed to the mere forty-seven minutes it took us to drive to the restaurant, gulp the sushi down (after first dropping one of only three pieces of seared tuna on the floor in an effort to not mess soya sauce on seated-on-my-lap Sam while maneuvring loaded chopstick to mouth - how I could do with an extra coupla cm's on each arm) and drive back home! Yip! You read right - FORTY-SEVEN MINUTES! Must surely be some kind of record? Still, even though Sam complained through most of it and Chris looked like a sadly misplaced Jack-in-the-Box having to keep getting up to fetch whichever one of the things Sam had thrown down, it did sort of feel like an accomplishment that we'd given it a go.

Yesterday morning we were off to UCT Private Academic Hospital for a follow-up appointment with Prof F. Sam was great on the way there, fell asleep after driving for just two minutes so the day looked like it was off to a good start. However, the moment we entered the consulting room he basically moaned the whole time. Thankfully, all looks good as far as the surgery and recovery goes which I could finally start seeing myself in both Sam's usage of his right leg and increased urine flow. In fact, whereas it would take me just one nappy change with all his "dribbling" to get an ample amount of urine to test every week, it now takes me almost the whole week as he wee's less often (than the previous every two/three minutes) but with a much stronger flow.

Leaving the hospital did not see the end of Sam's mood and he cried all the way home. We were literally about two minutes away from home when Meghan's school phoned to say she'd been throwing up, so had to make a detour to first fetch her. Got home, gave Sam a bottle and some lunch. A few minutes later he burped and out came the first eruption, all over the bedroom floor. Few more minutes later, now crying from the upset of having vomited, out came the second...all over the lounge floor. And so the day continued with our Joyful Smurf. Meghan at least was feeling a bit better by the afternoon and thinks it might have been the Valentine's Day ice-creams they all specially ordered at school which, she says, were extremely rich. In keeping with the mood of the day, Sam was especially difficult trying to get to sleep last night which is when the third eruption happened but thankfully the carpet was spared this time....as it all landed on ME!

Today has, so far, been pretty uneventful with Sam being a precious little angel and fast asleep for the last hour. Tomorrow is physio again and Thursday our appointment with the orthopaed which I am so looking forward to, to find out what we can do to help Sam's little left foot which might in turn, help him walk better and sooner. The story surrounding his foot is still very much uncertain. When he was born the foot was turned inward and upwards at an almost impossible angle. We originally thought it was a club foot but after Dr duT aka "Vaatjie" (orthopaed - feet, etc) sent us for x-rays they actually found that there is no extra bone, etc in the foot so an official clubbed foot was ruled out. Then, with the initial diagnosis of the tethered cord we thought that might be the cause but when the, otherwise normally formed, right foot started turning in as a result of the tethered cord we could plainly see the difference. So his little left foot is simply, unexplainably deformed and I am not sure what one could do about it as the actual angle of the foot corrects itself with stretching and pressure but the little extra "bump" just is what it is. Roll on Thursday!