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, January 4, 2011

And the doc says......

that he thinks Sam is experiencing a combination of three issues at the moment being

  • Major separation anxiety (I have the nail marks on my neck to prove it from when Chris or my dad try to take him from me). This explains the repeated waking up after he's gone down for the, supposed, night and why, if I put him in the bed, he settles down.
  • The almost anticipated trauma of the surgery added to his already fragile sensory issues.
  • And, perhaps most importantly, he is quite certain that Sam is still in quite a bit of pain, which is why he startles and jerks/flinches so much. He does not think that only keeping Sam on the pain meds for four days was long enough and advised that he can stay on for at least another week.
After trying to find several fairly lame excuses to hang around in Dr B's rooms a little longer than needed (Oh the luxury of air-conditioning), we headed home and immediately I gave Sam some paracetamol. He still cried himself to sleep while we did the carpet-pounding this evening but obviously pain meds aren't going to help with separation anxiety which, like with Meghan (who still cried every morning when I dropped her off at school until the 3rd term of Grade 2) I will just have to see the process through. He did wake up about 45 minutes after falling asleep, I picked him up and lay with him in my arms....he fell asleep.....got up to put him back in his cot (just so I could at least put my pj's on and get Meg to bed) but he woke up straight away....lay with him on the bed again and he fell asleep within minutes, but this time lay him on his own pillow so he wouldn't feel me loosening my grip on him when I got up.

Other than the pain issue, we are trying to get an appointment with either one of the two OT's I was told about by Matthew's mommy and Aunty Mandie, who ever can accommodate us the soonest, to finally start getting a handle on this sensory/reflex issue.

And of course having our temp's sitting at 34deg (93ºF) just helps HUGELY! No matter how much it cools down in the evening though, our house stays as hot as an oven so we're all pretty well baked by now! Gosh...how many days left until Winter?

And, of course, ending on a high note - Sam weighs 8.8kg's!!! I really thought he would've lost a little bit of weight especially with not eating or drinking properly straight after surgery...but it looks like he didn't - how awesome! He's weight chart looks amazing....for the first 17months it stagnates most of the time, but has an occasional spike and then all of a sudden you get this lovely steep incline! Well done Conqueror!
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2 comments:

  1. BrandiJanuary 5, 2011 at 1:57 AM

    We deal with this exact same thing 2-4 weeks after every surgery. I hope things soon get back to "normal" again.

    Unfortunately, the fear of laying flat on an exam table still freaks Nathan out. We didn't sedate him before going into surgery last time because of the risk of his airway collapsing and that's when the fear of laying flat set in. But we keep pushing through and hopefully he will out grow it.

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  2. NickyJanuary 5, 2011 at 9:04 AM

    Oh, poor Nathan. Doesn't your heart just break for these angels sometimes? It's traumatic enough as it is without having to face lying on that table without any pre-meds!

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