SAM...MORE THAN A CONQUEROR: The most painful snack EVER!!!

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, October 22, 2010

The most painful snack EVER!!!

Up until recently we suspected that Sam had extremely poor hand-eye coordination as he could not seem to lift an object, mainly a food item, to his mouth which meant whenever we wanted to give him a snack we would have to hold the chip or cookie while Sam, paintstakingly-slowly, "munched" away. I even mentioned it to his PT. However, when he developed his "chew-on-anything-and-everything" habit he seemed to have absolutely no difficulties holding the blanket/feeding-towel/paper/sock/shoe, etc to his mouth and so it became quite apparent that our little smurf was just a little lazy - why do it myself if there's someone else prepared to do it for me? So we decided to test our theory and put his favourite snack (cheese puffs) in a bowl in front of him to see what he would do and sure enough, after a few moments of utter bewilderment he lifted a chip to his mouth and took a bite. The first few attempts were rather shaky as after each bite he would let the chip fall, but he's become much more experienced now (even though that little angulated thumb still occasionally gets un unexpected nip). I can say for sure that he is NOT loving this new push of independence and it either seemed to affect the flavour of the cheese puffs or caused Sam some unexplained form of pain, if these pics are anything to go by...

Really Mom? Is this totally necessary? You know how I hate change!!

Well this is what I think of your idea! To my amusement though, after emptying the bowl of chips onto the floor and mushing them around on the carpet a bit...he actually tried to pick them up and put them back into the bowl again (something I've been trying to get him to do with his shapes bucket for ages).

Sam is still keen to tolerate some time in the crawl-position, although usually collapses after trying to move more than one or two hands forward. But he'll stay in this position for ages, with a little rocking thrown in every now and again.

This (to our posture's dismay) is still his favourite thing to do at the moment. And of course it makes so many activities more accessible, like unpacking cupboards, chasing the cat, kicking the ball (which he's remarkably good at).

The two-headed "monster" which came by on Wednesday evening to terrorise our family! No, I do not know what inspired this idea, nor do I want to know :-)

For the news that we (thankfully) did not catch on camera...you'll understand why soon. On Sunday morning we decided to go out for an early breakfast and took Sam's bottle along to at least keep him occupied for the first five minutes of the meal. Sam promptly finished his bottle and immediately started with his insistent jumping. Ordinarily we dissuade from jumping straight after a bottle, but what Sam wants to do...Sam does. So the jumping continued and eventually our food came. I gave Sam a tiny bit of my flapjack to try and distract him from the jumping...but alas full bottle + reflux + jumping + gag reflex = EPIC ERUPTION! Sam's entire bottle came spewing out all of myself, Sam and Mugg & Bean's floor. And we couldn't just get up and leave because our order had only just just arrived. So they politely brought me a bucket of water with a rag to try and clean what I could of the partially-digested nestargel formula off my dress and moved us to another table. It just had to happen though - I am surprised it took this long.

Sam saw a urologist on Wednesday who is debating with the neurosurgeon whether to do a something-something urethrogram prior to Sam's surgery (tentatively scheduled for the first week of December). We are seeing Prof F on the 22 November again to finalise everything.