SAM...MORE THAN A CONQUEROR: On The Mend

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)

Wednesday, March 16, 2011

On The Mend

By yesterday morning Sam's rash was, thankfully, almost unnoticeable and completely clear by this morning. This is such a relief as on Sunday afternoon it was still quite an angry rash :

and was definitely causing Sam some discomfort. The one and only downside of the now non-existent rash is that we are now back to the old anti-histamine formula of Zyrtec in the morning (for allergies) and Cipla Actin in the evening (appetite stimulant), neither of which make Sam at all drowsy as opposed to the Aterax he was having to help with the itchiness...and which ensured a solid uninterrupted night's sleep each night.

Aside from the rash, Sam was feeling a bit better by Sunday afternoon so we decided to go ahead with a quick bite out to eat for Meg's birthday, together with Aunty Cammy and Uncle Damien. The kids, as always, spent most of the time in the playroom and Sam was determined not to be left out.

Sam "trying out" the trampoline. He laughed hysterically when Meghan and Chrisna were jumping.

Sam trying out the cap Meghan got as a present from Chrisna!

As you would have noticed by now, Sam's hair is very seldom what one would refer to as "neat". The maximum period we can manage somewhat neat hair is for about the first thirty seconds after his bath so I had to take a few quick pics of our handsome boy to prove that his hair is not always on a mission of its own :

Sam L.O.V.E.S Kitty, but Kitty is just way too wary of Sam as she's had her tail, ears and fur pulled just one too many times (not to mention the occasional foot up the bum when Sam's tried to walk right over her and just not aimed too great). Still, the desperate desire for affection gets the better of her and she'll eventually and cautiously creep sheepishly up to Sam, only to be rewarded with the inevitable feet-yanked-off-ground-by-tail move.

Other than the above, Sam is slowly recovering from last week's illness with the exception of his eating though which is now back to where we were over a year ago with him managing a maximum of about ten baby-size spoonfuls of food at the moment. There is still a decent amount of gagging going on but nowhere near where we were this time last week. Fortunately his drinking seems to be almost back to "normal" as too is his tummy. We are still having the occasional throwing up when he gets upset about something - which means that too is back to normal :)

Luke is starting exams next week and we are hoping that, taking his test and task results so far into consideration, all will go well. Unfortunately there has been no developments with regards to last Friday's incident when he was robbed of his cellphone however we were fortunate to be privy to some rather amusing behaviour on Sunday afternoon when, just after 1pm I received a call on my cellphone from "Luke"! The gentleman who had stolen the phone had not even bothered to change the sim card and the person intelligent enough to buy the phone had not questioned at all why there was a list of numbers already in the phonebook and even decided to phone and have a chat with the one saved as "Mommy"!. Except when mommy answered, she just put down but then proceeded to phone again...and once again! I am not entirely sure what she actually wanted but found it quite amusing so sent her an sms/text saying "You are operating a stolen cellphone! Return the phone immediately to Warrant Office L*** at G***** Police Station to avoid further action." I hadn't yet at that point contacted the service provider in case, by some slim non-SA practice, the cellphone was actually retrieved but after said caller's antics imagined her phoning me at like 2am only to have me reminding her for the umpteenth time that she was using a stolen cellphone, so went ahead and had the sim and phone blacklisted. So that was our bit of fun for the weekend! Terribly thrilling..LOL.