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, November 25, 2014

To Risperdal or not to Risperdal - Part 2

So it's a funny story...well maybe not so much funny as humorous. Okay, maybe not as much humorous as WHAT.WERE. YOU. THINKING...ISH...Y(?)

Still lost with the return of our bashing-filled nights and increasing number of behaviour issues (now having added teeth-grinding to the list) I asked Doc Paed if he thought the Risperdal could be the cause of much of our issues and whether I should try weaning Sam off it. Surprisingly Doc Paed's reply started with "Perhaps the Risperdal should be upped, not stopped..."

WHAT? NO!!! A million times NO! I'm still coming to terms with the original prescribed dose and the mere fact that my 5yr old is even on an anti-psychotic medication. Mmmmm...about that 'original prescribed dose' though. You know, the one that I independently decided to decrease to the recommended dosage per weight in the always-studied pamphlet, as opposed to the dosage prescribed by the qualified, over-efficiently experienced paediatric neurologist. And which independently modified dosage was based on an almost 4kg lighter lil smurfy dude!

So, increased Sam's dose of Risperdal to what was originally prescribed and, although we've had one or two iffy hours occasionally, sleeping on the whole has improved. So mom doesn't always know best...who woulda think it!

The headslapping and irrational reaction to people moving around him remains, accompanied now with the teeth-grinding as mentioned, but they seem a little easier to tolerate when one's had some sleep xxx

Sunday, November 2, 2014

To Risperdal or not to Risperdal

I think we're close to a new record here...Sam is nearing one and a half hours of non-stop bodybashing in desperation to get himself off to sleep. And the only change in this evening's routine I can pin it down to is the fact that he had his bath before his dins, instead of after as usual, thanks to our wonderfully efficient powers-that-be choosing a Sunday evening to be the headstart of loadshedding. I thought it best to give Sam his bath before the water in the geyser cooled too much as the only thing worse than Sam having his bath at a different time would be him not having it at all. So instead of the usual 30-45mins of bodybashing we're doing double time. Yay us!

Another new record and, at least a celebration-worthy one, (I think) would be that for the first time in over a week Sam pee'd in his nappy today.  He will sometimes have his morning wee in his nappy, but even then has held it in until we take him to the potty.  But aside from the occasional morning wee, we are basically just using one nappy a day which usually gets binned bone dry. Here's why there's a bit of concern regarding what would usually be a mind blowing accomplishment for a child with Sam's challenges...it seems as if Sam is now afraid to go in his nappy. So I have to make sure I take him to potty regularly otherwise he holds it in for hours. Here's how that gets even trickier...as mentioned here before, Sam does not sit on anything unfamiliar to him. And by unfamiliar I mean something that is not a very regular part of Sam's daily routine. Let me give you an example, during the week we very seldom go anywhere as a family. But over weekends we will travel as a family in Chris's car which has a kiddies chair in it but because Sam does not sit in that chair every day, each weekend's travelling is as traumatic for him as if he were being placed in that chair in that car for the very first time in his life.  The first journey or two he is so petrified that he can barely breathe and just hangs onto the sides of the seat as if he were dangling dangerously over the edge of a cliff. Eventually by  Sunday he'll chill enough to shakingly (yes, really) hold onto a book. And then it's mom's car again for 5 days and we're back to square one! So getting Sam to use a public toilet is not (and I fear, never will be) an option. On Thursday I had to run a few errands and take Sam in for a scan en route as well. We were in the car for at least 3 hours, during which time Sam drank a bottle. When we got home his nappy was completely dry! This evening he was sitting on the bed with me and all of a sudden frantically grabbed his nappy and gestured towards the bathroom. I was beyond flabbergasted...it was the first time he'd indicated to me on his own that he wanted to use the potty as opposed to me just taking him every hour on the hour. When I opened his nappy there were two or three little wet drops...he must have suddenly realised (for whatever the reason) that he needed to be doing this standing up :D

Never in my wildest dreams did I ever have imagine that Sam would not only be potty-trained by 5yrs old, but within ONE WEEK! I mean HALLO!

And certainly worthy of a second mention (especially as the first one was a Faceboast) while sitting schooling with Sam one morning, he breezed through 48 flashcards of the 50 I had presented to him for reading. One super chaffed mom here :)

Okay so onto the scan...the aim of which was to determine whether the little mass of tissue in Sam's scrotum was the died-off remains of Sam's sole surviving testicle or rather something else, leaving the question as to where that little testicle might be hiding.

So the good news is that the little sac was completely empty (good in that if it wasn't a teste it might have been something more sinister) and that our missing teste was located in the inguinal canal, alive and well, and not yet completely homeward bound to just under Sam's ribs where he and his deceased brother had originally been relocated from. Phew! We will have to attempt bringing the teste down again but seeing as Sam's grommets are hanging at odd angles from his eardrum, I'm waiting patiently for that first ear infection (should come early next year) and then we can group these two procedures together along with a thorough Glaucoma examination under anaesthesia which Sam has not had in 18 months.

And, on a bit of a sad note, I've had to chop Sam's lovely boyband style hair off! He's developed this really unsettling habit of yanking his hair out in handfuls and hitting himself aggressively on the head. At a loss of what might be causing this new behaviour and in sheer desperation to see it end, I hoped that perhaps with Summer settling in it was simply Sam's way of trying to tell me that he was getting too warm under that lovely mop of hair. Unfortunately, although the hair-yanking has obviously stopped, Sam still keeps hitting himself on the head. It is rather disturbing. Since Sam has been on the Risperdal he has developed an alarming number of bad habits and side-effects...but what a Catch 22 situation! Despite the amount of time it takes to fall asleep, Sam does definitely get more sleep than before the Risperdal. But it is still not what I would call quality sleep and is loaded with all these other new issues! What to do...what to do!