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, September 21, 2012

Straitjackets, Melatonin and some serious v-wording

So exactly 20 days ago we moved house. And exactly 20 days ago we turned an already anxiety-filled and sensory turmoiled world upside down for Sam.  I knew Sam would go through a period of being unsettled and super-di-dooperdi defensive...but boy was I clueless.  A little more clingy? For sure. A little more vomit? Would it be Sam if not? A few extra meltdowns? Heck yeah! Even more disrupted sleep than usual...bring it on! But....and that's a smurfinormous big ol' BUT...hours-upon-hours of freaky nighttime spinning from side-to-side? Well that one just completely threw us over that exceptionally fine line between coping and grappling for those lovely white straitjackets.

I won't deny that there have been one or two days during the last 3 weeks when I shed a solitary tear while trying desperately to bring Sam around, amidst screaming and vomit, from one of his emotional overloads while listening intently for the doorbell indicating that one of our, now too-close-for-(Sam's)comfort, neighbours had finally resorted to phoning either the police or child welfare or both to please come and rescue the poor child next door who was obviously being barbarically abused by his mother. Surprisingly no such rescue has yet taken place, despite an hour-long meltdown last Friday morning. And yet all of these hiccups would have been so much easier to cope with if it weren't for the even more stressful nights.  Before the move, the evenings at least provided an hour or so to relax in front of the computer or tv and then grab a couple of hours sleep (albeit it sometimes disturbed) to rejuvenate for the next day. By Monday morning, after less than an hour's total sleep, the situation had become desperate.  Sam's OT has been keen for me to take Sam to a very well-known neurologist paediatrician as she is worried that Sam has reached a level of anxiety and sensory disarray that cannot be overcome without the help of medication.  I have been extremely hesitant to resort to this as, as fiesty and challenging as what this little smurf is, he has the most awesome spirit and I would hate to do anything that might change his personality or break this spirit.  Dr B once told me that he believed the key to Sam's sensory problems was firstly patience and secondly acceptance that, to a degree, they would always be there...with which I totally agree. But by Monday morning I had to consider the affect all the sleepless nights and anxiety-filled days were having on Sam so off to the neurologist we went. 

The consultation was not one of our most charming...Sam vomited all over the place the second the doc touched him, which sent Chris back to work covered in a little eu de puke. What we did manage to take away from the appointment was the possibility that Samuel's spinning was more a frustration-filled reaction to not being able to reach deep sleep and then stay there, as opposed to a frenzied attempt at self-soothing.  We were given a prescription for Choral Hydrate to assist Sam in reaching deep sleep but were told by the pharmacist that it has been completely removed from the market.  The doc then faxed through another script yesterday morning for a nightly dose of Melatonin, with which I have no argument against as I know many of Sam's RTS siblings use this, as well as 5mls of Urbanol.  Mmmm..Google? Of course! Only to read that Urbanol is predominantly used in patients with Epilepsy and also has some cautions regarding use in patients with respiratory disease and apnoea. Now I don't know if obstructive apnoea is relevant with that caution, but Sam sure has had one or two respiratory issues in his life.  So, in utter uncertainty whether to try these meds or not, I sent a Whatsapp message to Dr Sinclair just after 5pm  :

Sidestep : I sent a Whatsapp message...not a polite email or professional phone call...a rather forward infringement on his "personal space" even I have to admit.  And it is not the first time I've done it (there was a brief panic moment at the beginning of the year when I thought Sam might have come in contact with Measles). And within five minutes, Doc Paul had replied.  By now, you all know how much I appreciate the rather few "Wow!" doctors out there so I can assure you that having such a quick and (seemingly) unoffended response to a seriously sleep-deprived and insanely emotional mom who is literally counting the minutes away to the possibility of another crazy night with a certain little smurf, is beyond invaluable :) There are just too many docs who would've asked that I rather bring Sam in instead, for fear of missing out on a consult fee.

Anyhoo, Doc Paul okayed the Melatonin but was also wary of the Urbanol. So come 7pm I readied Sam's Melatonin, even more delighted at the fact that it has no real taste and dissolves super easily in a little water. Within half an hour, Sam was yawning and satisfyingly sleepy - Woo Hoo! Success! Really? Of course not - Sam first started shaking, then started crying and then started vomiting...and vomiting...and vomiting. Definitely not reflux because reflux, unfortunately, doesn't come with such a prologned warming-up warning. Knowing of so many children who are doing quite well on Melatonin I didn't even bother to read the possible side-effects, not least of all because the pharmacy had stuck their label right over it.  But when the v-wording started we tried to peel what we could off the container and could just make out that Melatonin can, although rarely does, induce nausea, cramping and vomiting.  Oh Sam...tsk tsk...the relentless lover of all things rare, unknown and one-in-a-million (or would that be 300 000) chance worthy.  So another restless, crying, spinning and largely sleepless night was enjoyed by all *bangs head against wall*

Amazingly enough, the only thing that hasn't really been hugely effected by this whole moving upset is Sam's eating. He had a few wobblies with most of his therapies which were mostly spent with his arms tightly wrung around my neck.  There were two really entertaining sessions week before last though, one OT and one ST, where Sam vigorously demanded that both myself and the relevant therapist, Christa and Tanya respectively, sleep on the floor which is a command he loves watching on his "Verbs with Milo" app on the iPad. It would have been terribly funny to watch, I am sure, and the fact that both therapists were so animatedly accommodating just made it all that more amusing to Sam.  Although there was one rather challenging session, also suprising is that Sam's physio sessions have remained relatively unchanged.  Sam is doing loads of "walking" at the moment, mostly to keep those tendons nice and flexible in the hope of avoiding that surgery Sam's orthopaed mentioned but also because Sam quite enjoys being on his feet now.  I no longer have to hold him securely around his torso, but allow him to take his full weight on his feet with just my hands on his shoulders providing a little bit of pressure and the occasional safety catch when he does lose his balance. 

Sam has also been making some new sounds..."th" quite often as well as "sssss" and even made a startling almost-proper-sound on Monday evening which sounded something like "Buff" (obviously referring to himself of course). Even more fascinating is the number of signs Samuel has taught himself from the Baby Signs app on his iPad. His physical development and sensory processing make-up might be all over the place and stagnating, at best. But that little mind is running full steam ahead and just soaking up every bit of mental stimulation it can.  I can just see him in 30 years time....sitting at a rather fancy desk, happy-flapping and spinning around on his chair atop a vomit-spewn carpet and half-chewed nameplate sporting the words PROFESSOR SAMUEL "SAM-THE-MAN, SMURF"' DE BEER.  Hehehe!

While it seems as though Sam The Conqueror is fast becoming a monthly blog, it is most definitely not intentional.  With any luck and a whole lotta prayers we'll get Sam back into the swing of things before I forget my own blog addy. But till then, this is what we had to resort to today :



Makes for not great quality posting and a really sticky keyboard but a post nevertheless  :)


Waiting for Tanya at speech therapy on Thursday - such a big boy. Doesn't matter the mag was upside down, he would just grab one from the stack next to him, turn it around and throw it on the floor.



And big boys need big boy lunch....like yummy french toast


Has to lean in super close just in case he misses something


Sleep or no sleep, he's just too darn cute xxx

Wednesday, September 12, 2012

Just a short post....

.....to say that we are still here but everything is broken at the moment...including my pc and, most distressing, including Sam...