SAM...MORE THAN A CONQUEROR: Same procedure as last year...

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)

Sunday, December 21, 2014

Same procedure as last year...

...Same procedure as every year, James :D

Oh I did love me some Dinner for One on New Year's Eve. Back in the daexhausted PVR's and the like were around, we'd recortook on the ol' VHS cassettes and wSerioush happy er and over until we thought we couldn't bear to ever see it again...and then Christmas came around again and you found yourself keeping an eye out for it on New Year's Eve . Of course I wouldn't know if it's been aired at all over the last five years because that would require something of a scheduled twenty minute 'downtime' which is really little more than a hilarious joke here in Smurfville.

And I did find myself thinking of that "same procedure as every year, James" as we prepped for our Stilbaai trip this year. ..with me being the tipsy, slurring, lion-hopping, vase-drinking, heel-clicking James (unfortunately all due to sleep deprivation as opposed to alcohol) and Sam being the poker-face Miss Spohie, seemingly unaware of the havoc she was causing. Without fail, Sam manages to come down with something every December and, with the exception of last year, has us preparing to cancel our visit with the family at the last minute. It usually happens round the 19/20th when his paed is just going or already has gone on leave, just for that extra bit of drama. This year we thought we were being super sneaky by leaving for Stilbaai on the 13th already #nodssmugly And I decided that no matter what, there wouldn't even be talk of not going - with a nebuliser and mini-pharmacy already checklisted (including cortisone and antibiotics) I was confident we could handle whatever ailment came our way this year.

And then Gingivostomatitos came along and I was like REALLY? Super contagious viruses are not generally the most welcome Christmas gifts to bestow upon family. So, as per my last post, off we went to paed and came home with antibiotics, anti-viral meds and a healthy dose of self-loathing fuelled by my decision to stop Sam's maintenance antibiotic to test whether his immune system had shaped up a bit (which result obviously came back with a big, fat FAIL!) The day after our paed consult Sam's temp was still sky high and he just couldn't keep anything down, despite Motilium and Zofran Wafers which are usually super potent. By the following day, worried about Sam becoming dehydrated, I made an appointment with our GP after failing to get an appt with Sam's paed. I briefed Dr GP on our paed's consult two days earlier and then, after two extremely thorough examinations, braced myself for what Dr GP had discovered was worsening Sam's condition. And what he found was...NOTHING! Absolutely NADA! He said both Sam's mouth and throat were completely clear. After been told that it takes a good 7-10 days for Gingivostomatitos to clear up, I asked Dr GP if it was possible Sam's could have cleared up in just 48 hrs - he said perhaps we'd caught the virus in such an early stage that the meds had sort of halted it in its tracks but in his medical opinion, that was highly unlikely. What he did feel was certainly likely was that, with no evidence of a virus which needed treating, the antiviral meds were responsible for Sam's upset system.

Sam's temp eased up on its own a day or two later and after the usual sensory aftermath which follows any vomit-filled illness and a little oesophagul valve which also requires some time to settle, we were definitely still on course for our trip. We still don't really know how the ulcers disappeared so quickly from Sam's mouth and throat but do know that we trust both Sam's paed and our GP's judgement and so, with Sam having been the focus of many a prayer over those couple of days, can look only to divine intervention as his saving grace :)

And so off to the "seaside" we went! When you ask Sam where Ouma and Oupa live, he signs "seaside". Sam loves the idea of the seaside but the actual seaside petrifies him. Meg had a beach party a week or two back but Sam was so traumatised by the sound and view of the waves that we had to block his sight from the ocean the whole time we were there. Thankfully Stilbaai has not only the ocean, but a lovely clear and shallow-banked river which runs right through it. With the added benefit of no wave-sounds, Sam was hooked and the second we moved towards the front door at any time during the day, he signed "seaside". The first day he was a little cautious although tolerated his feet on the sand like a pro. By the second day he couldn't wait to hit the water and on day 3 marched straight in till he was hip-high in water. What a treat to see Sam enjoying himself so much xxx

The 4hr trip there was unfortunately a little less of a treat ;)

Mother Christmas popped in on Sat evening to ease Santa's heavy load for Christmas Eve.

Sam was a little wary but couldn't resist Mother Christmas's gentle charm

Sam's super sensitive eyes took some strain so he had to borrow Meg's shades for a while

Chilling in Ouma's chair

This was within 2 minutes of hitting the water. Just moments later we had a water-logged nappy on our hands and a little smurf so exhausted from all the flapping around that he passed out for a snooze on mom's lap. Seriously happy moments xxx