SAM...MORE THAN A CONQUEROR: November 2015

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)

Thursday, November 19, 2015

Smurf! Smurf! Wherefore art thou Smurf...

Sam's had quite a busy month and a bit, leaving mom little time for blogging...but thanks to my ever-handy phone camera, creating a timeline of the last few weeks is a delightful breeze.

At the beginning of October Sam was off on a road trip to Stilbaai to visit his Ouma and Oupa and cousins Hendrik and Boeta Dirk.

After a fun weekend of seaside walks and being kept entertained by all the goings on, one would have expected the 4 hour journey home to be filled with blissful silence?

It was not.

It was instead filled with a non-stop,throat-annihilating screeching which proved distressing to the point of tears for at least one of the car's occupants (not Sam). It was not the first screeching episode of the weekend as this seems to be Sam's new chosen method of communication whenever he is unhappy about something but it was by far the most traumatic.

The following week Sam was ROCKING his new AFO's! And I say "rocking" because one of the main reasons for not doing AFO's sooner was that we were pretty certain we'd be wasting an alarming amount of money on something which Sam would regard with the same amount of distaste as he does shoes and socks. With a completely resistance-free, 8 hour long wear on just the FIRST day we are beyond impressed with how tolerant Sam is being with these "boots of hope"! It has taken him some time to get used to actually walking with them on, which is pretty understandable especially as Sam makes use of his angulated big toe to sort of anchor him to the ground, but both Cornelia (Sam's physiotherapist) and I can already see the difference having a solid base of support has made to Sam's walking.

With Sam weighing in at a cool 24kg's, which seems to be increasing almost on a daily basis, having him being able to walk independently would be an incredible blessing to both mine and Sam's physical wellbeing :D

Sam's sleeping is, again, non-existent. And not because he doesn't want to sleep, which is perhaps the most frustrating part. For some unfathomable reason, what seems like a bucket-load of mucous seems to form in his airways at night and he spends hours trying to choke his way through to some actual breathing. It has been going on since the end of September so by now, as I am sure you can imagine, we are ever so slightly sleep-deprived.

Three Saturdays ago Sam had two seizure episodes. We admitted him the following Thursday really just for observation, but when his ENT saw some fluid in his ears and an indication that Sam's sinuses might be blocked up, it was decided that a 3rd set of grommets and sinus wash would be in order. The surgery was scheduled for the Friday but Sam had an unexpectedly decent night's sleep on the Thursday already. Being "nil per mouth" from 7:30am already and only going into theatre at 2pm, Sam was such a little trooper. He only started asking for something to drink about an hour before he went into theatre.

The procedure was over in record time and Sam was monitored overnight in ICU. Again, he absolutely blew me away with how well he did with having all those beeping little gadgets attached to him, not to mention tolerating a drip in his hand (!!!) which has always been a HUGE no-no and is usually removed within an hour due to him bashing the bandaged hand to the point that the drip in any case no longer works.

As with most of Sam's ENT procedures, a little snottiness can be expected afterwards, more so this particular time with him having been snotty in any case beforehand. Surprisingly enough though, he had another decent night's sleep the second night...despite trying several times to sleep on his stomach, monitors or not. But his very first night back at home and we were drowning in mucous again and apnoeaing a-plenty. The only explanation it seems is that there is something in or around our home to which Sam is having some sort of respiratory reaction...now to figure out what. Process of elimination is not working out that great hindered even further by the seasonal change which, this year, seems to have affected many.

Sam and his never-ending worry that the ducks at the local pond are just not being fed enough, just as worried (it seems) as to whether they are all safely where they're meant to be as he attempts to do a headcount of all couple of hundred of them...on just two unique little hands.