SAM...MORE THAN A CONQUEROR: Gingivowotsowhoha?

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, December 3, 2014

Gingivowotsowhoha?

On Sunday afternoon we were celebrating with chocolate ice-cream after several fairly easy-going outings with Sam recently. On Sunday evening we were catching vomit and sporting a lovely temp of 38.5°Cish, by Monday we were not eating and now had an impressive temp of 39.4°C and by yesterday we were off to Doc Paed for some answers and hopefully the hope of some sleep in the near future.

But sleep in the near future it was not going to be...bearing in mind that by "near future" I mean NOW! Seeing as it is 10:43pm and I am blogging instead of getting some sleep before Sam wakes up.

WHAT. AM. I. THINKING???

Okay that's the end of my post. Over and out!

Juuuuuust kidding :D

So Sam has a really interesting little condition known as Gingivostomatitos which has effectively caused painful ulcers all over his gums, in his mouth and in his throat. Up until a week or two ago I might have been able to pinpoint quite easily where Sam caught the virus but over the last week and a bit we probably came into contact with close to 50-60 people and several public baby-changing rooms, etc so I fear we'll never know where it came from.

Treatment involves a 3-day course of antibiotics and a 10 day course of Lovir, which is going swell as within 2 mins Sam vomited up two doses of each med leaving us with only one full dose of antibiotic left. So we're basically running on prayers right now. It reportedly takes about 7-10 days for the virus to clear up and the virus is extremely contagious which is fabulous when you're constantly being given love and smooches by a certain Gingivostomatitos-yielding lil dude. I'm so hoping it's psychological but my own mouth has a very worrying 'sting' to it this evening :(

This is pretty much how Sam's been spending his week...really quiet and subdued :(

By yesterday I noticed that Sam seemed very sensitive to light and was rubbing his eyes alot. As Gingivostomatitos can spread to the eyes and cause permanent damage to the cornea, I am keeping close watch on those baby-blues. Struggling with the brightness en route Doc Paed yesterday, I had no alternative but to offer my sunglasses to this totally cool dude :D