SAM...MORE THAN A CONQUEROR: Learning who's boss, a ferocious beast and Frugal Dad

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, February 17, 2012

Learning who's boss, a ferocious beast and Frugal Dad

Sometime over last weekend (could perhaps have been Sunday) I was standing outside getting a breathe of air and debating with myself, in desbelief of course, whether it could actually be possible that a new ailment had been added to Sam's surgery recovery and consequential throat infection. Mid-debate I noticed this rainbow and while running inside to grab my camera found my spirits lifting a bit as I was certain it was a sure sign that there was nothing to be anxious about.......

...alas Monday morning's ENT appointment slammed that momentary lapse of reason to the wall! But, oh, the joy (albeit it temporary) of whimsical daydreams....

Despite his tonsillitis and, mostly nighttime, struggles with swallowing and breathing Sam didn't seem in such bad spirits for the most part and has been happy to crawl around and play and not-sleep (you know, the usual stuff). There is an app on his iPad (can't quite remember the name - could be "Zoo-something-or-other) which shows a pic of an animal, says the animal's name and then makes the relevant animal sound. Sam has taken to matching his little plastic animals to whatever animal pic is on the screen. The penquin picture usually has us laughing as the penquin's eyes are yellow and a little scary if you ask me and the penquin sound is quite screechy and startling...and Sam knows this by now, but still insists on flicking repeatedly to the penquin pic, pressing the sound button and then moaning as if he's been unwillingly subjected to it. Comical little smurf...

Comedy aside - the challenge of trying to get Sam's antibiotic in him has become hectically distressing and on more than one occasion driven me close to tears, purely because I know how vital it is for him to complete the course in order to avoid his tonsils having to come out. He had one full dose on Monday and another full dose yesterday morning, if I remember correctly...but that means that out of the required 45mls he needed in total, he's had just over 9mls which I doubt would be anywhere near enough to combat the tonsillitis. In actual fact, I don't just doubt it - I'm pretty darn sure it hasn't been enough purely because I can see what minimum affect the Augmentyn has had on his system, compared to the usual havoc it wreaks. The last time Sam had the Augmentyn we actually stopped it 3½ days into the course because, despite me stopping his Movicol completely and keeping him on Reuteri, the diarrohea just got completely out of control. This time round I haven't even had to reduce his Movicol at all, nevermind stop it completely. So the better part of the Augmentyn has been either vomited out when Sam's starts crying because of having to have it or plain and simply spat out, sometimes after having been kept in Sam's mouth for over half-an-hour. The picture below was taken on Tuesday night when (and this is no exaggeration) Samuel kept the Augmentyn in his mouth for over 45minutes. I decided to try and give it to him while he was in the bath, for two good reasons 1) being to hopefully try and salvage some of the furniture and carpets which is coated with the lovely chalky mixture that is Augmentyn and 2) being that I thought his bathing and playing and then getting dressed, etc might distract him from his stubborn refusal not to swallow (and that has to be all it is, because the stuff doesn't even taste THAT bad...he's definitely had worse). How naive of me to think I can outsmart Mulish Smurf. Sam proceeded to be bathed, dried, dressed and then happily played on the floor...all the while keeping the, now mostly-saliva,mixture in his mouth.

The problem of course was that by Wednesday I couldn't even try and re-administer any of the doses expelled because there just wasn't enough of the antibiotic left. So if it came out...it stayed out! This morning, low-and-behold, smurf swallowed every last drop of what was left of the Augmentyn (which was only just over 3mls) without moaning, resisting or gagging/vomiting once! Just too little, too late. With the un-resisted dose this morning it's as if Sam was just making it exceptionally clear (as if there could possibly have been any disillusion) exactly who is boss....

Random Stuff

I was watching a program yesterday morning about Chow Chow's and the expert leading the discussion advised that Chow Chows are one of the most powerful and formidable breeds of canine and even have the extra teeth to prove it. I am waiting for a re-run of the show so that I can record it and show it to our Max - the same Max who literally wet himself when a 3 month old pupply ran up to him to play one day. The same Max who tries to slink away as much as possible into the ground when we go for a walk in the hope that the neighbourhood dogs might not notice him and, horror of horrors, bark at him.

Our ferocious beast....

Frugal Dad

I was asked some time ago to share a link to Frugal Dad regarding some thought provoking statistics regarding the high percentage of toy sales in the USA. While the larger part of our blog's followers are South African, the information is quite interesting nevertheless and I know I too (when financial circumstances allowed) have fallen prey to the purchasing of unnecessary toys on occasion.