SAM...MORE THAN A CONQUEROR: Third time lucky!

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, June 1, 2011

Third time lucky!

After Sam's croup diagnosis last Thursday and with a little help from some of the prescribed treatments, Sam's symptoms seemed to ease off a tiny bit...with "tiny" being an understatement. I am not sure about Sam, but I am pretty much experiencing a decent dose of cabin fever having being basically restricted to the house with Sam being so sick, with the exception of the occasional trip to fetch Meg from school (although Brampies has pretty much taken on both Meg's and Luke's to-ing and fro-ing to school/college for now) and our doctors' appointments. Thankfully Meg's hockey tournament was cancelled on Saturday (Did I say "thankfully"? At least it would have meant some contact with the outside world) but we unfortunately also missed out on Rian Smurf's birthday party on Sunday, as well as having to subject Ouma and Oupa to a pretty dismal visit consisting of few outings and a house full of patients.

Yesterday was Chris' birthday and how did we celebrate? With a trip to the paediatrician after yet another difficult night with Sam, which ended with him waking before 5am screaming in pain. The remainder of the day was spent with endless v-word cleanups thanks to Sam seeming completely incapable of keeping any food or liquid in his stomach, including his meds! Aaaarrrgggghhhhh!

The upside (and yes, surprisingly enough, there was one) was the paediatrician's appointment. For more than two weeks now (and two GP visits) I have insisted that there was something more serious going on with Sam, other than a cold and even the croup. But there has been a slightly confusing piece to the puzzle which has managed to throw the other docs off - being that not once during this period did Sam have a fever. Admittedly this is rather strange seeing that Sam's core body temp is fairly high and always, without fail, the first sign of serious infection is that he gets a fever...sometimes as early on as two weeks before the onset of any other symptoms. Only once over the past two weeks has his temp even managed to reach over 37ºc (with his "norm" being about 37.2ºc) and that was yesterday morning, otherwise it's been hovering between 35.5ºc and 36.6ºc, believe it or not.

Now, I am pretty sure that Sam has in fact been suffering with some cabin fever himself, because he LOVED having to hang around in the waiting room at Dr S's office and was as bubbly and joyful as always...pretty remarkable when we found out what's been bugging him. When looking into Sam's ears Dr S started saying things like "Ouch" and "Shame" which we figured either meant Dr S's little light examining-thingy was causing him some sort of pain...or he was reacting in sympathy to what he saw. It turned out to be the latter. He said on a scale of 1-10 with 10 being a burst eardrum, Sam's left ear was an 8 and Sam's right ear a 9.5!!! A-ha! F.I.N.A.L.L.Y! By yesterday morning I was really starting to feel quite despondent and hopelessly frustrated because I could see that there was something serious ailing Sam but after two pretty "wasted" doc appointments, wondered if maybe I was really becoming as unnecessarily pedantic as what, I am certain, some people have started believing I am.

Unfortunatley, the high of finally knowing what was wrong wore of soon enough after two failed attempts of trying to get the antibiotic (non-penicillen for now, until we've confirmed Sam's allergy) and celestamine to stay in Sam's tummy, not to mention anything remotely similar to food or liquid. No matter how little we administered at a time, regardless of any amount of dancing and singing to try and distract him from the urge to throw up....everything came spewing out anyway. Eventually though just after 7pm we managed to get half a dose of both the antibiotic and celestamine in, which might have been due to an effectively administered pain suppository by Pappa Smurf which had Sam back to his babbly, joyful self. Sam even managed to take in a little Cera-lyte before bed and for the first time in more than two weeks had the closest thing vaguely resembling a decent night's sleep.

Some random pics taken sometime over the last couple of weeks.....

Sam is never as happy and content as when there is some sort of chocolate treat melting in his mouth! Of course, with his being ill we've had to avoid the chocolate for now but I can almost hear him giggling in delight when next he is allowed to indulge!

Aunty Diane and her Sunday school class made this crown for Sam a couple of weeks ago! It just so happened to perfectly match his little top!

About a year ago, at the very least, we found a dvd at a local factory toy shop called Brainy Baby. Now, from an adult's perspective, the dvd is pretty amateurish (hope I can't get into trouble by saying that) but, with all of the little games/songs/counting, etc being carried out by children (mostly between the ages of 1 and 4) Samuel adores....as in A.D.O.R.E.S the dvd and watches it at least three or four times EVERY day! Sometimes non-stop! He waves when the children wave (the pic above), smiles when they smile, does a little squirmey-jiggy type thing when the dizzy bird puppets dance and grabs my hand to either sign the alphabet next to the screen when it comes on or quickly display his foam set of numbers next to the screen when the counting comes on!