SAM...MORE THAN A CONQUEROR: Still settling in to 2011....

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, January 30, 2011

Still settling in to 2011....

It is so hard to believe that we are already through the first month of 2011...the days are literally just whizzing by, perhaps because we are still trying to find our feet in our new routine. With Luke taking classes a fair distance from where we stay, Sam and I are spending on average about 2.5 hours a day in the car and that's on the "good" days, which are days without doctor's appointments, etc. From tomorrow morning though Luke is going to be braving the South African Transport System (Yikes!) and attempt travelling in by train. Our suburb is unfortunately not very central so there is only one train he can catch and one bus. He would need to be at the bus depot at 6:05am though, so we have opted to try the train first. He has never been on a train before and I can see he is really nervous about a) getting off at the wrong station and b) not being able to find his way to the college as he doesn't know the area very well. I am just holding thumbs that it all works out great as it would be a HUGE relief if all we had to worry about was fetching him in the afternoons. Brampies has been an incredible help (as always) and is eager to take or fetch Luke whenever he can...we are truly thankful to have the luxury of always being able to rely on him for help no matter what the inconvenience to himself. My three hooligans are blessed to have such a wonderful Grampa.

Speaking of doctor's appointments, we have as yet been unable to secure an appointment with Prof F but did manage an appointment with Dr S who was the paediatrician who oversaw Sam's care after the operation. He had a look at Sam's reflexes, which he said look great, as well as the scar and suggested we place Hypafix strips over the cut for a minimum of three months in order to aid the healing process, which we've done. He was quite amazed at the amount of aggressive teething going on in Sam's mouth, thanks to three of Sam's molar's battling to come out (one from more than three months ago). He suggested putting Sam on Vit D drops to help the body better absorb calcium and suggested I put him back on something for pain for a little while longer, at least in the evenings. Dr S also gave us the go ahead to dive back into therapy so that's what our little smurf has in store for him this week.

Sam's weight has unfortunately taken a bit of a dive as he has not been eating or drinking like he used to, so we have switched his formula to PediaSure, which conveniently comes in Vanilla and...Sam's fav....CHOCOLATE! So hopefully he'll manage to find some of that weight that's gone missing.

Perhaps the highlight over the past couple of days is that Sam has been sitting much better than he has for quite a while since the surgery, but more importantly, has been using that right leg more and more each day. In fact, we have spent a great deal of time over the past two days on one of Sam's favourite activities...walking! How wonderful is that? He still has some shaky moments...literally and figuratively when he either suddenly gets scared and almost clambers up to my arms himself or when he somehow loses his "swagger" and suddenly becomes completely unco-ordinated. Still, it is a huge improvement and very promising that there are definite signs of healing.

Below are some pics of his budding soccer-star potential as he demonstrates his great footwork....(note poor "Bot" lying utterly defeated, facedown on the ground after been wrestled into that position by our Conqeuror!)

On Thursday afternoon we had the wonderful opportunity to be completed sandwiched between two veld fires, on either side of our house and close to our neighbourhood - or so we thought due to the severity of the smoke, but with the gusty winds that were blowing the fire could really have been a fair distance away. Regardless, our house was covered in suffocating amounts of smoke with pieces of ash raining down in the garden. Needless to say, we all woke up on Friday with sore throats and irritated sinuses and smelling as if we'd just been to a braai/barbeque...as the meal!

This is the normal view from our front door....

This is what it looked like on Thursday...

Just before all the smoke rolled in, Meghan noticed our neighbour wheeling a large tree stump into his garden - that's all the inspiration she needed to fashion a wild theory about where the smoke was really coming from and so spent most of the afternoon with her eyes glued to our neighbour's house expecting to see flames out of their front door at any given second.