SAM...MORE THAN A CONQUEROR: Now What?

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, October 29, 2009

Now What?

First things first....Sam's visit to the ENT Specialist went better than I expected, for two reasons. One : Although he did cry a bit (Sam, not the ENT) it was nowhere close to his usual hysterical , out-of-control crying and Two : I was really worried that the ENT's first course of action would be to put Sam under aneasthetic and put in grommets but our first plan is to treat him with a cortisone nasal spray for a month to see if it doesn't decrease the amount of mucous he's producing, which is actually what is causing the fluid build up in Sam's ears. If this doesn't work and we do need to resort to the grommets and taking out his adenoids, his ENT reassured us that he works with an excellent paediatric anaesthetist and said he would first set up a consultation with her for us where we can discuss the usual problem RTS kiddies have with anaesthetic like trachea collapsing, irregular heart beats, etc. So that put us a little at ease. He also suggested that we change Sam's formula, which we've also done.

Sam's physio session on Monday also went better than usual...but thanks to Meghan I am afraid. I couldn't take him in the morning, so Meghan was already home from school when we went. Just as Sam was about to go off (after a whole fifteen seconds) Cathy asked Meghan to shake Sam's rattle to distract him and it worked like a charm...well for Sam and Cathy at least, not sure how much Meghan enjoyed it. It was the most work Cathy's managed so far with Sam and he even sat for a period of about three minutes, completely supporting himself on his two tiny little matchstick arms...and they really are like little matchsticks...he's never looked so small as at that moment, this tiny little smidge of a person doing something which, if you don't know how old he really is, looks way to "grown-up" for him.

Spot the doll!

But something has gone horribly wrong since then....our Sam is back on sleep strike during the day, but SERIOUS sleep strike. On Tuesday the longest he slept for was 20 minutes....20 MINUTES!!!! Do you know how much you can fit into 20 minutes, when you need to take a shower, wash and sterilise baby bottles, tidy the house at least somewhat, eat something yourself and when just making his formula now takes almost an hour alone with first having to prepare the gel thickener. So when I went to sleep onTuesday I hoped that he'd just had a bad day, but then Wednesday was the same...so when I went to sleep on Wed I hoped he'd just had a bad TWO days....and then would you believe he slept from 8pm on Wed night until 5am on Wed morning and then had another 3 hour and fifteen min nap on Thursday morning and I thought...YAHOOOOOOOOO...whatever the problem was it solved itself (aren't those just the best problems to have?). But by yesterday afternoon he was back on strike and did his usual three hour wake-ups last night and back to no sleeping again this morning. So now what? I cannot figure out what it is that so quickly and drastically changes his sleeping routine. Weird.

Anyhoo....Meg and I are off to the ballet tomorrow....I am not sure who is more excited :-) Can't wait!