SAM...MORE THAN A CONQUEROR: September 2009

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)

Monday, September 21, 2009

A challenging few days....or ten...ended off with a coo!

The passed ten days or so have been quite challenging...all filled with seemingly "minor" issues which cause major problems. Sam's congestion reached a point where he almost completely stopped drinking. With his weight still at a scary 3.1 kgs for his four months, he can hardly afford to be cutting back on his milk. We tried to get an appointment with his current paed, who is about 45 minutes away from us, but when it didn't look like the appointment was going to happen, I took a chance and called Meghan and Luke's old paediatrician and luckily, after explaining the situation to his assistant, we were slotted in that very afternoon instead of having to wait two weeks for one. The bad news, Sam had an ear infection and was put on a course of antibiotics. The good news, this paed has a fourteen year old Rubinstein-Taybi patient, which is wonderful. So he's worked through all our current problems previously with another set of anxious parents. He also referred us to an orthopaed for Samuel's little feet (the left one is quite severely turned in and upwards) as well as an NDT Physiotherapist. We saw the orthopaed last Thursday who sent us for a scan and some x-rays, not of Sam's feet but of his hip which he was afraid was dislocated due to a "clicking" noise whenever he moves. We went for the scan and x-rays on Friday and luckily the hip is not dislocated. So the plan ahead, we will look again at his thumbs when he is six months old. For now, we have been given some exercises to do with his little foot which will hopefully stretch it. If there is no great improvement within the next four weeks, then they are going to put his little foot into plaster. At least surgery is not our first option. His spine for now seems perfect (fear of RTS tendency for curvature of the spine). And all through this Sam's drinking was getting progressively worse....topped off with the added strain of Meghan's school concert which took place Mon-Thurs every night for two weeks, things were not going well. But after sitting through an hour's unsuccessful drinking session which inevitably ends with Sam screaming uncontrollably, when we feel like we simply just CANNOT go on anymore....that we are not strong enough to take care of this little angel....Sam would throw in a surprise, a little something that would completely erase every bit of frustration, anger, despair and helplessness....his new found "language"....a coo!!!! Although 90% of the time his "speaking" is completely distorted by the excessive and ever-present phlegm in his throat, just the thought that he is trying to communicate with us and doing something "normal" babies do, completely uplifts you and gives you a little bit of strength and spirit to go on a little longer. Thankfully, the passed two days have gone so much better and it is in fact Meghan that is sick now with sinusitis - aaaahhhh....the joys of chronic allergy sufferers and this time of the year.