SAM...MORE THAN A CONQUEROR: News from Smurville

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, August 2, 2012

News from Smurville

Poor neglected ol' blog. Just haven't had much time to sit down and attend to posting...and I don't really fancy trying to rush through an entry, because then you land up with silly mistakes like typing "Smurville"! The very first word of my last blog post (and intentionally misspelt above).

As mentioned last post, our house is (now officially) sold so, up until last Friday, we were spending most evenings frantically viewing (and often re-viewing) the rather limited available houses for sale. We have eventually submitted an offer on a place which has subsequently been accepted by the seller and are now awaiting mortgage bond approval from the bank. The "new" house is much smaller than our current one particularly the garden but it is definitely more Sam-friendly being all on one level and compact enough for me to be able to know whereabout in the house Sam is at any given time. It's sure going to be interesting to see how Sam adjusts to a whole new home when it took him a seemingly-endless amount of time to simply adjust to a new cot last year.

We've been battling for some time with Sam's sleeping at night as he spends most of the time thrashing around and twisting himself from side-to-side...sometimes for hours on end and often so aggressively that he lands up hurting himself. Fairly convinced that it was sensory related as with many of Sam's issues, I tried giving him a last brushing and good ten minutes swinging time literally just before his bedtime (which often makes him quite sleepy) but it didn't seem to make much difference. Then to aggravate matters, Sam came down with an upper respiratory infection last week so we had a good couple of nights where sleeping for all three of us was limited to no more than three hours. Off we went to Sam's paed on Thursday. We were discussing Sam's ever-present rash on his tummy for which we've tried almost every cream by now. I asked howcome neither of Sam's anti-histamine's help with the rash, being his Zyrtec (allergies) and Cipla-Actin (appetite enhancer) which in turn got us to talking about the side-effects of the Cipla-Actin....being either sedatory effects or....HYPERACTIVITY!

*Light Bulb moment*

Mmmm...so giving Sam his Cipla-Actin at about 6pm with his supper might not be a super-smart idea? Apparently not! Dr B suggested I try giving it in the morning, which I did the next day but Sam was still just as restless as every other night, although with him being ill I hadn't held much hope. So on Saturday morning I thought "What the heck...let's veto the Cipla-Actin all together!" And would you believe, URTI or no URTI, Sam slept peacefully for the next few nights. The only hiccup we had was yesterday evening when Sam threw a mighty tantrum when having to get out of the bath....which lead to some mighty screaming...which lead to some mighty vomiting! By the time Sam went to bed, that little tummy valve was still tantruming all on its own...so the remainder of his supper came out just as he fell asleep. I'm definitely going to persevere without the Cipla-Actin and just find other ways of keeping Sam's eating habits up as he has generally had an incredibly healthy appetite for a while now. Even being sick last week didn't change his appetite, which is usually the first sign that something's up with him.

Although I was a little dubious about keeping Sam on the Zithromax antiobiotic for a six-month period, I have to admit that it did definitely make quite a healthy difference taking into consideration how many viral infections, etc Sam was picking up prior to it. So after some discussion with Dr B we've decided to continue for another six months as opting to stop the antibiotic smack-bang in the middle of Winter might also not be too smart.

Otherwise all is pretty much the same with smurf. No mindblowing accomplishments but no mindnumbing regressions either...which is quite okay for now. Chris and I have had to deal with some rather disheartening realisations over the past couple of weeks. On my side, I hadn't realised how sheltered I've become from having to share our family's challenges with "outsiders" as most of mine and Sam's social interaction revolves around Sam's therapists and doctors, my wonderfully supportive and accepting family and my very close-knit little circle of friends. So, having to explain, some times several times over, to the same person why a particular house would not work for Sam because it was too cold, too warm, too bright, too damp, too close to a noisy road, too far from easy access to highways in case of emergencies and, the favourite, why we just couldn't manage that extra R100,000 or R200,000 because our little smurf is a pretty awesome but costly investment all on his own...did become slightly exhausting. Chris shared a while ago that he sometimes doubts the probably good-intentioned sentiments of some, who believe they appreciate the challenges of having a differently-abled child but actually really don't...so it was quite a beneficial experience being reminded of that again.