SAM...MORE THAN A CONQUEROR: ZERO TO THREE.....

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 23, 2010

ZERO TO THREE.....

.....in less than a week. Three being the number of teeth Joyful Smurf has acquired since that very first one made its appearance last week! Way to go, Sam, especially cutting your "teething time" down by doing 3-in-1 jobs - lets hold thumbs they all go like this (who am I kidding?). Neither Meg or Luke teethed in an exceptionally fussy way but for some reason I just expected Sam's teething to be more of a nightmare. Sure he's a little bit crabby and moaney every now and again but, taking his recovering thumbs into consideration as well, he's certainly not doing too badly at all...there's no fever or anything like that and although his tummy's a little looser than usual it certainly hasn't reached "runny tummy" status just yet. He has gone off his food a little bit, but he was never really that in-love with the Purity food in the beginning and much prefers "real" food, he even had some of my pear yesterday (obviously I mushed it up a bit for him) but gags and pulls his face when I try him with any of the Purity fruits.

Monday's appointment with the OT was relatively uneventful, they just checked that the splints weren't causing any major skin irritations and altered the left one a tiny bit after we had to tighten it some. As I type this we are just waiting to hear back from the hand specialist's rooms as we noticed that the wound on his right thumb has been bleeding again and we aren't sure if, three weeks after the operation, this is normal?

Thank goodness that alot of the food stains that were on the strap were cut off the splint on Monday after adjusting it, but you can still see proof that Sam is persevering in trying to suck and chew on this strange new thumb he's grown.

What bliss! Joyful Smurf and Silly Smurf having some "downtime" yesterday - I think it lasted a total of about seven minutes, the amount of time it took for him to turn the bucket upside two or three times and then get bored. And instead of me using the time constructively to take care of one or other much-needed house task, I spent it taking pics of him actually having the downtime!

For his birthday we bought Sam some lovely little toys that make music and animal sounds, etc. but he loves the most basic and simple one - his shapes bucket. For some reason, it just has to be upside down though - as soon as you give it to him he becomes intent on turning it around, splinted hands and all. Before his op he loved taking one of his plastic bath boats (a great buy, Dippie) and knocking it on everything from the walls, doorframes, the animals in his Noah's Ark (poor things) his head, my head (again...poor things), etc. and especially on the upside-down bucket. But with the splints on he can't quite grab the little boat properly so we bought him a little toy drum over the weekend but it just doesn't seem to give him the same satisfaction - go figure!