SAM...MORE THAN A CONQUEROR: IMPROVISING......

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, April 14, 2011

IMPROVISING......

As mentioned yesterday, Sam had another OT session this morning (No, I didn't remember to ask about getting him to sleep, it completely slipped my sieve....uuuhhhmmmm, I mean MIND). I don't know about ol' Smurf, but I thoroughly enjoyed it. Sam was a little bit grumpy after having woken up that way this morning which made him a little challenging to work with, but I adore watching and learning all the different techniques and activities one can do with him. So, new activity learnt today was Sam playing in a ball "pool" which basically consists of a camping cot filled with little plastic balls you often find in kiddies' play pits. Sam did surprisingly well, although I did have to climb in with him. Luckily enough we have an entire bag filled to the brim with the same balls at home which Sam hardly plays with and we also have an unused camping cot, due to Sam's depth and colour sensitivities. Then remembered that the camping cot would not be at all practical as it is not flat on the ground, but stands on little feet which wouldn't be a problem for Sam's tiny little being but mine on the other hand??? Putting him in there on his own also isn't an option because if he was able to tolerate being in the camping cot, we wouldn't have had to go out and buy a whole new cot recently. So, on to Plan B which is clearing out one of Sam's toy boxes which is high enough to prevent him from falling over and out should he wriggle too much, but low enough for him not to feel threatened or insecure and to still see what's going on around him. Well, it turned out to be an excellent improv as he went into his new "ball pit" with surprisingly little reluctance and spent a good ten minutes in there until I started feeling guilty about leaving him on his own (meaning I was a whole arm's length away as opposed to having him attached to me) and took him out. In any case, wouldn't want to overdo it to the point where he starts developing a negative reaction to it but it was so great that he tolerated it as it helps with deep pressure input and, once he becomes more comfortable, can even become a stimulating activity by putting him in there and hiding one or two of his favourite toys and having him try to find them. Here are a few pics.....

Snug as a bug in a rug!

Of course there had to be knocking involved and how cool for Sam that he could knock with two hands at the same time, without having to even fully outstretch either arm!

And, talking about bugs, I put Bigley Bug into the box with Sam as BB has a little mirror on his tummy so Sam could occasionally check himself out, which he loves!

Need I report that Sam had to be walked to sleep again last night? If this was not the case I would have either had to worry about someone sneaking into the house and switching my little smurf with some strange fall-asleep-on-its-own type baby or had to doubecheck that my post actually published in the first place because when oh when has it happened that I've posted about something great happening and it actually stays that way??? But, thankfully, there was no vomitting involved which is a pretty good second prize, even though my back, shoulders and arms contort into all sorts of spasms once Sam's eventually asleep. (Mmm..perhaps that is why I seem to have lost most of the use in my left arm and hand...seriously, in a matter of five minutes this evening I dropped Sam's entire bowl of supper and then the shaker with his milk in it. On Monday night I dropped a bowl of boiling hot rice. Anyhoo....) This evening, with Sam being super exhausted after a very active day, I decided to try and persevere with just putting him in his cot and made sure that everything was as it had being on Tuesday evening...all was going well, other than an occasional whimper. HOWEVER (yes, there's a "however") while Chris and I watched from well concealed hiding places in the room to make sure Sam was okay, Chris started caving and it was a matter of minutes before he'd picked Sam up. Naturally I told him that he'd destroyed all my hard work and perseverence....all two nights of it....and that he would have to get Sam to sleep...which he promptly did - WOOOHOOO! No spasms for me tonight :)