Sam. Conqueror. Overcomer.

On the 15th May 2009, Samuel Christian made his way into this world...two month's premature and in severe respiratory distress. Within hours, Sam was diagnosed with Rubinstein-Taybi Syndrome - a very rare congenital disorder, of which little was known. The diagnosis together with the immediate challenges Sam faced to thrive became our core focus and it was with joy and thankfulness that we eventually brought Sam home, after nine weeks in the NICU.

As time pressed on, it became obvious that Sam's development was falling behind that of his RTS peers. Shortly before his 5th birthday Sam underwent a brain scan and it was confirmed by a paediatric neurologist that in addition to Rubinstein-Taybi Syndrome, Sam also has Cerebral Palsy related to his premature birth, as well as Autism.

This blog chronicles our journey through these challenges...
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)

Saturday, January 1, 2011

Sensory Mayhem and a kiss for the Kitty

Sam's dressing change on Wednesday morning went relatively well, apart from Sam screaming blue murder from the time Dr F touched the first tiny corner of the dressing until the last little stitch was lifted off his skin. In all fairness, his already quite delicate skin was absolutely bright red so I imagine it must have been at least a little bit Eina! (sore). Dr F told us that they prefer for the little tabs on the skin to stay on as long as possible (there are disolving stitches just beneath the skin), even as long as up to a month in order to limit the amount of scarring. I was a little disappointed at first, I wanted to see with my own eyes that the wound looked "okay" (me being the expert, of course) but the tabs are pretty transparent and Dr F was quite satisfied with the way it all looked so on they stay. Yeah - another bath-less few weeks for Sam. The other problem is that the dressing goes quite far down on that little back, low enough to be covered by his nappy, which caused another problem this afternoon (as I had expected it would at some stage) after a rather "messy" nappy. So we had to do another dressing change this afternoon, thankfully we had bought a spare dressing and some Unisolve sachets last week. Just need to remember to replace them in case we have another such incident.

Right, so the wound is healing well and there appears to be no problems whatsoever on the physical or medical side of Sam having had the surgery. In fact, I am still finding it quite amazing that it's been almost two weeks since Sam had the op, but there IS one quite distressing factor reminding us - Sam's sensory problems have increased tenfold and seem to worsen with each day...and they weren't great to start off with. I mean W.O.W. To be honest I have never seen anything like this or imagined that a sensory integration problem could become quite so debilitating. Sam is PETRIFIED of doing the most basic things, let me give you an example : when you sit him down ANYWHERE, regardless of whether it's a familiar surrounding (like his cot) or not, he clasps his little hands together tightly under his chin, stiffens up completely and starts whimpering and the slightest little movement in the room or cot brings on one startle reflex after the other. I know it's not a physical problem (which I did first worry about) because if I sit with him in between my legs, there is no issue at all....but let me move away! We've always had to be careful of walking too fast while carrying him, turning suddenly and that kind of thing because it always startled him...but now we can't even bend over to put him in his pram or carseat without his little arms flailing to the sides. Putting him to sleep at night has become an absolute nightmare, for all parties concerned. The second we start initiating any kind of bedtime ritual...dimming the lights, putting on his lullaby's, quieting the house down and assuming the put-Sam-to-sleep position...he starts screaming and, nine-out-of-ten times lands up vomitting (which is great when we're doing the whole "no bath" drill) and he basically screams himself to sleep EVERY night. But, alas, there's no sigh of relief or victorious smile shared between mom and dad afterwards because without fail, anything between thirty minutes to an hour later, he wakes up screaming and so we start the whole process over again. Sure, we expected some degree of post-op/hospitalisation trauma but really weren't prepared for something quite so severe. Now, don't get me wrong, I have no problem at all walking Sam to sleep every night, even if it takes up to an hour...it's how we've always done it and truth be told, the extra carpet-pounding would definitely do my chocolate and cookie saturated body some good (seriously, I have NEVER with a capital E.V.E.R. eaten as many cookies and chocolate treats as I have over the past week or so - and for those of you who know me personally, that's quite a statement for me to make) but it's the screaming himself to sleep that's so unbelievably heart-wrenching.

Of course with the obvious concerns about Sam's rather fragile state at the moment, comes that relentless guilt-laden awareness that Sam's paed told us months ago that we needed to get him to an OT to help with his sensory issues but first came having to choose between speech therapy and occupational therapy and we, now quite obviously, made the wrong decision and thought the speech therapy was perhaps more important while hoping the sensory issues would pass on their own. Then, after finally deciding to go the OT route, were faced which the "which one" problem as apparently some OT's just don't believe that Reflex Integration Dysfunction is an actual disorder and those that do are few-and-far between, with equally exceptional rates. And then came the TSC surgery...and then...and then....and then we failed our precious little boy by not addressing this problem much sooner, which might have put him in a much more capable frame of mind of handling the last two week's events.

Still, we remain thankful that Sam is physically recovering extremely well....and we still receive daily enquiries from friends and family about his progress and the knowledge that we are surrounded by such caring and loving people keeps us strong and encouraged. And of course, apart from the above issues, Sam remains his usual charming and excitable self and has become quite adept at using that one tiny little pointing finger as a means of communicating what he wants you to do (which is usually knocking, on his behalf, on the doors and windows and tables, etc). or where he wants you to "arm-taxi" him to. His growing understanding of language, increasing almost daily, never ceases to amaze and inspire us. Yesterday afternoon him and I were sitting reading his Kitty Peek-a-Boo book and he has this really cute habit when he seems to be concentrating, of biting down on his teeth and turning his head sideways and leaning down and almost putting his face/ear onto whatever object he is busy with, whether it be the keyboard, latches board or even the bubbles in the bath...so he was doing this yesterday and I told him to give the kitty a kiss, while making kissing-sounds, and would you know - he leaned over and gave that little cardboard kitty the biggest, lick-type-openmouthed kiss you've ever seen! This morning I wondered if he's remember what to do when I told him to give the kitty in the book a kiss.....and??  Of course he did, precious little smurf that he is!

So, here's praying that Sam settles down soon from the upset of having had his surgery, until his paed comes back from leave next week, when I can ask him to point us firmly in the right direction of helping Sam.

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