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...
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 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, March 30, 2011

Feeling G.O.O.D.

So, our little Smurf iS becoming quite the PC addict...(can't imagine where that addiction would come from - nudge nudge wink wink, Chris). A couple of night's ago he was quite content to sit on Dad's lap and watch various kiddy videos like The Wheels on the Bus and Five Little Monkeys Jumping on the bed.

Meg's friend, Kaylee, gave Sammy the most adorable little son is such a charmer where the ladies are concerned. We tried it out and he seemed to tolerate it quite well even though he usually doesn't take too easily to caps, etc. And it did give him a very adventurous, Indiana Jonesy type of look.

When Sam hits a negative sensory overload he, as you all know by now, usually throws up. When he gets too excited he bites! He bites sore! So, when watching him model his IJ cap the other evening, we all started laughing and of course, Sam munched those little teeth into dad's shoulder.

Talking about sensory issues - Sam had his very first OT session today and, while trying to remain realistic and not get too excited, I am so hopeful and confident that we are on the way to helping him (not to mention a little sad that we weren't able to seek this kind of help a bit sooner). Nevertheless, we have made a gigantic step in the right direction and it feels G.O.O.D. We found out many interesting things this morning in our little lecture about Sensory Integration like the fact that sensory defensivess can even have as severe effect as influencing one's gastrointestinal function, not to mention sleeping habits (no surprise there), balance and, wait for it....even reflux. Sam's inability to use two hands simultaneously which had us stumped many months ago can even be related, as well as his jumping, knocking and most definitely the biting.

So his OT went over the brushing technique with me (which Aunty Mandie had already showed me and had spot on - every considered a career in IEP Aunty M?), as well as the deep pressure therapy on joints and in his mouth. In actual fact, the OT demonstrated the techniques on ME...and it was strangely soothing!!! As it took an hour and a half just to assess Sam, we begin proper therapy only next week, other than me continuing with the brushing technique, etc every two hours as well as having Sam sleep under a weighted blanket now. Can't wait for next Thursday.

Other Smurfy News : we are going to attempt a short 2-day trip to Stilbaai on Sunday but have warned the kids to be prepared in case Sam's throwing up remains so excessive, in which case we might have to cancel on short notice. The only thing worse than sitting in a pool of vomit for twenty minutes, is sitting in a pool of vomit for four hours!!!!! I am so tempted to post how long it has been since Sam last threw up, but every time I do that he throws up, without fail, within hours. I WILL tell you that it is more than twenty-four hours and just slightly less than forty-eight hours (oh please don't let that count as "telling").

 And, in closing, a pic of our very-much-needing-a-haircut Smurf!

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