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)

Friday, October 22, 2010

The most painful snack EVER!!!

Up until recently we suspected that Sam had extremely poor hand-eye coordination as he could not seem to lift an object, mainly a food item, to his mouth which meant whenever we wanted to give him a snack we would have to hold the chip or cookie while Sam, paintstakingly-slowly, "munched" away. I even mentioned it to his PT. However, when he developed his "chew-on-anything-and-everything" habit he seemed to have absolutely no difficulties holding the blanket/feeding-towel/paper/sock/shoe, etc to his mouth and so it became quite apparent that our little smurf was just a little lazy - why do it myself if there's someone else prepared to do it for me? So we decided to test our theory and put his favourite snack (cheese puffs) in a bowl in front of him to see what he would do and sure enough, after a few moments of utter bewilderment he lifted a chip to his mouth and took a bite. The first few attempts were rather shaky as after each bite he would let the chip fall, but he's become much more experienced now (even though that little angulated thumb still occasionally gets un unexpected nip). I can say for sure that he is NOT loving this new push of independence and it either seemed to affect the flavour of the cheese puffs or caused Sam some unexplained form of pain, if these pics are anything to go by...

Really Mom? Is this totally necessary? You know how I hate change!!

 Well this is what I think of your idea! To my amusement though, after emptying the bowl of chips onto the floor and mushing them around on the carpet a bit...he actually tried to pick them up and put them back into the bowl again (something I've been trying to get him to do with his shapes bucket for ages).

Sam is still keen to tolerate some time in the crawl-position, although usually collapses after trying to move more than one or two hands forward. But he'll stay in this position for ages, with a little rocking thrown in every now and again.

This (to our posture's dismay) is still his favourite thing to do at the moment. And of course it makes so many activities more accessible, like unpacking cupboards, chasing the cat, kicking the ball (which he's remarkably good at).

The two-headed "monster" which came by on Wednesday evening to terrorise our family! No, I do not know what inspired this idea, nor do I want to know :-)

For the news that we (thankfully) did not catch on'll understand why soon. On Sunday morning we decided to go out for an early breakfast and took Sam's bottle along to at least keep him occupied for the first five minutes of the meal. Sam promptly finished his bottle and immediately started with his insistent jumping. Ordinarily we dissuade from jumping straight after a bottle, but what Sam wants to do...Sam does. So the jumping continued and eventually our food came. I gave Sam a tiny bit of my flapjack to try and distract him from the jumping...but alas full bottle + reflux + jumping + gag reflex = EPIC ERUPTION! Sam's entire bottle came spewing out all of myself, Sam and Mugg & Bean's floor. And we couldn't just get up and leave because our order had only just just arrived. So they politely brought me a bucket of water with a rag to try and clean what I could of the partially-digested nestargel formula off my dress and moved us to another table. It just had to happen though - I am surprised it took this long.

Sam saw a urologist on Wednesday who is debating with the neurosurgeon whether to do a something-something urethrogram prior to Sam's surgery (tentatively scheduled for the first week of December). We are seeing Prof F on the 22 November again to finalise everything. 

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