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, May 23, 2012

Therapy...swinging...and Phil :)

One of Sam's birthday pressies (you know, the "just for fun"ones that have nothing to do with therapy or anything like that...ahem) was a play tunnel similar to the ones Sam's OT and ST have been trying (unsuccessfully but for one occasion) to get him to go through. We've pretty much left it open in the lounge-cum-therapy room and eventually, when enticed by Meg to follow her, Sam crawled through...and then he crawled through again...and again...and then he followed Belle through (the cat who possibly also has SPD)...until he reached the point where he was quite comfortable going through on his own...although every now and again it seems as if he has to do a little self-motivating to get there...

Boldy crawls in...

Just as boldly reverses out...

Crawls back in with a little "company" for the road...

Reverses back out to look at something on the tv...

Slowly introduces his cars to the tunnel...while still watching tv

Back in...

...and we're through...

It's always precious to see Sam making a little progress and him, quite willingly, going through the tunnel (without being lured with his iPad no less) is really quite big for Sam as a couple of months ago he would have had quite a solid freak-out!

I was a little anxious about our OT session yesterday morning - not because of the OT itself but because it was to be our very first encounter with the walker we spoke about last week. I was still very much undecided about the whole issue and really not very confident that, regardless of my own personal feelings, Sam would even go into a walker/gait trainer without a struggle...and quite possibly a little sensory regression. Well it was really kind of taken out of my hands when at first glance it was obvious that the walker was just way too big for our little smurf. The flash of relief I felt made up my mind that, at least for a little longer, I am quite happy being Sam's "human" walker, holding him around his torso as his PT instructed and spending a relative amount of time each day (albeit on my knees or bent over) allowing him to explore his world on his feet. If there is really no substantial progress with Sam's walking after his surgery in September then we can look a little more seriously at obtaining a walker for, quite possibly, both him and I by that stage :)

Sam simply loves unpacking and repacking the bookcase, according to his own specifications of course. Quite some time ago I blogged about Sam's very endearing preference of Meghan's Children's Bible as the book he would pause on and spend some time paging through....and nothing has changed in this little smurf's heart....

...for a second it looked like Billy Graham's  "Angels" might also have captured his interest...

...but only for a second :)

Sam in his sensory swing (the one that hangs in the middle of our lounge). He quite enjoys his swinging now and at least two/three times a day will "ask" to go in.

I posted this pic on my FB page on Sunday evening : Sam is a music man for sure, he adores music and rhythm, and he has quite obviously decided on who he thinks should be the next American Idol! Mommy's boy for sure xxx

Not much else is happening in Smurfville - Sam started with a really congested nose (again) a few nights ago and has had a low-grade temp over the past couple of days. At this point his little system seems to be keeping anything more serious at bay so we can only pray that health prevails.

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