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)

Tuesday, November 25, 2014

To Risperdal or not to Risperdal - Part 2

So it's a funny story...well maybe not so much funny as humorous. Okay, maybe not as much humorous as WHAT.WERE. YOU. THINKING...ISH...Y(?)

Still lost with the return of our bashing-filled nights and increasing number of behaviour issues (now having added teeth-grinding to the list) I asked Doc Paed if he thought the Risperdal could be the cause of much of our issues and whether I should try weaning Sam off it. Surprisingly Doc Paed's reply started with "Perhaps the Risperdal should be upped, not stopped..."

WHAT? NO!!! A million times NO! I'm still coming to terms with the original prescribed dose and the mere fact that my 5yr old is even on an anti-psychotic medication. Mmmmm...about that 'original prescribed dose' though. You know, the one that I independently decided to decrease to the recommended dosage per weight in the always-studied pamphlet, as opposed to the dosage prescribed by the qualified, over-efficiently experienced paediatric neurologist. And which independently modified dosage was based on an almost 4kg lighter lil smurfy dude!

So, increased Sam's dose of Risperdal to what was originally prescribed and, although we've had one or two iffy hours occasionally, sleeping on the whole has improved. So mom doesn't always know best...who woulda think it!

The headslapping and irrational reaction to people moving around him remains, accompanied now with the teeth-grinding as mentioned, but they seem a little easier to tolerate when one's had some sleep xxx

1 comment:

  1. Hi There, I just spent a little time reading through your posts. Please continue to write more because it’s unusual that someone has something interesting to say about this. Will be waiting for more!