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)

Thursday, November 8, 2012

Smurfy Jive : Sleep Wars (2) : Any thoughts?

So we had four really good nights last week with very little sleep-jiving going on and when it did, it would last for 30secs to a minute, max...especially Saturday night when Sam did another awesome straight sleep through until just after 5am.  From Sunday evening though we were back to the very challenging rocking/spinning/jiving/whatever-you-want-to-call-it with another awesome three hour non-stop session this morning till about 4am.

I cannot for the life of me figure out what was done differently between the two nighttime scenarios as I am trying super hard to to keep Sam's days as strictly routine as possible. 

Below are video's of the two different types of rocking/jiving that Sam does...this is the "good" version which he does when he's merely trying to fall asleep. At least here I can still try and communicate with him and attempt to soothe him. At night however he seldom wakes up during these little jiving sessions and is far less cautious, eventually banging his head into whatever hard surfaces he can find.  And if you try and restrain hin or place something soft around him to cushion the blows, he becomes even more agitated.

The videos give a rough idea of the type of movement Sam does...I am really desperate at this point to find out if there any other children from our RTS/special needs family who do this?


  1. Ok, Nicky, here are my thoughts. I don't think that this is anything that YOU are doing, or even SAM is doing intentionally. I am going to strongly urge you to pursue a sleep study. When Stephen had apnea the first time, he was just a little younger than Sam at diagnosis. He would be awake for HOURS during the night, rolling around in bed, or spinning, or just generally NOT sleeping and being angry. What the doc said was that their brains can start fighting falling back asleep as a defense mechanism against the apnea episodes (which is what we are dealing with again now), but they are SO angry and frustrated with not being able to sleep. I can't even tell you the bruises I had from Stephen beating on me while I was trying to get him to go to sleep. And as you know, the sensory issues get SO much worse when they aren't sleeping, so that probably explains it as well.

    I think the actual behaviors are pretty specific to Sam, but I think it's indicitive of a common, underlying sleep issue. Please, please, please do the sleep study to see if more can be done to help. I know what it's like to really suffer from lack of sleep, I do, and I want you guys to get some rest.

  2. I also wanted to mention that Stephen would move around like a crazy person (not exactly like this), to KEEP himself awake. He still does it sometimes, but he's more refined - he just kicks his leg around to keep himself awake.

  3. Mwah Patty :) Just made an appointment for Wed morning with Sam's paed to discuss arranging a sleep study X