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...
SAMUEL - COMPLETE IN GOD
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 happening....to 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, January 4, 2011

And the doc says......

that he thinks Sam is experiencing a combination of three issues at the moment being

  • Major separation anxiety (I have the nail marks on my neck to prove it from when Chris or my dad try to take him from me). This explains the repeated waking up after he's gone down for the, supposed, night and why, if I put him in the bed, he settles down.
  • The almost anticipated trauma of the surgery added to his already fragile sensory issues.
  • And, perhaps most importantly, he is quite certain that Sam is still in quite a bit of pain, which is why he startles and jerks/flinches so much. He does not think that only keeping Sam on the pain meds for four days was long enough and advised that he can stay on for at least another week.
After trying to find several fairly lame excuses to hang around in Dr B's rooms a little longer than needed (Oh the luxury of air-conditioning), we headed home and immediately I gave Sam some paracetamol. He still cried himself to sleep while we did the carpet-pounding this evening but obviously pain meds aren't going to help with separation anxiety which, like with Meghan (who still cried every morning when I dropped her off at school until the 3rd term of Grade 2) I will just have to see the process through. He did wake up about 45 minutes after falling asleep, I picked him up and lay with him in my arms....he fell asleep.....got up to put him back in his cot (just so I could at least put my pj's on and get Meg to bed) but he woke up straight away....lay with him on the bed again and he fell asleep within minutes, but this time lay him on his own pillow so he wouldn't feel me loosening my grip on him when I got up.

Other than the pain issue, we are trying to get an appointment with either one of the two OT's I was told about by Matthew's mommy and Aunty Mandie, who ever can accommodate us the soonest, to finally start getting a handle on this sensory/reflex issue.

And of course having our temp's sitting at 34deg (93ºF) just helps HUGELY! No matter how much it cools down in the evening though, our house stays as hot as an oven so we're all pretty well baked by now! Gosh...how many days left until Winter?

And, of course, ending on a high note - Sam weighs 8.8kg's!!! I really thought he would've lost a little bit of weight especially with not eating or drinking properly straight after surgery...but it looks like he didn't - how awesome! He's weight chart looks amazing....for the first 17months it stagnates most of the time, but has an occasional spike and then all of a sudden you get this lovely steep incline! Well done Conqueror!

2 comments:

  1. We deal with this exact same thing 2-4 weeks after every surgery. I hope things soon get back to "normal" again.

    Unfortunately, the fear of laying flat on an exam table still freaks Nathan out. We didn't sedate him before going into surgery last time because of the risk of his airway collapsing and that's when the fear of laying flat set in. But we keep pushing through and hopefully he will out grow it.

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  2. Oh, poor Nathan. Doesn't your heart just break for these angels sometimes? It's traumatic enough as it is without having to face lying on that table without any pre-meds!

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