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, December 3, 2014


On Sunday afternoon we were celebrating with chocolate ice-cream after several fairly easy-going outings with Sam recently. On Sunday evening we were catching vomit and sporting a lovely temp of 38.5°Cish, by Monday we were not eating and now had an impressive temp of 39.4°C and by yesterday we were off to Doc Paed for some answers and hopefully the hope of some sleep in the near future.

But sleep in the near future it was not going to be...bearing in mind that by "near future" I mean NOW! Seeing as it is 10:43pm and I am blogging instead of getting some sleep before Sam wakes up.


Okay that's the end of my post. Over and out!

Juuuuuust kidding :D

So Sam has a really interesting little condition known as Gingivostomatitos which has effectively caused painful ulcers all over his gums, in his mouth and in his throat. Up until a week or two ago I might have been able to pinpoint quite easily where Sam caught the virus but over the last week and a bit we probably came into contact with close to 50-60 people and several public baby-changing rooms, etc so I fear we'll never know where it came from.

Treatment involves a 3-day course of antibiotics and a 10 day course of Lovir, which is going swell as within 2 mins Sam vomited up two doses of each med leaving us with only one full dose of antibiotic left. So we're basically running on prayers right now. It reportedly takes about 7-10 days for the virus to clear up and the virus is extremely contagious which is fabulous when you're constantly being given love and smooches by a certain Gingivostomatitos-yielding lil dude. I'm so hoping it's psychological but my own mouth has a very worrying 'sting' to it this evening :(

This is pretty much how Sam's been spending his week...really quiet and subdued :(

By yesterday I noticed that Sam seemed very sensitive to light and was rubbing his eyes alot. As Gingivostomatitos can spread to the eyes and cause permanent damage to the cornea, I am keeping close watch on those baby-blues. Struggling with the brightness en route Doc Paed yesterday, I had no alternative but to offer my sunglasses to this totally cool dude :D 

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