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)

Monday, April 29, 2013

A muchness of nothingness

Woo Hoo! A post! It's as much of a surprise to me as it is to you, believe me, what with the little smurf still recovering and all. Nope, not from his ENT procedure but from still being ill. Still? Yes! Still! I can't even remember how long it's been now since we last experienced the increasingly elusive state of (relative) good health. I think we're floating somewhere round five or six weeks already. I know Sam and I did a straight few weeks of not leaving the house once...not at all...not for a minute...not for a second. NADA. It was...uuhhh...interesting, for lack of a more blog-acceptable word.

We're still all snotty...and coughy...and tonsilly. "We" being Sam, although the fact that it effects our lives as much (although not in the same way) as Sam's, makes it a definite "We". I can tell you one thing we are NOT! And that is vomity! Want to know what makes that even more surprising? We are currently on Day 4 of an antibiotic. (Yes, another one).  Want to know how much of that antibiotic has been v-worded out? Not a drop...not a mil...not once....not at all. NADA. Why? Because for the first time in almost four years someone (who is always in-tune with Sam's sensory and v-word issues and generally goes by the name of Dr Paed) had the sense and expertise to prescripe an antibiotic for our little dude that comes in the form of a solutab. It dissolves instantly and has very little taste. At first, just to be safe, I camouflaged it in some yoghurt but yesterday simply mixed it in with his normal food and Sam polished it off without hesitation. Absolutely brilliant. #touchingwoodfrantically

And that's where we're at...which is nowhere at all really.  Dr Paed is uncertain whether, even though they're being a little troublesome lately, removing Sam's tonsils is a good idea at all.  Sam's really been struggling at night with this whole "floppy airway"' issue which many of his RTS siblings experience problems with.  Dr Paed is concerned that the tonsils are at least providing some sort of support at the moment, as warped a support as that may be, preventing the airways collapsing completely at night.  We've considered the option of doing a sleep study with painful care, but there is absolutely no way Sam will tolerate a sleep study right now. He barely tolerates me touching his face. CPAP's and the like are even less of an option.  So for now we trudge along, hoping that there might be some relief, in the way of no illness/germs, making its way to us some time in the near future.

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