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, June 23, 2010

ZERO TO THREE..... less than a week. Three being the number of teeth Joyful Smurf has acquired since that very first one made its appearance last week! Way to go, Sam, especially cutting your "teething time" down by doing 3-in-1 jobs - lets hold thumbs they all go like this (who am I kidding?). Neither Meg or Luke teethed in an exceptionally fussy way but for some reason I just expected Sam's teething to be more of a nightmare. Sure he's a little bit crabby and moaney every now and again but, taking his recovering thumbs into consideration as well, he's certainly not doing too badly at all...there's no fever or anything like that and although his tummy's a little looser than usual it certainly hasn't reached "runny tummy" status just yet. He has gone off his food a little bit, but he was never really that in-love with the Purity food in the beginning and much prefers "real" food, he even had some of my pear yesterday (obviously I mushed it up a bit for him) but gags and pulls his face when I try him with any of the Purity fruits.

Monday's appointment with the OT was relatively uneventful, they just checked that the splints weren't causing any major skin irritations and altered the left one a tiny bit after we had to tighten it some. As I type this we are just waiting to hear back from the hand specialist's rooms as we noticed that the wound on his right thumb has been bleeding again and we aren't sure if, three weeks after the operation, this is normal?

Thank goodness that alot of the food stains that were on the strap were cut off the splint on Monday after adjusting it, but you can still see proof that Sam is persevering in trying to suck and chew on this strange new thumb he's grown.

What bliss! Joyful Smurf and Silly Smurf having some "downtime" yesterday - I think it lasted a total of about seven minutes, the amount of time it took for him to turn the bucket upside two or three times and then get bored. And instead of me using the time constructively to take care of one or other much-needed house task, I spent it taking pics of him actually having the downtime!
For his birthday we bought Sam some lovely little toys that make music and animal sounds, etc. but he loves the most basic and simple one - his shapes bucket. For some reason, it just has to be upside down though - as soon as you give it to him he becomes intent on turning it around, splinted hands and all. Before his op he loved taking one of his plastic bath boats (a great buy, Dippie) and knocking it on everything from the walls, doorframes, the animals in his Noah's Ark (poor things) his head, my head (again...poor things), etc. and especially on the upside-down bucket. But with the splints on he can't quite grab the little boat properly so we bought him a little toy drum over the weekend but it just doesn't seem to give him the same satisfaction - go figure!

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