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)

Wednesday, September 28, 2011

Camp-say-whosey-whatsit?

Yesterday morning we had our much anticipated follow-up appointment with Sam's hand surgeon to a) check that the bones in his thumbs are still growing straight after last year's procedure and b) to have a look at why those little smurfy fingers are growing in a bit of a funky curve. The entire appointment took two hours...which ordinarily would be a little frustrating but throw in a blessed outcome and it becomes less frustrating and so much more worth the trouble.

Firstly - Sam's thumbs, although not completely "normal", continue to grow in as straight a manner as possible, ie. no regression to growing skew again. We will still have to look at repeating the operation when Sam is five but should Sam seem to have a relative amount of functionality at that time, I am not too certain we would go ahead with the surgery.

Secondly, Sam has a condition called Camptodactyly in three of his fingers on the left hand and two fingers on the right hand. I was certain the remedy would involve a surgery in the near future, but amazinly Dr C feels nighttime splinting might be aggressive enough to correct the fingers. So, most of yesterday's two hours was first spent trying to get remotely accurate x-rays of the thumbs and then a good sitting at the occupational therapist to fashion a splint for Sam. The only problematic issue is that take one little smurf + some serious sensory issues = not great success with handling of hands/fingers....as the poor OT discovered yesterday while trying to mould the splint on a squirming, screaming Sam. I decided that I would wait for Sam to fall asleep last night before putting the splint on but eventually didn't go through with it because for the first time in a long time Sam fell asleep relatively easily and seemed quite peaceful. Taking into consideration the difficulty we've had over the past few weeks to first get Sam to sleep at night and then to keep him asleep, I decided not to rock the boat on the one night it was all going well. Tonight though, regardless of all of this, I am definitely going to put the splint on - "Oh Happy Days"

It looks like Spring has finally sprung here and Sam and I have celebrated with an occasional morning walk, although Sam looks more like he's going on safari in the North Pole (if there is such a thing) instead of a quick stroll around the block.



Spring or no Spring, the morning air is still quite nippy and we are (touch wood) off to Stilbaai for the weekend so can't have our little man getting ill now.

Sam seems to be getting back into the OT swing of things  (pardon the pun) and gave Pippa a much easier go of it on Monday morning, although I think it is much more Pippa's "special" way with Sam as opposed to Sam putting in a whole lot of effort. Tsk Tsk....if it was easy, it just wouldn't be Sam!

I have to rush off as my spirited little boy, amongst all his new-found abilities, has learned how to throw a "fake" tantrum by forcing out a really exaggerated type of cry/grunt/shriek...all because I refused to let him sit on my lap and press on the pc keyboard while I am trying to update his blog :)

2 comments:

  1. Such good news no surgery whoop whoop!!!!!!
    What lovely pictures especially love crocodile Dundee...have a wonderful weekend.....

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  2. Lovely picture of Sam,seems like ages since i saw him.like your hat Sammy.../Listen,Mom you play with my IPad so why cant i use your PC,mmmmmm,not fair hey.

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