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, June 11, 2012

Progress vs Regression

Life with Sam...and in general really...has been a little hectic lately - a relentless whirlpool of studying, therapy, ballet concert practices, way too many failed shopping trips, way too few hours in the day, sensory progress, sensory regression and, as always, an unwelcome v-word session or two :) Not made any easier by the fact that Sam's sleeping (Surprise! Surprise!) is still very eratic which doesn't leave much blogging time (or any other time for that matter) during the day and a severe lack of energy, concentration and, quite often, awakeness (on my part, not always Sam's) by 8pm in the evening.

So let's start with the sensory stuff....particularly the "progress" part. For a very, very long time Sam has been tactile (among other) defensive...particularly with balls and balloons. Sam absolutely refused to touch any ball...regardless of it's size, colour or texture. A game of "catch" with Sam would simply involve the ball being rolled to him and Sam nudging it away with the back of his hand, in the direction of someone else who he would then instruct to pick it up and throw on his behalf. A couple of weeks ago Sam slowly and cautiously ventured holding some of his ballpond balls and now occasionally will even (albeit momentarily) hold a spikey or rubbery ball. He still requires a whole lot of motivating to throw the ball but, hey, progress is progress :) Such a basic yet fun interaction a parent takes for granted is being able to play ball with their child so when it's something you really have to work towards, you appreciate it just that little bit more.

And...the regression. Sam has never loved the sound of a vacuum or hair clipper or any of those appliances. In fact, he gets upset if he can even just see the vacuum whether its on or not. But one thing he did seem okay with was a hairdryer. Not that I ever tried to use it on Sam but I could at least sit him in his cot while I blow-dryed my own hair in the same room, without much ado. On Friday evening with the weather being a bit chilly and Sam's hair getting a bit long again I decided to try and blowdry his hair after this bath. To which Sam's prompt reaction was to gag the second I put the hairdryer on and then vomit all over the bed and everything on it. Last night, after Meghan washed her hair, she dryed her hair with the hairdryer in her own room with the door closed while Sam and I were in our bedroom with that door closed and still Sam cried and moaned and pointed anxiously at the door the whole time the hairdryer was on. So for now, balls are in...hairdryers are out.

We have found a temporary solution for the endless struggle to perform basic tasks like change Sam's nappy or dressing him. I say temporary because, if history is anything to go by, if it's a working solution that stays a working solution it just wouldn't be Sam :)  Trying to change Sam's nappy or get him dressed, etc has become a nightmare. Anything that involves Sam lying on his back is a no-no and believe it or not trying to change a child's nappy while they're standing up is just not that do-able...and yes, I have tried. So in pure desperation one day I grabbed the iPod which is mostly filled with kiddies songs and pressed the headphones to Sam's ears and....WooHoo...Wriggly Smurf became Placid Smurf. So now we've found a set of headphones which better fit those elf-like little ears and the iPod lives on the bed which makes for much more relaxed changing and dressing times...although you have to be super quick with vests and shirts obviously.

You can tell which song Sam is listening to by the relevant actions...
"If you're happy and you know it" in this case

Some more regression : about three weeks ago I noticed that when I had Sam on his feet, he would almost always keep his right foot on its toes and Sam's PT mentioned to me that she was really struggling to stretch Sam's right foot and leg. We discussed the possible causes, the scariest being a possible re-tethering of the spinal cord as I have noticed that Sam continously touches and fiddles on his scar. The following week Heidi remarked that the tendon had in fact become even more difficult to stretch and that now she was quite confident that, with Sam not walking yet, the lack of weightbearing was causing the tendon to stiffen which could ultimately start causing some serious problems in the future. I mentally kicked myself for shying away from Sam using a walker/gait-trainer....Sam's physical needs far outweigh my emotional struggles. 

Followed by some more progress : I left the PT session determined to find a way to get Sam "walking" and so every day since then spent two three hours (in stages obviously) walking Sam around the house and garden. Well...every day except for last Tuesday when my back and chest muscles protested furiously, leaving me out of action for almost the whole day. But on Wednesday it was soooooooo worth it when I walked Sam into his PT session...on two completely flat feet :)

And a random "so cute" moment when I left a basket full of laundry in Sam's play area and Sam sort through all the other items, very few his, and then purposefully picked out his blankey while leaving everything else discarded on the floor.

Venturing out in public with Sam has become such an anxiety-filled struggle that we seriously procrastinate about having to go into shops, etc and often resort to one of us staying home with Sam while the other attends to the necessary tasks.  With quality time together being really limited at the moment, having to re-think a basic trip down to the local shops or even attending a church service has become quite sad.  While Sam's iPad is still useful, to a point, in distracting him it is not always possible to carry with to a shop and, understandably so, not always seen as appropriate in places like church or a restaurant.  Hopefully there'll soon be a "progress" note to this particular regression :-)

In the meantime we have found an activity which both Sam and we as a family enjoy and relaxes Sam so much that he usually spends the majority of the outing asleep...

Mommy's super-precious little smurf xxx

1 comment:

  1. Hugs Nicky. There are sooo many days like this where it seems backwards is the only way our child's world goes. But eventually there is a forward movement again and we are encouraged. I have to constantly remind myself during the backward days that "this too shall pass" and one day in the future I will look back on this and barely remember it. You have been so consistent with Sam and I pray that he can overcome this extreme sensory thing and settle down to learning and growing. Hugs, Cindy