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)

Thursday, January 24, 2013

Sam performing Twinkle Twinkle Little Star

The sound's a little poor, so hope it (Twinkle Twinkle Little Star) comes through okay.




Rushing through Pick 'n Pay this morning, heading back towards the car I noticed (a little confused) several people smiling with amusement at us. Just before we reached the car, one lady laughed out loud and said "You're teaching them young lately!"  Sam had grabbed the Sale Ads from who-knows-where and was earnestly perusing what the specials were and, with him insisting that the canopy always remains down, I did not even notice. Sam's really into numbers and letters now so there's a small chance that that's actually what drew his attention...but, hey, let's go with the reading thing. 






Why I'm desperate for him to walk...by the end of each day, his knees are red and blue, swollen and horribly chaffed :(

Monday, January 21, 2013

Little Emma desperately needs your prayers

Below is a link to a page from the Little Fighters Cancer Trust, written by a Mom who has watched her little girl courageously fight the cancer that has ravaged her body so many times over the last few years.  We've heard that Emma has taken a turn for the worse - she is in desperate need of prayer and, really, a miracle.  Please take a few minutes to read Emma's Story and, gosh, shut your eyes for the mere five seconds it'll take to say "Dear Lord, please heal Emma"

Thank you xxx


Emma (left)

Friday, January 18, 2013

Great Expectations

So, in prepping for the upcoming year, I sat down with Meghan and chatted to her about what we expect from her this year...good grades, more responsibility regarding tidyness and helping around the home...you know, the same things we've been "discussing" for the last four years or so. Of course Meghan took the conversation very seriously....for about the two minutes it took her to reach the front door so she could happily resume the bicycle & hula hoop races, hand tennis games, treehouse building, archery competitions and the like which have kept her and her neighbourhood friends entertained literally from sunrise till sunset, almost every day of the holidays when we were at home. 


Yip...this sure looks like a kid who's snapped out of holiday mode

Then I sat down with Samuel and shared our expectations for him for the next eleven months. There were no biggies, just a few minor things like learning to either hold his own bottle (Oh, yes please!) or at least a sippy cup...AND.....learning to walk. Now that we've mentally prepared ourselves for these events, we've gone full steam ahead into the necessary "training" required for both of these conquests.




So the sippy cup task is going well! Sam's aversion to holding his own bottle is just so completely mindblowing.  I've discussed the matter at length with all three of his therapists but no-one can really say for certain what the problem is.  There is definitely a major sensory element involved as he's on the verge of gagging if I try and place his hands on the bottle.  There's also a co-ordination and a simple physical ability element involved as Sam cannot grasp the bottle securely in one hand with his little thumb but still mostly neglects using his right hand unless you remind him that it's there when you see him battling to do something with just his left hand. While he seemed relatively willing to touch the sippy cup, albeit quite gingerly, he would not allow me to put the spout anywhere near his mouth.  There was a time when I could squirt little sips of juice, etc into his mouth from a squeeze bottle but he's also stopped tolerating that.  So....perhaps it will be easier for me to learn to deal with the awkwardness of having strangers look on with confused and (too often) disapproving faces at me bottle-feeding my almost 4 year old son.    

With Brampies having moved out at the end of last year, working through each day's chores has become quite challenging so it's been wonderful to have Meghan helping out with Sam where she can. 



Don't worry - he's face looks like that when I feed him too...LOL

Sam has become delightfully brave at attempting new textures with regards to food. Of course there has to be at least a one-step-forward-one-step-backwards balance with Sam, so he's not too keen on the squeeze bottles anymore but while reclining comfortably against me while I sat eating my supper one evening, a little hand reached in under my arm and helped himself to some of the food off my plate. The very next evening Sam sat at the counter while I grated some cheese and after I pushed the plate out of my way and, unintentionally, within his grasp Sam helped himself to a handful of cheese as well.  Unfortunately though Sam eats extremely slowly so when we're reaching the forty-five minute mark on a "solid food" meal, I resort to pureed food rather just to make sure he's getting enough nutrition. 

I am so excited about Sam's signing at the moment...although he first had me a little worried.  I've tried to teach him the signs for the things I feel he would most need to communicate to me...like "more" which he picked up a while ago, "bottle" (although it's a Sammified version of bottle as with many of Sam's signs and I am not sure anyone outside of our home would know what he's indicating) and most recently, "sore".  Now "sore" and "more" not only sound the same when verbalised but have really similar signs too.  Sam easily copied "sore" the moment I showed him but then started using it for "more" as well. Typical, I thought, not only did I NOT teach him "sore", I've now confused his "more" as well. 

"Sore"
 
"More"
 
 
Sam, however, painfully reassured me that he had in fact mastered "sore" when he knelt next to me while I packed his toybox away one afternoon and just as I closed the lid, stuck his hand in and got his little finger caught. While crying hysterically, he frantically signed "sore" over and over.  Not the most charming way of having to find out but it certainly made me realise that I still tend to underestimate our little smurfy dude sometimes.  I am loving that he can tell me whenever he wants a bottle, even though he seems to be having so many more bottles a day than he used to...I can hardly tell him "No" when I am trying to show him that signing will help him get across what he wants.  Which makes it quite difficult to decide how to react when I put him into bed at night and each night brings with it a new "ailment" as Sam protests unhappily while signing "sore" and then points to his teeth...or tummy...or knee. Ai!


The Sammified version of "cry" - we are often ordered to cry for Samuel's amusement, especially Meghan in her most melodramatic manner. And often, while he is crying, Sam will passionately sign "cry" just to avoid any misunderstanding that he is, in fact, crying.
 
As you can see in the above pics, Sam's had another vomit-inducing, shriek-yielding haircut during which he emptied his entire evening's sustenance, including his Faverin, pretty much over everything within a 5m radius...which would include me, as usual. And that is not good.  I've completely stopped Sam's Melatonin as it was just making no difference whatsoever to Sam's sleeping and was not worth the trouble it took to get into his system.  The Faverin, however, has proved hugely successful so I take great pains to ensure Sam gets it each day...and keeps it in.
 
    
Random Pics :
Happiness

Fun
 

Awesome evening walks (Stilbaai)

Tuesday, January 1, 2013

Desperately Seeking my Mojo


Smurfy wishes for an awesome 2013 everyone :)

I seem to have misplaced my blogging mojo a few weeks ago. It's quite possible it got washed out with the litres-upon-litres of vomit (bleghhh) we were shovelling four to five times a day towards mid-December, when Sam struggled through possibly one of his most health-challenged periods. After 9 days of unbreakable fever, no eating, loads of slime, coughing, croup and of course the relentless v-wording it felt like we'd never see a healthy Sam again. 

Needless to say, this trial too passed and Sam was healthy enough for us to go spend a few days in Stilbaai with family. 


While Sam was sick, the only activity which seemed to keep him calm and comfortable was "going ta-ta" so at least once a day, after he'd gesture towards the garage waving his little hand eagerly, we'd take Sam for a no-destination drive.  Thankfully the "ta-ta bug" was still biting on the way to Stilbaai so Sam had no trouble enduring the lengthy 4 hour drive. 


Sam's been prone to lovely 2hr-long afternoon naps lately and with Dad being on holiday too, he eagerly took advantage


Meg and Chrisna waiting for the 2hr-long nap to end so that they don't have to be on noise restrictions any longer

Sam loving the 3-way chair enjoyed by his uncles and cousins over the last 35 years (Yes, really). Sam's Buzz Lightyear car had to of course be brought with, along with several other toys and favourite dvd's, to keep Sam's environment as familiar as possible.


On Friday afternoon we drove out to Sam's cousins, Cayla and Dewald, in George.


Sam was keen to join them in the pool but settled instead for some sideline flapping which left him just as wet anyway


Both Dewald and Cayla insisted on giving Sam one of each of their toys.  From Dewald Sam got this really awesome light making, noise emitting, vibration yielding object. 

And from Cayla, one of her babies :) to keep Sam company along the 2hr drive back to Stilbaai, along which Sam finally lost his "ta-ta bug"

For the first time in a long time, Sam had a really good night's sleep on Friday night.

Which meant we could hit the beach before 8am already to avoid both the extensive crowds and sweltering heat



All beached out and ready for breakfast in his Smurfy towel


Sam slept really well on Saturday and Sunday evenings, waking just before 10am yesterday morning. He was so keen to see the New Year in though that he was awake from just after 12am till just before 5am this morning...but is making up for it by still laying fast asleep right now.

Enjoy your New Year's celebrations everyone....here's hoping I stumble across that darn blogging mojo soon xxx