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 22, 2011

Welcome Back, Smurf!

We're still doing the congested nose and occasional coughing fits but for the most part of it, Sam The Conqueror is back in full swing, which means untidying whichever room he happens to be in, playing, watching tv and unrelentlessly terrorising poor Biebie (Meg's kitten). Who could have imagined that such a tiny little smidge of person could wreak so much havoc even though still limited to all fours. Drinking and eating is still a little tricky, what with his blocked nose - I've given up on suctioning him for now because it inevitably ends in the v-word.  We have both a Nosefrida and Benny Vac which we use to suction Sam. The Nosefrida is obviously a little more "gentle" but the fact that I am literally sucking Sam's germs into my lungs freaks me out a little. When Sam's mucous levels reach epic proportions, we revert to the Benny Vac, but Brampies is convinced that it is painful for Sam due to all the screaming that always accompanies me using it. So painful that the second you turn the vacuum on Sam starts gagging? Me thinks not. But, just to reassure Brampies I had to do a bit of a weird experiment - yes, you guessed it, I suctioned myself! While it certainly is a really unsettling sensation, I can say firsthand that it is not painful. But with an already low tolerance for unsettling sensations, I decided to limit the Benny Vac-ing as much as possible, so we're relying now on good old Sterimar. If only I could get Sam to blow his nose.

Well, this little smurf motors all over the house on his hands and knees. I think his crawling skills are being super-tuned by his continuously trying to catch both Belle and Biebie...and don't ask me how he manages, but at least thirty/forty times a day he actually does get a hold of them and tries to de-fur them. How he has not ended up with severe teeth or claw marks is beyond me. Belle (being the elder, terribly cantankerous of the two) eventually gets fed up and moves out of reach but Biebie! Poor Biebie! She is so desperate for someone to play with while Meghan is at school that she just keeps coming back for more...and more...and more. Luckily Sam and Biebie hold no grudges against each other and still enjoy playing games together :

Sam manipulating his plastic balls through the bars of the gate for Biebie to chase.
(Never a missed opportunity for therapy, folks.)

Taking a breather :)
(Although Biebie watches Sam's hands carefully so she knows when to make a run for it)

I am slightly wary that my little smurf is fact becoming a tv addict. He is doing great balancing on his knees at the moment (although almost refuses to be in a "walking" position anymore) and will
sit like this and watch Brainy Baby for ages.

Completely zoned out!
Another one bites the dust - aaarrrgggghhhh!
I have tried actually sitting with him and working through the colour, number, alphabet, etc games they demonstrate in the dvd, but Sam just won't have it. First of all, if the tv is on you can forget diverting his attention. And when it is off? He continuously points at it and the remote!

A friend asked yesterday how Sam was doing with OT. I said that unfortunately with his being ill we've basically been therapy-deprived over the past few weeks and that although he's definitely feeling a little more confident venturing out and about the house,  he is still refusing to do things like hold his bottle or handle his food, chips, etc. Barely an hour later I was trying to cut a packet of Niknaks off a strip to give to him but at the same time Sam was trying to push close the drawer I was working in. In my haste to free the chips quickly in order to avoid Sam banging his fingers in the drawer, I cut incorrectly and the entire packet of chips went flying all over Sam and the floor. I giggled to myself and thought "Now if Sam was any normal child, he'd be picking the Niknaks up and eating them right off the floor before I could clean them up!"
Sam gingerly picked up a Niknak, studied it for a second....and promptly put it in his mouth!

1 comment:

  1. I enjoyed reading your post. It's an update for me as I've been out of the lop for a while. Your little smurf is doing amazingly well and I really enjoyed the pictures. Who doesn't love TV?