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, August 15, 2012

Smurfville under attack....

...serious attack...nasty BUG attack!, that's a picture of me from last week...not the seriously nasty bug in question.

Last post I mentioned that Sam had been ill with a URTI.  Sam just seemed to be recovering, when I got sick last week and by Saturday Sam was all congested again, coughing by Sunday, gagging when eating by Monday morning and all croupy by Monday evening . I first tried to treat him naturally (because that usually works well?) as he'd just finished a course of Orelox but once we stumble across that croup-bark, we're heading for trouble.  So off to Dr B on Tuesday in the middle of a mini-storm with gale force winds and rain a-plenty.  Now usually all the mom-and-tot parking bays in front of Dr B's chambers are taken...all eight of them.  You would think eight mom-and-tot parking bays would be ample with there being only two paediatricians in the building.  But apparently not. What is, however, in ample supply is the number of people who have no reservation parking in these bays even though they are visiting the centre completely and utterly child-less.  The last time we had an appointment with Dr B I pulled into the parking area behind one other car, a white Jetta, just in time to see the driver pull into the very last M&T parking bay. I then watched the childless, 40-something-year-old woman trot fitly up the stairs to the entrance.  Had she at least shown some sign of physical hardship or disability I would have insisted she take the parking in any case. But such random acts of inconsideration usually means I (and several other folk I'm sure) land up having to park at the actual hospital itself and walk across to the completely separate building, awkwardly carrying 14kg's of smurfiness.  Here's a hint though to all those M&T snatching drivers...usually when a parent visits a paediatrician's rooms with...horror of actual child on the arm...there's a really good chance the actual child is actually sick so having to walk from one building to the other is not always such a great idea.  Dare I even open that can of worms concerning disabled parking bay snatchers? Nope, we'll save that for another post. Yesterday, with the awful weather, I decided to leave for the paed's rooms super early so that I had time to wait outside the entrance for one of the M&T parking bays to become available...and fix the potential offender with a particularly scathing glare, if necessary.  Pulled into the parking area twenty-two minutes early and straight into an available parking bay, literally in front of the entrance.  Ouch!

After the usual luvin' Dr B bestows upon our little conqueror at the beginning of every consultation, he confirmed tracheitis (infection of the windpipe) and croup and sent us packing with another ten day course of Augmentyn (Double Ouch) and some cortisone (not enough Ouch's for that one).  Sam + cortisone make for a very aggro little smurf so the past couple of days have been fairly entertaining...first with Sam's relentless coughing when he eats...drinks...sleeps...breathes...and now with him being unconsoleably miserable.  And of course, excessive coughing coupled with a problematic little esophageal valve makes drinking of bottles and mealtimes just that little bit more exciting. The Academy award-winning performance was definitely Sam's total meltdown at 2am this morning.  He'd woken up crying, coughing and bunged up and with little lips ruby red and so dry they were shining, from breathing through his mouth. I tried to put a little coolled, boiled water in his mouth with a syringe (because of course Sam allows nothing passed his lips but Pediasure bottles) but in his half-asleep daze Sam must have thought I was trying to give him medicine and started crying hysterically...and carried on like that for a good hour with no amount of hugging and comforting being able to calm him down.  And of course at the end of it all, he eventually fell asleep with an even more bunged up nose and not a drop of water in his body.

Usually by Day 3 of the antibiotics and cortisone, there's a marked improvement so here's looking forward to tomorrow. I can't quite recall what sort of Winter Sam had last year (now if only I had some form of journal or electronic medium consisting of regular entries about the details of our lives, to which I could refer) but he wasn't doing too bad this year till this last month. Only four or so weeks to go and then hopefully we're heading towards some warmer weather. Oh my...and the daunting prospect of moving house which at this point looks like it's going to happen sooner than the end of October. Of course, with the passed two weeks revolving almost solely around illness there hasn't been much time to attend to all the details...and inevitable stress.  But perhaps that's a blessing in disguise.  There definitely has not been enough picture-taking and that is something I'll have to see to soon.

There has been one seemingly small but so hugely-significant conquest for us.  As mentioned previously, Sam's spatial awareness particularly with regards to his body, is simply apalling.  I had watched a video of one of Sam's RTS siblings, Brooklyn, enjoying a popsicle which she'd been holding herself and thought that perhaps if I persevered a little more with Sam, trying to get him to at least put an occasional food or treat in his own mouth, it might just improve the spatial awareness surrounding his face and, in turn and really the main aim, improve his fine motor planning with regards to handsigns meant to be displayed round the face. We have just recently discovered the Nestle baby treats on the market, specifically the little juicy chews which are incredibly soft, non-gag inducing and very Sam friendly, as well as their own mini-version of cheese curls. I first tried blatantly putting them in a bowl and offering them to Sam but of course he was not about to place that sensory-defensive little hand into a bowl of strange textures. Plan B was to put Sam's favourite dvd on, have him stand up at the tv unit and scatter the cheese curls randomly across the surface. At first I had to completely manipulate Sam's hand myself to pick the cheese curl up and place it in his mouth but after just a few guided attempts, he was quite confidently doing it himself.  Now he even manages to navigate the small little juicy treats, clasped firmly between his little angulated thumb and index finger, into his mouth.  He still won't pick the food/treats out of a bowl, but will happily take them when offered from my own hand or a flat, open surface like a food tray, etc.  Baby steps are just fine for now anyhow and although there are still some hopelessly out-of-place signs, there is also a definite improvement with signs like "crying" and "pig" now being displayed on Sam's forehead as opposed to on the side of his head. Like I steps :)

1 comment:

  1. Having sick kids is the worst! Especially for our little sweeties.