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)

Sunday, March 16, 2014

H'so Samuelson

Only eight more sleeps till I lose my not-so-airy Aircast *happydance Honestly, I really thought the 'air' in Aircast implied that the boot was super lightweight. It isn't. I was beyond despair the first couple of days thinking the injury was so much more devastating than I'd thought if instead the boot seemed downright chunky and heavy, anything but airy. Was I ever amused to finally discover the little dial and round knob-type thing actually pump air into the cast. Aaaaahhhh...air! I am at least thankful that the boot enables me to move around without crutches and I've even been able to carry Sam a little. Any time off those knees is a huge relief but he seems more and more reluctant to walk with us. So we've created a really complex (not really) little game which involves whoever is willing to walk in front of Sam chanting "Left. Left. Right. Lift" and on cue the lil smurfy dude will lift his right leg, but only his right leg. If the chant stops on the wrong leg he takes great pains to switch over.

Somewhere out there there's a village with a karate kid-deprived parking pillion with your name on it my boy! 

To say there's an element of cabin fever in Smurfville would be an understatement of note so we thought it would be a good idea to go watch the last hour of Meg's evening marathon at school last Friday night. We drove the exact same route we've driven at least once every school day over the last seven years so a vomit episode triggered by encountering unfamiliar surroundings would not be called for, right? Wrong! No.1 it was dark and No.2 we turned through a different gate. Seconds later the little dude was hurling his dinner out.  Just a coincidence,  you might think...a case of bad timing perhaps? On Saturday morning we popped down to the local traffic department to collect my renewed driver's licence (you know, in case I get pulled over while going nowhere). Pull into the parking lot, I open my door and there the flood erupts. Nevermind the Terminator... The Vominator is back, in full force. Obviously with Sam and I effectively being homebound and him not needing to deal with the usual stress he faces with any sort of social encounters, we're going to find ourselves back at square one when I can eventually drive again. Something to look forward to.

On Monday Sam had an appointment with a new Prof Paed. We were a little anxious that upon entering the rooms Sam would instantly start throwing up. Luckily there were too many distractions. New Prof Paed suggested a new reflux med for Sam which is wonderful. I've wondered for some time whether Sam's sleep issues aren't related to his reflux but honestly didn't know there's an alternative to Losec. Because there's no chance that Sam would simply swallow half a Losec mup, I dissolve it in a drop of water and add it to his food (it doesn't go through the teat of a bottle) but if the Losec is not ingested with 10-15 minutes it basically becomes ineffective and Sam seldom finishes a meal in less than 30 mins nevermind 15. So the new med, Nexium, which is still Omeprazole, is simply mixed with a little water to form a completely flavourless syrup and given just once a day. Works like a dream so I think we've got the reflux sorted. Prof Paed shared the opinion of a good friend(who also happens to be a fab paediatrician) that Sam's urinary retention issues are almost certainly related to bouts of constipation Sam's had trouble with. A quick look in Sam's ears confirmed that the right grommet has already fallen out which is a bit of a bummer. The right ear is the problem ear and tends to react the moment the grommet falls out which is why the ENT  apparently used a different tube in the hope it would stay in place for at least 18 months. It's been only 9 months since the current set was inserted :(

Sam weighed pretty much what he has for the last six months, round 15.6kg's and stands just over 95cm's tall. That's just 58cm's shorter than his mom. Prof Paed asked if he could discuss Sam's sleeping issues with a colleague which had me impressed with both his caution and humility at not suggesting an immediate remedy. On Wednesday he called to say they'd come up with a possible option called Stilnox but that he would want to admit Sam overnight should we decide to give it a try as he is wary of Sam's reaction. That had me a little anxious but again grateful for his caution. At the end of the conversation we decided to wait it out a little longer before trying the Stilnox. 

Tracey from Iris House was spending the morning with Sam so I was able to have an attentive conversation with Prof. Shortly after the call I sat with Sam and Tracey and noticed Sam slipping into a sort of 'blank episode' which he's done before but not for quite some time. I've known for a while that many of Sam's RTS siblings suffer with absent seizures but have never been quite certain whether Sam's blank episodes were the same. Tracey confirmed instantly with one look at her that it was in fact an absent seizure and then confirmed it verbally too. At least now I know what to watch out for but there have thankfully been no more. 

Meg has been off on a school camp for five days, arriving home on Friday accompanied by a snotty nose, sore throat and coughing. Not great on its own but made more worrying by the fact that we leave for her hockey tour on Thursday. We've already joked about what kind of 6-7 hour trip we're in for if Sam's going to vomit with every unfamiliar parking lot we pull into. Yikes! 

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