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)

Monday, December 23, 2013

Sleep Wars & V-wording

 
Different for sure is our little smurfy dude.  Still totally thrown by having his little world rudely interrupted by all things Christmas. Up until Friday evening we were surviving on very little sleep, most of the night spent with distressing (mostly for me) bodybashing and a seemingly aggressive itch (without any visible rash to justify it) which bothered Sam for hours, resulting in him scratching his skin open in some places.  By Friday, desperate for sleep, we went off to the pharmacy hoping to fill a longstanding script we have for Aterax, which we first used for Sam when his sleeping problems began but quickly found that, while effective the first three or four nights (as with many meds Sam has taken) the fifth night usually ends in a major fail when the med has the adverse effect and Aterax was for sure one of the most true to this pattern. The pharmacist advised that Aterax has been unavailable for some time but, with it being for shortterm use, suggested some Allergex syrup (Chlorpheniramine). Well Friday night Sam managed eight wonderful hours of sleep, Saturday night nine hours and last night an awesome eleven hours and 50-odd minutes!!! Despite my better judgement, we've gone ahead and tried one more night but regardless, just having three nights of decent sleep has us feeling almost human again. 
 
Sam's current anxiety/sensory mix is still Faverin in the morning and Clonidine in the evening.  Even though the Clonidine doesn't really help hugely with the sleeping issues, the combination of the two definitely makes for a calmer Sam during the day. That is, when we've not upped his social exposure and aren't having a much-needed braai (BBQ) with friends one night, off Christmas lightseeing the next evening and traipsing around the night market the very next. Perhaps three consecutive nights was a bit much for Recluse Smurf and left him pretty much like so today...


 
And with heightened sensory issues comes heightened v-wording incidents. And we're saying "v-wording"because defensive gagging followed by various degrees of v-wording is once again a regular occurence during our day...sometimes caused by my rather slow transition back into being alert for triggers. Yesterday morning I took Sam into the Ladies restroom at Church and within a second realised that I usually only take him into the Disabled bathroom with which he is now familiar. Any unfamiliar environment remotely "clinical" has always been puke-worthy, even before the holidays, so only twenty minutes into the service we were leaving with a stripped little smurf and an armful of eau de puke clothes. #sigh 
 
Having our last PT session for the year last Friday, Heidi and I discussed Sam's rather dysfunctional balance and possible ways to help him adopt at least a vague sense of being able to keep his little body upright. For instance, Sam cannot keep his body upright when going down a slide...he instantly falls backwards. Even in the swimming pool, he just sort of topples over. Sam's been doing really well on working with the PT ball again which is pretty awesome and I chatted to Heidi about possibly trying him on one of those little push motorbikes, particularly because he seems quite fascinated with motorbikes and fire engines at the moment.  Fire engines are definitely his favourite, always accompanied by the most adorable signing of fire engine but while I would love to buy him a fire engine of his very own that he can ride on/in, we've gone with the toy motorbike. I think it'll be one of the first gifts he'll be really excited about...which of course makes mom excited too :)


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