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, January 1, 2014

The Lighter side of Sensory Processing Disorder

Sam's newly acquired aversion to the sound of running water and, more importantly, the sound of running water hitting any kind of surface has become quite entertaining.  Last Sunday Sam had another vomit session at Church (Yes, really #sigh). The first thing we did once he stopped puking was walk him over to the outside tap to try and wash off his hands, hoping to make transporting Pukey Smurf a little less challenging. Well the poor kid jumped a metre high when the water hit the paving outside, almost starting the puking all over again.
This interesting new twist has kind of put a damper on my wanting to try Sam with some potty training this Summer.  I thought the least "pressured" step we could take would be to let Sam have a wee in the garden.  Well two major problems with that one a) he won't stand on the grass and b) that would entail him having to tolerate the sound of his wee hitting the grass.  It just ain't gonna happen folks. Quite amusing is the fact that he has taken a liking to having a whizz on the bathmat at night while I am undressing him and the sound of the little pool forming on the mat does not seem to bother him just one bit.  So the only thing I could think of was a fur-lined potty. JUST KIDDING! Well kinda, if I thought it would work I'd certainly try it.  Just for laughs though I googled fur-lined potties and actually found one! Unfortunately the fur would have to be at the bottom as that plastic bottom would definitely make for some serious startling. Nevermind the laundering challenges that would pose, although having to wash the bathmat on a daily basis is not much fun either.  

Luckily most of the moms on the Sensory Processing Disorder site have shared that trying to get SPD kiddo's onto a potty is almost impossible so we are being spared the epic fail that would come from fur-lined potties.
More seriously though, this SPD thing has us beat at the moment.  First there was RTS and having to adapt to a set of specific challenges.  Then 19mnths later, having just started feeling like we were sort of keeping head above water in the RTS ocean, along came SPD.  There, but pretty much in the background with the exception of some conquerable little quirks like keeping Sam away from sunlight (which caused him to scream as if in pain), making sure his milk was always the exact same temperature, etc etc while we still grappled with the more serious RTS issues like a tethered spinal cord, undescended testes, etc.  Then after that first testicle repair all of a sudden SPD was right up front giving RTS a remarkable run as most puzzling condition.  And now? Now Sam's sensory issues are by far more perplexing than his RTS issues. Why would the SPD issues be troubling us more than the RTS issues? Because, to a certain extent, we are at least prepared even if on a shortterm basis, for what to expect...what to look out for with RTS. But oh my gosh, no such thing with the SPD.  Sam's "symptoms/triggers" are changing almost on a daily basis. It's like having a different "condition" to master every morning, a different little person to nurture and securely guide through each day...every morning. It's pretty darn exhausting I tell you.
All of a sudden we are doing loads of gagging and then inevitably, throwing up again. Last Sunday we attempted to sit with Sam in the baby room during the Church service as it was empty.  Sam has not been in there for a while, maybe two months at the most, but there was a stage where that's where we sat with him every Sunday. Everything was going okay until I decided to move from the chair onto the floor with him, again what we would usually do most Sundays. And for some reason transitioning onto the floor has now become a major gagging trigger, even here at home since then. 
The v-wording thing is really hard for sure but Church being a gag/defensiveness trigger? Without a doubt one aspect I could least come to terms with. 
And as baffling as Sam revisiting his extreme fear of being moved around (we did this almost exactly two years ago when I struggled to get him into and out of his carseat, etc) is this....

For the first time in twenty-eight months he is quite comfortable with moving from his knee-walking position into sitting on the floor again..all on his own.  Not only that but about a week ago Sam started standing up, completely unsupported, on the bed.  I've tried desperately to take a pic but I am so scared of losing sight of him and having him somersault off the bed that I haven't quite captured a clear shot yet.  He can only manage about 10-15 seconds but each and every day his balance improves and he can more easily right himself when it looks like he might topple over. sum it up, having mom or dad lift him from the couch to the floor is an absolute gag-worthy No No! As is running water and the bathrooms and baby room at Church.  But suddenly sitting all alone is like so blasé as is standing up for the first time EVER!  Baffled? Yip, me too!
Sometimes I wish with all my heart I could simply ask Sam what troubles him and what I can do to make it better.
But I can't.
I don't speak Smurf :(

One of Sam's Christmas pressies :
I don't know how possible it is, but I do wonder if this really inexpensive gift has not contributed to Sam becoming so much more confident with the sitting and standing. Sam does ride the little pushbike quite well, way better than I expected, so perhaps it's possible? Regardless, it is beyond joyful for this Mom to see her little boy cruising around on his bike...just so normal.

We've made it through a very low-key Christmas and even more low-key New Ýear's Celebration, filled mostly with time at home watching movies, splashing around in the pool. In fact, I was so concerned that the rather hectic change in Sam's routine was causing some of the newer gag-triggers that Sam and I did not leave the house for almost seven days, apart from quick trips down to the Spar and the like.  Well that and the fear of having to add a few more destinations to Sam's list of places he has vomited!!!



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