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)

Saturday, January 6, 2018

Conquering ain't for the fainthearted....

...which is why I leave that up to Sam while I stumble clumsily along wondering which year it is! 2018??? I'm still easing myself into 2017!

"Stumbling" could well describe the manner through which we've approached the past few months...if stumbling could be an appropriate way to get through a four-month-long-relentless-battle-with-ear-problems-with-an-ear-polyp-for-extra-pizzazz-and-a-touch-of-precocious-puberty-sprinkled-with-funky-mouth-issues kind of phase?

Let's go alphabetically (hopefully my literacy skills do not fail me as atrociously as my numerical skills) :

Ears - Sam developed a rather nasty ear infection (in his 'good' ear, sadly) in August. The subsequent treatment thereof was not terribly effective and, three months later, resulted in a polyp and a still lingering infection. Said polyp had to be removed urgently right then and there in an ENT's room (without any sedation or even pain meds) as we only found out about the polyp at that time and leaving it untreated for an additional couple of days (it was a Friday) in order to arrange a theatre date, was not an option. Sam was extremely traumatised by the procedure :(

Funky Mouth Issues - Sam has significant dental overcrowding on his right side and as a result, has an adult tooth which has been trying to drop down for about six or seven months but is being blocked by three other teeth. There seems to be no consensus between the medical role players involved on how to deal with this and so Sam now has an adult tooth which is wanting to bulge randomly through the side of his gum and is causing him immense discomfort :(

Precocious Puberty - after Sam sprouted some rather adult looking hair earlier this year, an MRI revealed that Sam's M.I.A. little testis, which we thought had given up its ghost, is quite snuggly tucked away in the inguinal canal and happily testis-ing away. The immediate concern was that of the high risk of tumours with undescended testes, which would explain why Sam's body was in puberty a year or five too soon! Earlier this year??? #eyeroll Earlier last year! The MRI was revisited and it was concluded that (thankfully) this little testis is tumour-free!With there being several possible causes behind Sam having "testosterone levels of an adult male" (as described by the endocrinologist), the next step was to confirm that Sam is indeed in puberty and then to pinpoint the reason. A bone age test confirmed the Precocious Puberty and it was concluded that it is likely a complication of the type of Cerebral Palsy Sam has. So what now? While (for several reasons) it would be preferable to have our M.I.A. testis safely relocated to Casa del Scrotum, the fact that it is sitting extremely high up in the canal and would need to bypass a significant amount of scar tissue (from the previous surgery) poses a great risk of arriving home damaged! With me having already demanded that the other testis be ousted several years ago #me.winning.always. any damage to our last survivor would not be great. So we shall leave him be for now and do aggressive monitoring for tumours while PP wreaks havoc on Sam's system...both physically and emotionally. The physical changes sure are something to get used to...but the aggression levels are just something else! That, combined with all the other issues going on and having to deal with it all without having the luxury of verbalising your discomfort and extreme emotions, has made for one (often) grumpy little guy. I have seriously considered soundproofing at least one room in the house for fear of having the Police and/or Child Welfare show up one day to find out what all the hysterical screaming is about! And it ain't changing soon folks, as we are going to let the puberty run its course for Sam's longterm benefit.

But, as always, despite there having been a few bumps along the road lately...there have been some amazing moments too. Sam has been taking more and more independent steps and has on occasion managed a good five or six metres on his own! You do have to sort of trick him into thinking you're supporting him, but as soon as his confidence starts overpowering his fear, there'll be no stopping him I'm sure. Aaaaaaaand...Sam has discovered the joy of PRESENTS! So much so that I had to hide any unopened gifts this Christmas which were not for him. His birthday this year is going to be an absolute treat. Once all our 'nigglies' have been sorted out, 2017 is going to be a great year!!

Just kidding!

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