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, October 30, 2016

An abundance of FIRSTS!

Sam's very first school term (semester) has come and gone..hard to believe that it's been more than three months since I sent Sam's tutor dismal messages about not being able to find the 'right' carer for Sam, which would prevent him from starting the term with every one else just five days later.  Yet here we are several classwork activities, one progress report and a very-first parent/teacher meeting later. I still find myself occasionally bordering on disbelief at the unexpectedly painless transition from homeschooled to classroom for Sam...if I've said it once, I've said it a million times...this is just not how I expected things to go. But, have no doubt, there are no complaints about avoiding the resistance I anticipated.

It was incredibly emotional opening Sam's bag up at the end of the term to his report and classwork books, sent home for review.  Sam thoroughly enjoyed going through his school books with me and pointing out the activities which were obvious favourites :

As was expected I guess, Sam's immune system did take a bit of a knock and we had a bit more of a troublesome Winter this time round (bar our fab run in with Rotovirus last year).  Thankfully we've stuck mainly to URTI's and a coupla bouts of croup (although pretty resistant bouts) which is hardly anything to really complain about.  

There have been some other unrelated 'bumps' as far as health goes...a few petit mal seizures (which were accompanied by an uncharacteristically sleepy Sam), the hallux varus in Sam's left foot seems to be worsening at an alarming rate and, just to make sure we're covering as many areas as possible, Sam has two fabulous talon cusps sprouting in that already-funky little jaw of his.

The petit mal seizures seemed to have righted themselves and the.most.painless.blood tests.EVER confirmed that Sam's Epilum levels are spot on. And yes, I can say that Sam having his blood drawn was painless on his behalf because we went into the pathologists late one evening (which should only have made the process more traumatic with Sam not liking his evening routine disrupted), wrapped Sam up tight in a blanket to help get a grip on his (usually) pretty powerful struggling and mentally prepared ourselves for the auditory onslaught which would undoubtedly be assaulting our ears.  And yet, although the lil flappy dude was shaking with fear, the needle went in with ease (after a few iffy attempts at locating a vein which is almost always impossible and something we seldom do without anaesthesia) and almost instantly the blood flowed into the tube. And that was that...not a peep, not a tear.  The sleepiness largely seems to have righted itself as well, with the exception of one or two random incidents last week.  Sam's iron levels came back a little high (just over double what they should be) which was a little unexpected for a kid whose diet consists mainly of gluten-free pasta and he seems to be struggling to regulate his body temperature more than ever before, particularly at night and in the mornings despite usually having on a least one extra layer of clothing than what everyone else has. We eagerly await the new 'medical' year so that we can run a few tests to make sure that there is nothing ominous going on with Sam's pituitary gland.

With 'firsts' being the order of the day...month for that matter...there have been a few more surprises. After struggling to get Sam to tolerate any other liquid other than warm Pediasure, Sam now manages about 100ml of juice from a squeeze bottle when at school! (And, yes, he of course refuses it at home).  About a week ago while sitting on the couch reading with him one afternoon, Sam asked me to put his specs on. Sam ASKED to have his specs on!! The very same specs which over the last 7/8 months get flung violently across the room the second they come within arm's reach. So last week I sent the specs to school with Sam's carer, Leeanne, and asked her to just try and put them on for short periods of Friday not only had Sam asked for them again, but had kept them on practically the whole day.  While I am a little worried that Sam's eyesight possibly deteriorating may be the cause of his sudden eagerness to wear the specs, on a positive note (other than the obvious YAY for wearing them) it makes me think that Sam is so keen to soak up as much as what he can from his activities at school that he's prepared to do the necessary in order to learn more, which in turn means that he was able to quite effectively REASON through the situation. Not too shabby for an ineducable lil flappy dude hey? 

Amongst an overwhelming number of things to be thankful for during this unexpected, yet very welcome, twist to Sam's journey comes one 'tiny' regression and that being that Sam has effectively decided that life from here on forward shall consist solely of home and school!  There shall be zero tolerance for any deviation from the, now, extremely limited scope of accepted social activities. There was a short, one-week school break a few weeks ago and already on the Saturday after school closed (on the Friday) Sam was signing "school". By the Thursday I was about ready to go deposit him outside the school gate in anticipation of the Monday's return to 'normal'.  The fact that we live 3 minutes away and drive passed the school regularly, does not help at all...LOL! So yeah, the lil flappy dude is not currently in the running for social butterfly of the year but it's an extremely small price to pay for the peace of mind that comes with knowing that he's exactly where he's meant to be.

One of Sam's Spring class activities

And a fabulous looking snowman indeed

Another 'first'...yes, that's shaving cream!

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