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)

Wednesday, June 1, 2011

Third time lucky!

After Sam's croup diagnosis last Thursday and with a little help from some of the prescribed treatments, Sam's symptoms seemed to ease off a tiny bit...with "tiny" being an understatement. I am not sure about Sam, but I am pretty much experiencing a decent dose of cabin fever having being basically restricted to the house with Sam being so sick, with the exception of the occasional trip to fetch Meg from school (although Brampies has pretty much taken on both Meg's and Luke's to-ing and fro-ing to school/college for now) and our doctors' appointments. Thankfully Meg's hockey tournament was cancelled on Saturday (Did I say "thankfully"? At least it would have meant some contact with the outside world) but we unfortunately also missed out on Rian Smurf's birthday party on Sunday, as well as having to subject Ouma and Oupa to a pretty dismal visit consisting of few outings and a house full of patients.

Yesterday was Chris' birthday and how did we celebrate? With a trip to the paediatrician after yet another difficult night with Sam, which ended with him waking before 5am screaming in pain. The remainder of the day was spent with endless v-word cleanups thanks to Sam seeming completely incapable of keeping any food or liquid in his stomach, including his meds! Aaaarrrgggghhhhh!

The upside (and yes, surprisingly enough, there was one) was the paediatrician's appointment. For more than two weeks now (and two GP visits) I have insisted that there was something more serious going on with Sam, other than a cold and even the croup. But there has been a slightly confusing piece to the puzzle which has managed to throw the other docs off - being that not once during this period did Sam have a fever. Admittedly this is rather strange seeing that Sam's core body temp is fairly high and always, without fail, the first sign of serious infection is that he gets a fever...sometimes as early on as two weeks before the onset of any other symptoms. Only once over the past two weeks has his temp even managed to reach over 37ºc (with his "norm" being about 37.2ºc) and that was yesterday morning, otherwise it's been hovering between 35.5ºc and 36.6ºc, believe it or not.

Now, I am pretty sure that Sam has in fact been suffering with some cabin fever himself, because he LOVED having to hang around in the waiting room at Dr S's office and was as bubbly and joyful as always...pretty remarkable when we found out what's been bugging him. When looking into Sam's ears Dr S started saying things like "Ouch" and "Shame" which we figured either meant Dr S's little light examining-thingy was causing him some sort of pain...or he was reacting in sympathy to what he saw. It turned out to be the latter. He said on a scale of 1-10 with 10 being a burst eardrum, Sam's left ear was an 8 and Sam's right ear a 9.5!!! A-ha! F.I.N.A.L.L.Y! By yesterday morning I was really starting to feel quite despondent and hopelessly frustrated because I could see that there was something serious ailing Sam but after two pretty "wasted" doc appointments, wondered if maybe I was really becoming as unnecessarily pedantic as what, I am certain, some people have started believing I am.

Unfortunatley, the high of finally knowing what was wrong wore of soon enough after two failed attempts of trying to get the antibiotic (non-penicillen for now, until we've confirmed Sam's allergy) and celestamine to stay in Sam's tummy, not to mention anything remotely similar to food or liquid. No matter how little we administered at a time, regardless of any amount of dancing and singing to try and distract him from the urge to throw up....everything came spewing out anyway. Eventually though just after 7pm we managed to get half a dose of both the antibiotic and celestamine in, which might have been due to an effectively administered pain suppository by Pappa Smurf which had Sam back to his babbly, joyful self. Sam even managed to take in a little Cera-lyte before bed and for the first time in more than two weeks had the closest thing vaguely resembling a decent night's sleep.

Some random pics taken sometime over the last couple of weeks.....

Sam is never as happy and content as when there is some sort of chocolate treat melting in his mouth! Of course, with his being ill we've had to avoid the chocolate for now but I can almost hear him giggling in delight when next he is allowed to indulge!


Aunty Diane and her Sunday school class made this crown for Sam a couple of weeks ago! It just so happened to perfectly match his little top!


About a year ago, at the very least, we found a dvd at a local factory toy shop called Brainy Baby. Now, from an adult's perspective, the dvd is pretty amateurish (hope I can't get into trouble by saying that) but, with all of the little games/songs/counting, etc being carried out by children (mostly between the ages of 1 and 4) Samuel adores....as in A.D.O.R.E.S the dvd and watches it at least three or four times EVERY day! Sometimes non-stop! He waves when the children wave (the pic above), smiles when they smile, does a little squirmey-jiggy type thing when the dizzy bird puppets dance and grabs my hand to either sign the alphabet next to the screen when it comes on or quickly display his foam set of numbers next to the screen when the counting comes on!


 
Relaxing on Pappa Smurf while watching!


Completely and totally mesmerised!
The best R29.00 we ever spent!!!!

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