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)

Friday, February 17, 2012

Learning who's boss, a ferocious beast and Frugal Dad

Sometime over last weekend (could perhaps have been Sunday) I was standing outside getting a breathe of air and debating with myself, in desbelief of course, whether it could actually be possible that a new ailment had been added to Sam's surgery recovery and consequential throat infection. Mid-debate I noticed this rainbow and while running inside to grab my camera found my spirits lifting a bit as I was certain it was a sure sign that there was nothing to be anxious about.......

...alas Monday morning's ENT appointment slammed that momentary lapse of reason to the wall! But, oh, the joy (albeit it temporary) of whimsical daydreams....

Despite his tonsillitis and, mostly nighttime, struggles with swallowing and breathing Sam didn't seem in such bad spirits for the most part and has been happy to crawl around and play and not-sleep (you know, the usual stuff). There is an app on his iPad (can't quite remember the name - could be "Zoo-something-or-other) which shows a pic of an animal, says the animal's name and then makes the relevant animal sound. Sam has taken to matching his little plastic animals to whatever animal pic is on the screen. The penquin picture usually has us laughing as the penquin's eyes are yellow and a little scary if you ask me and the penquin sound is quite screechy and startling...and Sam knows this by now, but still insists on flicking repeatedly to the penquin pic, pressing the sound button and then moaning as if he's been unwillingly subjected to it. Comical little smurf...

Comedy aside - the challenge of trying to get Sam's antibiotic in him has become hectically distressing and on more than one occasion driven me close to tears, purely because I know how vital it is for him to complete the course in order to avoid his tonsils having to come out. He had one full dose on Monday and another full dose yesterday morning, if I remember correctly...but that means that out of the required 45mls he needed in total, he's had just over 9mls which I doubt would be anywhere near enough to combat the tonsillitis. In actual fact, I don't just doubt it - I'm pretty darn sure it hasn't been enough purely because I can see what minimum affect the Augmentyn has had on his system, compared to the usual havoc it wreaks. The last time Sam had the Augmentyn we actually stopped it 3½ days into the course because, despite me stopping his Movicol completely and keeping him on Reuteri, the diarrohea just got completely out of control. This time round I haven't even had to reduce his Movicol at all, nevermind stop it completely. So the better part of the Augmentyn has been either vomited out when Sam's starts crying because of having to have it or plain and simply spat out, sometimes after having been kept in Sam's mouth for over half-an-hour. The picture below was taken on Tuesday night when (and this is no exaggeration) Samuel kept the Augmentyn in his mouth for over 45minutes. I decided to try and give it to him while he was in the bath, for two good reasons 1) being to hopefully try and salvage some of the furniture and carpets which is coated with the lovely chalky mixture that is Augmentyn and 2) being that I thought his bathing and playing and then getting dressed, etc might distract him from his stubborn refusal not to swallow (and that has to be all it is, because the stuff doesn't even taste THAT bad...he's definitely had worse). How naive of me to think I can outsmart Mulish Smurf. Sam proceeded to be bathed, dried, dressed and then happily played on the floor...all the while keeping the, now mostly-saliva,mixture in his mouth.

The problem of course was that by Wednesday I couldn't even try and re-administer any of the doses expelled because there just wasn't enough of the antibiotic left. So if it came stayed out! This morning, low-and-behold, smurf swallowed every last drop of what was left of the Augmentyn (which was only just over 3mls) without moaning, resisting or gagging/vomiting once! Just too little, too late. With the un-resisted dose this morning it's as if Sam was just making it exceptionally clear (as if there could possibly have been any disillusion) exactly who is boss....

Random Stuff

I was watching a program yesterday morning about Chow Chow's and the expert leading the discussion advised that Chow Chows are one of the most powerful and formidable breeds of canine and even have the extra teeth to prove it. I am waiting for a re-run of the show so that I can record it and show it to our Max - the same Max who literally wet himself when a 3 month old pupply ran up to him to play one day. The same Max who tries to slink away as much as possible into the ground when we go for a walk in the hope that the neighbourhood dogs might not notice him and, horror of horrors, bark at him.

Our ferocious beast....

Frugal Dad

I was asked some time ago to share a link to Frugal Dad regarding some thought provoking statistics regarding the high percentage of toy sales in the USA. While the larger part of our blog's followers are South African, the information is quite interesting nevertheless and I know I too (when financial circumstances allowed) have fallen prey to the purchasing of unnecessary toys on occasion.

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