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, March 16, 2011

On The Mend

By yesterday morning Sam's rash was, thankfully, almost unnoticeable and completely clear by this morning. This is such a relief as on Sunday afternoon it was still quite an angry rash :

and was definitely causing Sam some discomfort. The one and only downside of the now non-existent rash is that we are now back to the old anti-histamine formula of Zyrtec in the morning (for allergies) and Cipla Actin in the evening (appetite stimulant), neither of which make Sam at all drowsy as opposed to the Aterax he was having to help with the itchiness...and which ensured a solid uninterrupted night's sleep each night. 

Aside from the rash, Sam was feeling a bit better by Sunday afternoon so we decided to go ahead with a quick bite out to eat for Meg's birthday, together with Aunty Cammy and Uncle Damien. The kids, as always, spent most of the time in the playroom and Sam was determined not to be left out.

 Sam "trying out" the trampoline. He laughed hysterically when Meghan and Chrisna were jumping.

 Sam trying out the cap Meghan got as a present from Chrisna!

As you would have noticed by now, Sam's hair is very seldom what one would refer to as "neat". The maximum period we can manage somewhat neat hair is for about the first thirty seconds after his bath so I had to take a few quick pics of our handsome boy to prove that his hair is not always on a mission of its own :

 Sam L.O.V.E.S Kitty, but Kitty is just way too wary of Sam as she's had her tail, ears and fur pulled just one too many times (not to mention the occasional foot up the bum when Sam's tried to walk right over her and just not aimed too great). Still, the desperate desire for affection gets the better of her and she'll eventually and cautiously creep sheepishly up to Sam, only to be rewarded with the inevitable feet-yanked-off-ground-by-tail move.

Other than the above, Sam is slowly recovering from last week's illness with the exception of his eating though which is now back to where we were over a year ago with him managing a maximum of about ten baby-size spoonfuls of food at the moment. There is still a decent amount of gagging going on but nowhere near where we were this time last week. Fortunately his drinking seems to be almost back to "normal" as too is his tummy. We are still having the occasional throwing up when he gets upset about something - which means that too is back to normal :)

Luke is starting exams next week and we are hoping that, taking his test and task results so far into consideration, all will go well. Unfortunately there has been no developments with regards to last Friday's incident when he was robbed of his cellphone however we were fortunate to be privy to some rather amusing behaviour on Sunday afternoon when, just after 1pm I received a call on my cellphone from "Luke"! The gentleman who had stolen the phone had not even bothered to change the sim card and the person intelligent enough to buy the phone had not questioned at all why there was a list of numbers already in the phonebook and even decided to phone and have a chat with the one saved as "Mommy"!. Except when mommy answered, she just put down but then proceeded to phone again...and once again! I am not entirely sure what she actually wanted but found it quite amusing so sent her an sms/text saying "You are operating a stolen cellphone! Return the phone immediately to Warrant Office L*** at G***** Police Station to avoid further action." I hadn't yet at that point contacted the service provider in case, by some slim non-SA practice, the cellphone was actually retrieved but after said caller's antics imagined her phoning me at like 2am only to have me reminding her for the umpteenth time that she was using a stolen cellphone, so went ahead and had the sim and phone blacklisted. So that was our bit of fun for the weekend! Terribly thrilling..LOL.

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