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)

Thursday, November 19, 2015

Smurf! Smurf! Wherefore art thou Smurf...

Sam's had quite a busy month and a bit, leaving mom little time for blogging...but thanks to my ever-handy phone camera, creating a timeline of the last few weeks is a delightful breeze.
At the beginning of October Sam was off on a road trip to Stilbaai to visit his Ouma and Oupa and cousins Hendrik and Boeta Dirk. 

After a fun weekend of seaside walks and being kept entertained by all the goings on, one would have expected the 4 hour journey home to be filled with blissful silence? 

It was not. 

It was instead filled with a non-stop,throat-annihilating screeching which proved distressing to the point of tears for at least one of the car's occupants (not Sam). It was not the first screeching episode of the weekend as this seems to be Sam's new chosen method of communication whenever he is unhappy about something but it was by far the most traumatic. 
The following week Sam was ROCKING his new AFO's! And I say "rocking" because one of the main reasons for not doing AFO's sooner was that we were pretty certain we'd be wasting an alarming amount of money on something which Sam would regard with the same amount of distaste as he does shoes and socks. With a completely resistance-free,  8 hour long wear on just the FIRST day we are beyond impressed with how tolerant Sam is being with these "boots of hope"! It has taken him some time to get used to actually walking with them on, which is pretty understandable especially as Sam makes use of his angulated big toe to sort of anchor him to the ground, but both Cornelia (Sam's physiotherapist) and I can already see the difference having a solid base of support has made to Sam's walking. 

With Sam weighing in at a cool 24kg's, which seems to be increasing almost on a daily basis, having him being able to walk independently would be an incredible blessing to both mine and Sam's physical wellbeing :D 

Sam's sleeping is, again, non-existent. And not because he doesn't want to sleep, which is perhaps the most frustrating part. For some unfathomable reason, what seems like a bucket-load of mucous seems to form in his airways at night and he spends hours trying to choke his way through to some actual breathing. It has been going on since the end of September so by now, as I am sure you can imagine, we are ever so slightly sleep-deprived. 

Three Saturdays ago Sam had two seizure episodes. We admitted him the following Thursday really just for observation, but when his ENT saw some fluid in his ears and an indication that Sam's sinuses might be blocked up, it was decided that a 3rd set of grommets and sinus wash would be in order. The surgery was scheduled for the Friday but Sam had an unexpectedly decent night's sleep on the Thursday already. Being "nil per mouth" from 7:30am already and only going into theatre at 2pm, Sam was such a little trooper. He only started asking for something to drink about an hour before he went into theatre. 

The procedure was over in record time and Sam was monitored overnight in ICU. Again, he absolutely blew me away with how well he did with having all those beeping little gadgets attached to him, not to mention tolerating a drip in his hand (!!!) which has always been a HUGE no-no and is usually removed within an hour due to him bashing the bandaged hand to the point that the drip in any case no longer works.
As with most of Sam's ENT procedures, a little snottiness can be expected afterwards, more so this particular time with him having been snotty in any case beforehand. Surprisingly enough though, he had another decent night's sleep the second night...despite trying several times to sleep on his stomach, monitors or not. But his very first night back at home and we were drowning in mucous again and apnoeaing a-plenty. The only explanation it seems is that there is something in or around our home to which Sam is having some sort of respiratory to figure out what. Process of elimination is not working out that great hindered even further by the seasonal change which, this year, seems to have affected many.
Sam and his never-ending worry that the ducks at the local pond are just not being fed enough, just as worried (it seems) as to whether they are all safely where they're meant to be as he attempts to do a headcount of all couple of hundred of them...on just two unique little hands.

Goofing around with his Big Sis xxx 

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