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, January 24, 2014

Accessorise! Accessorise!

Move over Louis Vitton and Prada...I have recently acquired the ultimate fashion accessory.
Behold...the DNY all-purpose carry all!
Perfectly designed to catch and store the most ghastly of throw-ups with a large, easy-to-aim opening and readily disposable container. The product of a spontaneous brainstorming after last Friday's art class, when Sam spewed his entire stomach's contents all over the inside of the car, at the sighting of unfamiliar territory...before I'd even managed to get him out the car. 
This was the before picture...I thought it best not to capture the after picture LOL!

Several times over the days leading up to Sam's very first art class, I let him watch a video of children painting pictures, as well as on the Friday morning hoping to prepare him in a way for the morning's planned activities. I knew Sam would not hold a paintbrush, so opted instead for finger paints especially as he seems quite keen lately to try different textures on his hand, even textures which previously freaked him out, like bubble bath.  But of course before getting down to any painting there was the matter of transitioning him from familiar hence safe (car) to unfamiliar hence threat (never before visited home). Transitioning is definitely an issue with Sam at the's that vulnerable space between the safe, solid chair to the safe, solid floor.
My first reaction was to surrender and head our vomit-covered smurf home. But after encouragement from the wonderfully supportive other moms, decided to stay and although Sam refused any kind of painting and moaned occasionally, we spent a good hour just enjoying the other children proudly tackling their activities. 
Already caught up in a particularly challenging wave of anxiety, the severe lack of sleep happening in Smurfville is most certainly not helping at all. From Friday evening till Tuesday, Sam's sleep deteriorated from being awake roughly between 12am and 4am to less than two hours sleep on Monday evening. Sam woke just after 10pm and that was it, he bashed himself senseless and to the point of acquiring a few bruises, until just before 6am at which point it was easier to just admit defeat and get up. I was convinced there had to be something bothering him so went off to the doc but Sam received a clean bill of health. Sam's been having some urinating issues again and over the past few days going anything between 12 to 16 hours without a wet nappy has become the norm, despite drinking at least 1litre of fluid every day so I was looking forward to mentioning this at our neuro appointment on Wednesday, but quite distressingly the appointment was cancelled due to some sort of miscommunication regarding Sam's neurosurgeon's availability. We did do a urine test on Tuesday to rule out a UTI, which it did.
Another issue I wanted to raise at Wednesday's appointment was the possibility of Myoclonic Seizures. Quite some time ago I complained that Samuel's body twitches and jerks all through the night...his legs, his arms, his hands almost constantly and even his head. So much so that it lifts off the pillow sometimes.  Somewhere along the line I recall the term Myoclonic Seizures being mentioned on one of the SPD support sites. I paid little attention, reassuring myself that even though Sam's only had 5 seizures in his lifetime I would most certainly recognise it if it happened again. Then over Christmas Sam had that lovely little virus visiting his tummy and I awoke one night to him having a very short, but definite, convulsion. The first two convulsions he ever had were febrile convulsions caused by the onset of a nasty tummy bug, almost three years ago to that day. I kept a close eye on Sam for the next few days and decided to go read up on Myoclonic Seizures after all, just in case, only to discover that they are in fact not "seizures" as such, as I  had presumed, but rather a series of spontaneous jerking, etc. An extra bonus was that there are a few video's on Youtube actually showing what it looks like and it pretty much looks exactly like what Sam's little body is doing through the night, which would sort of explain why peaceful sleep escapes him. 
So, again, really disappointed that Wednesday's appointment didn't take place :(
Finally, Wednesday evening saw us enjoying at least a little sleep. Not a full night's, but there was more sleep than wakefulness...which becomes quite good enough. Thursday morning was Sam's first group outing -  to the Fire Department! Really exciting, particularly for me, as Sam loves doing the "fire engine" sign. Thankfully we avoided vomit for at least the first half hour, although Sam preferred observing the fire engine and the other children from a distance. When the firemen turned the water on, that distance entailed Sam and I having to leave the actual fire station and watching from outside the front of the fire station, through the great big doors. There might have been vomit, but it was just a little...not even enough for me to have to reach for my DNY but easily cleaned up with a wet wipe. That little bit of vomit though was quite a blessing as when rushing to the car to retrieve the wet wipe, I discovered I had left my car door open the entire time. GASP! These kind of are becoming a bit too frequent. There has been the occasional bottle or phone left on the roof of the car and en route to the Fire Station on Friday I suddenly found myself at the local high school, not too far off my intended destination (barely a kilometre or five) but still just a tad worrying. Surviving on 1-2 hours sleep a night, I would have imagined far more perilous consequences so we're still good for now. And boy is that a good thing, because last night we did another whopping amount of bodybashing from, again, round 10pm till just before 5am. Thankfully Sam fell asleep then for just over three hours, giving us just enough time to make it to physio which lasted all of 20 minutes as Heidi was unable to work with the fearful and fight-or-flighting little dude :(

Where Sam is at his most happiest home, close to the floor, on a soft surface...with an adorable little boy for company

Sam and his "bike" providing us huge amounts of amusement because try what you might, he refuses to sit straight on the seat. As soon as you correct his position, he shifts that little bottom to the left and refuses to ride any other way.

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