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, April 20, 2012

Let's play pretend...

...we'll pretend that this is the first time I'm going to throw this little "brag"out there, because just about four months ago I bragged about this very same thing and barely a week later it became victim to Murphy ;)

So (as posted before), Sam has become quite insistent on eating whatever we have on our plates, as opposed to his pureed food. Slowly I've been testing (again) what he can tolerate without gagging. Wednesday just happened to be one really good day, sensory speaking, as Sam had a chocolate spread sarmie for lunch, a really small portion of hot dog (including the vienna, which usually always makes him gag) and then finished off with a generous helping of macaroni and cheese for supper - completely unpureed. And without a single gag.

Now that I sit and think about it, Sam's had quite a good week with "small" victories all over the if any victory could ever really be small. Rewinding back to Tuesday's OT session, for the first time despite many attempts, Sam eventually managed to crawl through the little play tunnel on his own and out into the attached tent. Granted, after getting stuck halfway through when the spatial change from tunnel to tent frightened him, we had to encourage him along by placing his iPad in the tent...but it's still a huge achievement for Sam. Wednesday's PT session played out pretty much the same as every PT session with Sam crying unconsoleably through every minute and me leaving through the waiting room amidst several looks of sympathy but somehow, through all the tears, Heidi still managed to work Sam through most of his routine while I knelt, towel in hand, wiping away the tears. And then of course, the following day, came the eating victory...even if it happens to just be a once-in-a-while occasion for now.

Sam had his dentist appointment yesterday morning and then we had a full afternoon ahead of us with Meg's hockey match and then ballet practice. I was a little anxious about how Sam was going to tolerate the afternoon's activities if he needed some work done on his teeth just hours before that, especially as he wasn't going to be able to have much of a sleep before we headed off to the school. The plan was to somehow dance/sing Sam through the dentist consultation hopefully managing to distract him as much as possible, then quickly dance/sing him to sleep for a short nap, then head off to the school to carry out a swift drive-by child-grabbing and then on to Panorama while Meg ate and changed clothes in the car, entertain Sam with iPad for duration of hockey match then as the last whistle blew charge across the field with Sam and iPad under one arm, to grab Meg and kit bag under the arm (which is really quite funny because both Meg AND Sam could fit INTO the kit bag), charge off back to Gene Louw...execute a cautious but again swift drive-by child-dropping and head off home with a huge sigh thanks to Brampies, who was going to collect Meg from ballet for me to spare us another hour of hanging around.  The plan suffered a bit of a blow on Wednesday evening when I injured my ankle while braving peak hour traffic on the busiest highway in town, to save a lost and bewildered puppy caught in between two high-paced, unrelentless streams of cars, almost guaranteeing him a horrible and brutal death!!!  Okay, that might not be entirely true...but it certainly sounds a lot more charming than me misjudging a step because of not being able to see over the laundry basket I was carrying.

Sam's dentist appointment with Dr Lim could not have gone any better...she walked into our home as warm and friendly as if she was a regular house friend, immediately putting us all at ease...and went to sit on the floor next to Sam to speak to him, which of course he adores - Sam loves attention, especially when its from someone who's prepared to come down to his level to communicate with him. So the actual examination took literally a couple of minutes and Sam did cry and felt a bit sorry for himself for a while after but it was all so worthwhile when Dr Lim told us that, despite the chipped tooth and a small cavity on Sam's one canine, his teeth actually look really good. She assured me that the chipped tooth is not causing Sam any sort of pain or discomfort and that the cavity is so tiny that it was not going to give Sam any trouble for a long while, at least until we see her again in a year. Yes, a year - because there's no treatment that needs to be carried when Sam has hit foot surgery in September.

Two other really helpful bits of information which Dr Lim shared was that firstly Sam's gums are terribly swollen and red with his molars still trying to come through (his teeth take so incredibly long to cut) which is more than likely the reason for his restless sleeping at night...and he still has another four to go. And also quite interesting was how bad nighttime mouth-breathing can be for your teeth...and, despite the adenoidectomy, Sam still mostly breaths through his mouth at night. Anyway, the whole visit was an absolute pleasure, confirmed by Sam who held out his hand to Dr Lim and whined when she left.  I highly recommend Dr Lim to any parent of a special needs child...her caring and comforting manner alone is reason enough to seek her consult, only made more valuable by the fact that she is prepared to make house calls in order to further make the experience less traumatic for the child. I have to, again, thank our Aunty Anthea for showing us to her in the first place xxx

The rest of the afternoon went by just as smoothly with the help of some Cataflam and Brampies, who we dragged with us to the hockey match so that I could avoid having to carry Sam around the school at first until we knew where the Genies were playing. Once the match began, Sam sat good as gold on my lap and watched video's of Meg on my phone and even with all the in-and-out of the car and driving, hardly moaned at all. 

This morning I managed to transition Sam from my lap into an, almost, unsupported sitting position on the floor where he stayed for at least about ten minutes playing, with just his arm leaning on my leg as reassurance that I was still there. When he seemed ready to move, he slowly (and maybe a little shakily) pulled himself into a crawling position with just a little help from me. This, so far, is probably the most significant victory for me. The eating thing is a little frustrating but Sam (as with most of his RTS siblings) has never done great with it so when he regresses back to pureed food I still don't feel like we've lost anything. But the total regression from being able to sit and transition for sitting to crawling and back again...that's been really quite difficult to move past. And as Sam goes longer and longer without making some progress back to that milestone (which took him 18 months to master in the first place) I grow more and more worried about how more difficult it's going to be working our way back to that place. So, we pray that this morning's little breakthrough is the little preview of light (or, in Sam's case...iPad) at the end of this particular tunnel.

"Every child is gifted. They just unwrap their packages at different times"  Unknown.

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