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 8, 2011

Good Ol' Smurf Mentality

So, thankfully, it appears as though Sam’s blog is not somehow jinxing his health. Phew! What a relief that is. (Of course I was being serious when I said that last week…LOL). With only an extremely minor throw up on Saturday, we were all good to go for Sunday’s trip. Or so we thought. No, nothing ailed us from Sam’s side however, our usual three hour & forty-five mins trip was turned into a five hour long trip, both ways. We left at about midday on Sunday afternoon thinking that the roads would be relatively quiet as all the holiday goers would surely have left on the Friday after school and not many people choose to travel on a Sunday afternoon. Our intentions probably would have paid off except for the major roadworks taking place along the way which resulted in over an hour’s delay. Sam was beside himself and got to the point where he just couldn’t take it anymore and started biting me in the face and pulling my hair from frustration. (This has become quite a habit of his when dealing with any kind of “overload” in a situation.)

Effectively, out of the forty-eight hours we were “gone”, we spent ten hours travelling and, say, sixteen hours sleeping which left us with a measly twenty-two hours actual visiting time. Not one of our most intelligent escapades ever if you look at it from that point of view, but at least we did get some quality time in with Chris’ family and, as always, Meg and Chrisna played up a storm.

Sam only had one v-word episode while we were away and that was on Sunday night, mostly due to still being stressed about the long car trip which found us arriving just about his supper time which then, of course, sent his normal evening routine hurtling to the wind and left him completely unsettled, on top of not having much time to get used to his new surroundings before bedtime. But for once it was Chris who got v-worded on which was a small, yet much appreciated, consolation…well for me anyway.

Sam had his second OT session yesterday morning which couldn’t have come soon enough as his biting has become so out of control that he actually had me in tears on Tuesday afternoon. At first I thought it was just his version of a kiss, because he seemed to do it in an almost affectionate manner but, as his OT confirmed this morning, it is definitely related to the SID as it happens predominantly when he is in some form of sensory overload, whether it be negative or even positive, like when he laughs so much that he actually starts crying. Anyway, the session went extremely well with very little resistance from Sam. He loved all the various types of swinging and even tolerated the new types of brushing and deep pressure input. Sam was helpful enough to go into one of his biting “fits” right there in front of the OT, ripping out a large handful of my hair together with the biting, which enabled her to see exactly what I was referring to. She gave me a fairly thick piece of tubing to try and keep on me as often as possible so that when it looks like Sam’s about to bite, I can quickly place it in his mouth and get him to seek his sensory input through the tubing rather. We are still carrying on with the sensory brushing which Sam still tolerates quite well most of the time, but it’s the deep pressure exercises afterwards he resists so aggressively. I was actually pretty much convinced that I’ve been doing the deep pressure input incorrectly because Sam literally fights me on it, but when OT went through the exercise this morning he tried to fight her off as well, which did put my mind at ease….well, a little at least!

Sam’s crawling is coming along beautifully, especially over the past couple of days. Dare I say he might be crawling properly by his 2nd birthday (in just over a month’s time)? He has even ventured out onto the normal floors now, as opposed to only managing to crawl on the bed or a duvet laid out on the floor. It is sort of weird to be looking forward to crawling by the second birthday whereas usually you’re entertaining the idea of your child possibly WALKING by their FIRST birthday. I really appreciate the tact and compassion with which Sam’s OT has handled this particular subject as, when doing his assessment and coming to the developmental section, she did not feel it necessary for us to have to pinpoint exactly to what extent he is delayed. Along with the forms which she handed me to complete was the development assessment page (I didn't have to fill this in either - thank goodness) but from the information on there it would appear that Sam is only on the developmental level of a seven/eight month old baby…perhaps a nine month old at best. While I have no delusional perception about Sam’s development, somehow hearing a “professional” person spell it out for you just seems to sharpen the reality, so I am grateful for her sensitivity.

We are still doing the no-Nestargel formula but I am not sure for how long this can stay a solution as there is still definitely a degree of reflux going on, which is especially obvious at night with the OSA and stuffy/congested nose again. Wow, one just cannot seem to win! Because of Sam’s inability to co-ordinate both hands for such a long time, he was never able to hold his bottle himself, which was not necessarily a bad thing as we had to use teats which were designed for thicker liquids and which had three different flows on them, of which Sam used the smallest due to his swallowing problems. Had he actually learnt to hold his bottle himself, just one slight twist of his hand would have had him sucking on the widest flow so I was quite happy to be holding the bottle for him. Now that he is drinking normal consistency formula there is no reason why he cannot hold his bottle himself…well, other than the fact that he refuses!!! Chris tried to get him to hold it last night and although he kept his hands on the bottle while Chris in turn held Sam’s hands in place, the moment Chris removed his own hands Sam just let the bottle drop. Of course there’s no way we can blame poor little Smurf…having someone else cradle him and hold his bottle for him is how he’s been doing it for the last twenty-three months and he obviously just doesn’t see any good reason to change that….can’t say I disagree with that ol’ Smurf mentality.

P.S. This is my first official blog from my new Acer Notebook so that in future, regardless of whether we are away for a few days or Sam is in hospital or whatever, there won't be such long gaps between posts. Thanks Love - Love you xox


  1. Hoping that this post is the start of a more positive season of health for Smurf. Exciting news about the crawling - you go Sam.

  2. I'm so glad you have an OT helping...I know what a difference it makes to have an encouraging professional who understands your child and understands your needs as well. Yeah Sam!