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, February 27, 2013

Walking, horses and toe-padding


Sam has his walker *does really goofy-looking smurfy-dance *  (Mom, not Sam) Whoop Whoop!
And he is loving it. So much so that I took this awesome LITTLE video of him taking a stroll down the road with it. But after the video still not having uploaded after almost an hour, I had to conclude that the darn thing was not THAT little after all. Eish. Will try again. Sorry Lynn ;)
At least we have a pic.  We have adjusted the height of the walker somewhat which makes for a much more comfortable gait and way more confidence. At the moment, the wheels can only go straight, which we thought might be a good idea at first so as to avoid Sam having some rather damaging (to both himself and the household contents) bumper car episodes. But alas, the little dude is becoming very frustrated at not being able to go exactly where he wants to and so tries to lift the walker and shift it himself, which works okay some of the time but more often than not results in him overbalancing.  The great thing about the walker is that it has these little reverse brakes on the wheels so the wheels actually cannot roll backwards at all which means when Sam does lose his balance he simply grabs onto the walker and steadies himself quite well.  I was considering taking the walker with to our physio session this morning, just to show Heidi and have her confirm that the height and everything else was as it should be. However, we ran out of time (largely due to Sam's new morning ritual - more about that later) so I decided having to first negotiate fitting the walker into the car would just make us even more late. From next week though I will make sure we have enough time to pack the walker in as when walking with the physio's trolley, Sam lost his balance, immediately grabbed the trolley to regain it and instead landed up toppling backwards as well as pulling the trolley over his little feet in the process. 
Overall, having the walker is such a blessing. It is going to be so beneficial to Sam.  I really can't believe I had developed such a mental aversion to it. And it's an extra blessing that, Sam being Sam, he has become so comfortable with it so quickly, as opposed to shoving it into one of his sensory no-no's along with sitting, holding his own bottle, lying on the floor, hairdryers, vacuums, balloons, etc. . I will most definitely take another video ASAP...just perhaps a little shorter...and post it :)
Sam and Meg had another riding session on Saturday morning. This time Sam rode with Elbie. Oh, he is LUVIN' all the attention from the girls, little charmer. And the colour-coded hats was purely coincidental by the way.  The weather played along beautifully, pleasantly warm with loads of clouds to avoid having to stress about sun exposure.  Yet again, Sam adored his time at Haven of Hope. And, an unexpected advantage, having to run alongside the horses to keep up is providing mom and dad with some much needed exercise. 
Yet another love affair developing...while Aunty Cheryl kept checking in to make sure her baby was doing okay. What an amazing group of ladies at Haven of Hope. Love you guys xxx
Meg feeling a lot more comfortable on Knight and even managed a little independent riding towards the end of the morning.
So, Sam's new morning ritual?  As you all know by now, Sam's still-not-resolved sleeping issues usually result in me putting him in our bed (Ja Ja! Co-sleeping is bad) to a)avoid him shattering the bones in his hands and arms with the sheer force by which he slams them into the side of his cot and b) in a feeble attempt to try and get something remotely resembling sleep myself. Which means that every morning Sam wakes up in our bed and insists on being delicately transitioned into the new day with some cuddles and then some i-padding before having to get up and face the big bad world.  And, even more entertaining is that he's taking to i-padding with his toes.  Because being somewhat "different" is not enough...he HAS to go the whole hog. 

Back to *BLESSINGS* (Okay. So the "flow" of my posts needs a little work lately. Hehe)

Both Sam's physiotherapy costs for the entire year and the cost of the walker have been gifted to Samuel by members of our families.  As you can imagine both these costs are substantial.  There are no words which can adequately express our gratitude and appreciation  (you know who you are xxx). The best we can offer is a heartfelt and emotional THANK YOU at lifting such a heavy burden from our shoulders. Does the Lord not work in truly wonderful ways? xxx

Thursday, February 21, 2013

Sammy Singing a Lovely Song

Sam has being making a new sort of sound. Although I know that any form of verbalising is in no way an indication of whether Sam will speak one day...his "talking" is still terribly amusing and oh-so cute.

We FINALLY made it out to Haven Of Hope Equine Aid Centre this last Saturday.  We have not been there in forever. Sam had such a good time, he even started falling asleep mid-ride.  And never a wasted opportunity for therapy, at one point Thembi's stride slowed down a little but Sam's little body kept on with the "rocking" motion which is apparently really beneficial for his walking and gait development. 

Sam and Aunty Cheryl on Thembi, completely relaxed and enjoying having a far less anxious support behind him, than his Mom ;)

Meg on Knight for the first time...rather chaffed with herself that she's riding the beautiful creature she once saw as being terribly intimidating

Aunty Marili and Sam's friend Antoni xxx

Neil and Elbie, part of HOH's support, doing an awesome job leading Thembi and Jabu for our boys

Talking about walking and Sam went to test-drive the walker Solutions had sourced for him. And it was a perfect fit.  Sam took to the walker immediately, doing a couple of laps around the shop amidst cheering from us, the Solutions' staff and even a few contractors attending to some renovations on the premises.  The walker has been undergoing some "pimping" to make it even more comfortable for Sam and is now ready for collection.  We can unfortunately only fetch it tomorrow this space for pics :)

Sleeping : Sam had seven absolutely awful nights...throwing himself violently into the sides of his cot for hours-upon-hours.  He had a nasty fall on Wednesday morning (last week), slamming his chin and chest into the tiled floor at home. Since then he repeatedly signs "sore" but his complete comprehension of the "sore" sign is a little troubling lately. Sam signs "sore" for pretty much everything now...everything which possibly makes him sad or having to go sleep, not wanting to eat, etc. Anyway, I have worried that perhaps there is an underlying injury from the fall which is bothering him, although he still drinks his bottle and does chew. He just seems to be constantly fiddling his mouth, quite often flinching or in obvious discomfort.  When we saw the dentist at the end of last year, she did point out that Sam still had a few molars to grow this could also be the problem.  He's also battling with a bit of a nasal drip and blocked nose at night which could be causing a bit of a sore throat. Urrrggghhhhhhhh! So tired of guesswork.
But...and it's a BIG OL' BUT....last night Sam went down at about 8:30pm, did not rock/throw/bodyslam himself once during the night and only woke up this morning when I physically had to wake him just before 7am so we could make it to OT on time. usual, I cannot pinpoint any physical thing I did remarkably different, except for this one thing.  Usually when I pray at night, I start with my "thank you"'s and then move on to my petitions. However I have to reluctantly confess that more often than not, I fall asleep before I've even made it through half of my petitions.  (Embarrassing but true <BLUSH BLUSH). Last night, after experiencing some really scary sleep-deprivation behaviour during the course of the day (especially when driving from physio yesterday morning and finding myself repeatedly drawn to the righthand curb the whole journey) I excused my self-absorption to the Lord and could only manage a pitiful "Dear Lord, please let us have just one night's good sleep...for both mine and Sam's sake".

Need I say more? 


Thursday, February 14, 2013


...of my emotions about tomorrow. 

Over the last few weeks I've been on a mission to find Sam a walker.  What an incredibly frustrating one.  Particularly when you realise that some companies are quite at peace with taking advantage of your near-desperate quest to benefit their own financial gain.  The last quote we had was an amount of R34,500.  I could only laugh....what do you even say to that?  Sure! What the heck, I'll take seven...a different colour for each day of the week. Eish!

Last Thursday Brampies took a picture of the walker we've been looking at to a company he remembered manufacturing medical equipment. This company in turn referred him to another company, quite close to home. Sam and I then went in on Friday morning (on the way back from his opthalmology appointment - which got a thumbs-up) and found the staff wonderfully helpful.  They assured us they would do their best to try and find, at the very least, something similar to the Trekker or even modify one of their current walkers (mostly for adults) to accommodate Sam.  I just received a call from Maryna from Medical Solutions to say they've managed to bring a walker down to Cape Town which they think would be suitable for Sam...and asked if we'll come in to "fit" it tomorrow.

Every time I picture Sam in a walker, I get butterflies in my stomach...which butterflies seem to have an invisible string attached to my tear ducts which then go into super-overflow. I know I've blogged about this before and for a good reason - I just can't seem to move past it.  Who knows why? I have such an emotional block about this silly walker. I know Sam NEEDS to be more mobile - for all sorts of reasons : development, independence, medical (those little knees)...even physically, so that those little calf muscles can work on becoming as solid and muscular as his awesome little thighs (or "hams" as Chris calls them).  So - common sense (what little I have) sends a message to my brain saying "WALKER = GOOD THING". And then...right outa heart butts in, slamdunks a "WALKER =  HEARTSORE"...knocking my common sense message right outa play.  

So it's going to be a really interesting shopping trip tomorrow ;)

Praise The Lord - There's always something good to share though, isn't there? Sam has had his Buzz Lightyear ride-on since he was about 18months old.  Since his sensory/anxiety issues went South almost 2 years ago, he seldom sits on it and when he does, he is doubled over in pure fear. The same goes for the little rocking horse you can see in the photo background.  On Tuesday morning he was kneeling on the floor playing with the horse and asked to sit on it.  For the first few minutes, I held him around his trunk as I usually do, while rocking Sam, the horse and myself.  Excruciating cramps in my calf muscles eventually meant I had to stand up for a short while to relieve the pain...and would you know, the little dude was quite calm.  I then sat on the floor next to him for a while and it was a good few minutes before he asked to come off.  I waited a while and then thought I'd try the Buzz Lightyear car.  "Joy!" screamed my heart... AND my aching back. Again Sam was quite calm and happy to sit unsupported. Progress is progress, no matter how small or "every day" it might seem to some. 

So adore this little boy - my heart wants to explode with love when I look at him xxx

And too for my little Mommy 2IC (posing with her Academic Merit Award and Badge she received for her 2012 final grades).  Chris and I ventured out for a (very) short while last night in I-honestly-don't-know how long.  Sam was apparently relatively okay until he spotted a video of me on his iPad, then became quite distressed and started crying. Meg picked him up and walked around the house with him singing Twinkle Twinkle Little Star until he was feeling better. She also helped Brampies change his nappy. 
She's such a good girl and Sam knows it too - he rocked himself to sleep earlier, clutching a photo of her to his chest.