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, May 20, 2011

Aaaannnndddd....a few steps forward again :)

Remember me whinging roughly about fourteen months ago about our pc crashing and losing not only most of the pics we’d taken over the last four years, but also all my emails and email addy’s due to a teeny weeny oversight on my hubby’s part? Well, if you don’t remember, I certainly do. So you can imagine my horror when, on Tuesday morning, I put on the fourteen-month-old pc we’d subsequently purchased only to see it get caught up in the same restart loop the previous one went through when it crashed! Oh my fragile heart! Meghan and I mourned the loss of our respective Sim-families we were sure we’d lose through the pc’s breakdown. On Wednesday was a national voting day here in SA, so after going and making our mark (or marks to be exact) we quickly drove by the computer place and, luckily, it turns out it was just the pc’s power supply which died. I say luckily, but it cost a pretty penny to have the power supply replaced and I am so hoping that this one manages to exist longer than fourteen months.

On the subject of voting, our little Conqueror Smurf has started becoming extremely strong-willed and often tests our boundaries with regards to who’s actually in control…and of course it’s him. At the voting station on Wed, he refused to offer up my ID document for scanning in order for me to vote, so we had to perform acrobatics to have the lady scan my ID without Sam letting go. At the shops a couple of days ago I bought him a packet of marshmallows to entertain himself with while I quickly gathered my purchases together and again he refused to release the packet of sweets for the cashier to ring up and when I eventually wrestled them out of his hand, he started screaming blue murder. He is extremely adamant about what he wants and, non-verbal or not, makes his feelings inexplicably known. We take the bad along with some good though because, even though it makes handling him in public places, in particular, pretty challenging, the fact that he so clearly expresses what he wants using only hand-gestures and singing/grunting/Sam-glish with the occasional tantrum thrown in when additional emphasis is required, is fairly encouraging…in a stressful, zany kinda way.

Other than his unique way of communicating, Sam seems to be daily acquiring new skills again, in addition to having regained his sitting ability. He is still displaying quite severe bouts of startling when I first put him down on the floor to, for instance, play…but the attraction of whatever toy is lying nearby soon overpowers his feeling threatened and we’ve had no additional bumps on the head since my last post about this. He loves…as in ADORES…books and every mealtime, at the least, is an opportunity to go through a few books and look at pictures, point items out, clearly say words, etc. Of course, these books all involve animals mostly, or children at the very least…two things which he eagerly interacts with. So for a few days I concentrated on one particular thing, ie. Pointing out the dogs’ eye in his Dog Peek-a-boo book, and every day I would try and ask him to show mommy the dog’s eyes and by last week he was able to point out the dogs’ eyes. So we remained on that newly learnt skill for a few days and then I asked him if he could point out Mommy’s eyes…which to our delight he did…and then had him point out Barney’s eyes, Daddy’s eyes, etc so that he definitely understand the concept of “eyes” now and also understands that they are something not only unique to dogs  We are now concentrating on “nose” and for the first time this morning he clearly pointed out my nose. He recognizes several items in his Baby’s First Word Book and when you ask him to, can point them out, for eg. Baby, dog, cat, cow. Sometimes he has such an amazing awareness of what is going on around him that it temporarily stuns me because firstly, he sometimes seems more “present” than what Luke and Meg were at his age and secondly, because it is just so unexpected. He has such an incredible understanding of what he is doing like when he is going to do something “naughty” like throw whatever’s lying on the bed onto the floor, he’ll choose an item, look straight into your eyes, shake his head, throw the item and then look at you and laugh that mischievous, shoulder-hugging giggle. Chris and I were sitting with him on the bed this evening, after a multi-handed struggle to dress him after his bath, which bath also ended in wailing protest, while he amused himself with throwing all of our things “overboard” and, with loving tears in our eyes said that, we could not imagine our lives without him. Even though there are so many rough and challenging moments, his remarkable little personality just kinda makes it all worthwhile. Even after that, while I tried unsuccessfully to walk him to sleep for half an hour while he physically fought me to avoid his dreaded slumber, he eventually caved in and moments before falling asleep blessed me with some “ooohhhiinggg” and “aaahhhiiingggg” and a little giggle and then promptly fell fast asleep. Well, at least I think it was aimed at me because by that time his 10.6kg body is dangling at an unimaginable angle from my arms, at great detriment to my poor back, while he strains to keep sight of the ceiling fan…so his pre-slumber serenade could well have been meant for the fan. Nope, we’re being positive right now, so conclude that it was meant for me.

On the health-front, as mentioned previously, we’ve all been battling to fight off the flu or whatever other respiratory ailment has been trying to infiltrate our systems. At this present moment, both Luke, Chris’s and Meghan’s systems have caved, particularly Meghan’s, who has spent the last two nights coughing her way through the most of it. I was convinced that Samuel was well on his way down this path as for the past couple of weeks his OSA is back in full force and effect and he seems quite severely congested at night. Chris, for far more serious reasons, had a doctor’s appointment this morning so I took Sam with and asked him to check Sam out, convinced that he was going to confirm some tonsillitis or a viral infection at the very least, but surprisingly he reported that all Sam’s usually compromised areas (lungs, throat, nose, etc) all look good. So the only conclusion we could come up with is the same reason for the last particularly severe bout of OSA, being the reflux, with the now thinner consistency milk causing excess mucous as he refluxes during the night. Sam’s reflux is still pretty severe and at least twice a day you will hear him refluxing – it makes quite a distinct, inwardly-hiccupping kinda sound…just thankfully without the v-wording for now. He also has actual hiccups countless times during the day so it appears that, although many of Sam’s RTS brothers and sisters outgrow their reflux by the age of one or two, Sam is not going to follow this trend. He has been extremely adventurous lately though with trying out differently textured foods and has, over the past couple of days, eaten some pork sausage (not pureed, obviously), toast, digestive biscuit, skinned orange, French fry/chip and some Milo cereal (although I left this soaking in the milk for quite some time to make the cereal pretty soggy).

The main reason why Sam piggy-backed on Chris’s appointment at the doctor"s was that Chris has been experiencing some pretty distressing chest pains over the past few weeks, which pains worsened to a pretty scary level yesterday afternoon when, while taking Sam for a walk, he and Meg decided to have an impromptu race. The doc had Chris do some cycling for him so that he could monitor his heart rate, etc and after noticing an unusual pattern has referred Chris to a cardiologist with whom we could only get an appointment on Monday. So we wait anxiously for Monday’s appointment and pray that whatever is causing the problem, is not too serious (although are any heart problems “not too serious”?)

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