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)

Thursday, June 20, 2013

"Let's start at the very beginning,
 A very good place to start.
 When we read we begin with A-B-C,
 When we blog we begin with X-Y-Z"
Why? For the sake of anyone reading this post of course.
I know it has been way long since I last posted so the chances are if I try crank up the ol' memory to record everything that has happend, in the correct chronological sequence, over the last couple of months I am a) going to provide an overlap of what I blogged about last and b) going to get myself all muddled up. This way, if I start with the more recent and work my way back...once you notice an overlap you can just stop reading :) A little bit of much ado about nothing, I fear.
The past few days with Sam have been all over the place, although mostly up the wall where behaviour is concerned...agitated, defensive and bringing a whole new level to being highly-strung. It is not unusual for Sam to go through these kind of post-surgery episodes and taking that he had his ENT procedure on the 6th June it would make perfect sense that we'd still be getting over the trauma and recovery. Here's the thing...there's wasn't much of a procedure to recover from. Up until the 4th June Sam was still scheduled for another glaucoma examination, scraping of the adenoids, a new set of grommets (his right eardrum burst on his birthday) and, of course, a tonsillectomy.  But at our usual is-Sam-okay-for-theatre consult Doc Paed mentioned that since Sam's last course of incredibly-easy-to-administer antibiotics (have I blogged about that yet?), his tonsils were not only looking quite good but appeared to have shrunk a little, making him still uncertain whether removing them at this point was going to bring with it more benefit than trouble. Doc Paed said he would give Doc ENT another call, which I was relieved about, and would get back to me. Unfortunately life happened and by the morning of the 6th I had still not spoken to Doc Paed.
I like being prepared so it was a little troubling arriving at the hospital an hour before the procedure and still not knowing exactly what we were doing.  As a result there was a very awkward "moment"  (about a 15minute long moment to be precise) in the theatre waiting room where everyone stood, fashionably garbed in their attractive green surgical gear, waiting for some kind of indication as to where we were going with Sam's tonsils...the porter looked at the nurse...the nurse looked at the ENT...the ENT looked at me...I looked at the random dude walking behind me.
"Oooohhhhhh! You want ME to make the call? Jeez, why didn't you just say so!"
So, trying to buy some time while my little mind worked desperately at untanglying itself from the frightening web of uncertainty and blankness it had found itself in, I ventured, "So, I know what the possible challenges would be if we went ahead with the tonsillectomy. What would be the benefits of doing it now as opposed to, say, in a year....or fifteen?" 
Sam wouldn't snore anymore.
Sam doesn't snore.
No more tonsillitis and better health.
Sam has only had tonsillitis twice in more than 15months, the rest were all throat infections. As far as better health goes, while this is often the case it is not a certainty though - Meg had a full ENT procedure when she was 3 years old (grommets, adenoids, tonsils removed, sinus, drain, etc) yet without fail she will get at least one bad throat infection each year and/or sinusitis, etc.  I have no doubt Sam will follow the same pattern.
From round 4 years old pain becomes memorable to a child so ít's best to do the tonsils before then.
This was the answer which finally made up my mind (well, that and that I'd in the interim heard the one anaesthetist mentioning to the other that she'd spoken to Doc Paed the previous day and he had re-iterated how strongly he felt about us not touching Sam's tonsils for now).
Please don't misunderstand me...Sam has a wonderful ENT who was simply advocating what has been found to be the most effective approach when dealing with a normal set of ENT issues. However, here in Smurfville, we don't do too well with normal.  Almost two years down the path, we are still dealing with regressions brought on by oh-so-very-memorable pain (to Sam at least) from previous surgeries and while recovering from a tonsillectomy in most kids takes anything from a couple of days to a couple of weeks and then they move on, Sam will embrace the pain, smother himself in it, make it a part of him and then quickly find a way to adapt to it as if it were going to be a permanent part of his life usually in the form of regression...sort of like when, after having his first attempted testicle repair requiring the testicle to be attached to a blood vessel for several months in the groin area, he associated the pain he felt when sitting with the actual action of sitting and more than 2 years later he still resists a sitting position even though the testicle was removed 6 months later.
So Sam's tonsils remain endearingly attached to his throat and while I truly appreciate all the advice and concern shared, I have to say that I am beyond relieved that we chose not to take them out as 2 days after the procedure Sam managed to catch a rather feisty tummy bug and spent the next few days displaying some very impressive projectile vomiting.
The weekend before this rather melodramatic episode we spent in Stilbaai celebrating Chris' 40th birthday with family. We have been really shameful on the photosnapping front and once again forgot to pack a camera in so unfortunately have few pics to share, including a poor phone-quality photo of Sam drinking his bottle along the way.  

Usually a 4 year old kid drinking a bottle would not be considered a blog-worthy share...unless it was a kid who, for more than 3 years, reacted to the touch of his bottle as if it was covered in layers of splintered glass which caused unimaginable pain every time his hands made contact with it. For the past few months (perhaps even longer) I have really persevered with getting Sam to hold his bottle, even at times resorting to simply placing the bottle in front of him and hoping that eventually I would be victorious in this particular battle of the wills and he would just take the bottle and drink.  But each attempt brought with it the same reaction, Sam would visibly cringe, throw his hands up in defense and then relentlessly sign "bottle" until I eventually gave it to him myself. When we celebrated Sam's 4th birthday on the 15th May (again forgetting to take pics) it would be fair to say the occasion brought with it a little sadness that we'd not achieved any new milestones over the last 12 months.  Exactly one week later, halfheartedly offering Sam his bottle, he simply took it out of my hands and drank.  Of course I squealed in excitement throwing Sam into his own sensory overload which landed up seeing the bottle thrown across the room.  But he took it again in his own two little hands after that anyway...and every time thereafter too. Travelling over a particularly bumpy section of road on the way to Stilbaai Meg still tried to take the bottle from Sam to help him but he absolutely refused. 


Coping more comfortably with heat than with cold, Sam struggles to leave the warm bed every morning and can sometimes spend up to an hour iPadding first before he makes his first move. Stilbaai's chilly mornings were no different :)
As I've mentioned, on the 15th May Samuel turned 4.  Scary stuff really.  What's even scarier is that he is weighing in at just under 15kg's at the moment and, with an increasingly healthy appetite, he seems to be picking up weight almost daily...or so my arms, back and neck tell me.  I'll definitely have to start encouraging him to use his walker more often, even on short trips to the shops and the like.  I have no doubt Sam will manage okay with this but having already received one or two disturbingly close to pitiful looks recently when strangers have seen him using his walker has made me a little uncomfortable.  Think I need to build a bridge....
We kept celebrations low-key for Sam's birthday and the morning of his actual birth day was spent at the docs attending to his burst eardrum.  Thankfully at our follow-up appointment with the ENT last Friday he advised that the eardrum was healing well and looking quite healthy again.  With just over 3 weeks between his birthday and the ENT procedure, I don't know how Sam tolerated the pain and discomfort caused by his perforated eardrum and all the gunk blocking up the ear on top of that.  Even more surprising is that in the period leading up to the ear issues, Sam's sleeping problems had steadily eased off and although we've certainly had one or two restless nights here and there, we're definitely in a much better place than we were a couple of months ago.  I'm not sure if it has anything to do with it #feignsinnocence but we decided to transition Sam to a bed a few weeks ago as his body bashing in the cot at night brought with it the added worry of him hurting himself.  The new bed is a bit bigger than the kiddie character starter beds you get, but still smaller than a standard single bed.  So to get Sam used to it first, we sandwiched his bed between the wall and our bed. Six months ago the 15cm height difference between the 2 beds would have been a major obstacle for Sam and enough of a barrier to keep him in his own bed. Heidi however has been building little crawling obstacle courses for Sam over the physio blocks, etc so it didn't take Sam long to figure he could simply crawl on into our bed and that's where he's been sleeping every night since. On the odd occasion when he would fall asleep in his own bed, by 10pm at the latest you'd get a little tap on the shoulder and he'd hand you his pillow and invite himself in. It being the middle of Winter here and Sam constantly kicking off his blanket, the arrangement works alright for now as it means I don't have to get up several times during the night to cover him up...and he is just so snuggable too.
I know I've left heaps of details out...somewhere in between all of the above the girls and I attended the Justin Bieber concert, which was a real treat for Meg as she has had to sacrifice too many outings, etc due to Sam's health and/or often unpredictable behaviour.  There was a visit to the orthopaed to follow up on Sam's feet (which we'll also be leaving surgery-free for yet a while longer-phew) and more recently a really lovely visit from one of the ladies from Iris House  and of course there have been exams, the start of the hockey season and various other events in between.  Right now though we have one more early morning left and then three weeks of just chilling during the school holidays (with the exception of therapies of course) and then we find ourselves in the second half of the year already.  My mid-year resolution (if we have to tolerate the increasingly popular Christmas-in-July fad, we can definitely do mid-year resolutions too) is to try and blog more often.  Don't hold me to it though :)
Random Pics :

A little bit of walker-jiving to Hi-5

Doc Paed suggested a 7,5ml dose of Aterax when leaving home already as a pre-med, which worked like an absolute charm. Sam was pretty calm by the time we got to the hospital on the morning of the 6th and we didn't land up with the same scenario as last surgery where he went into theatre with the last dose of pre-med still in his mouth.

It took about 45mins for Sam to completely recover from the anaesthetic (which 45 mins consisted of non-stop crying) but then he spotted Teletubbies on the hospital tele and was happy to share his cot with mom while watching.


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