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, September 21, 2012

Straitjackets, Melatonin and some serious v-wording

So exactly 20 days ago we moved house. And exactly 20 days ago we turned an already anxiety-filled and sensory turmoiled world upside down for Sam.  I knew Sam would go through a period of being unsettled and super-di-dooperdi defensive...but boy was I clueless.  A little more clingy? For sure. A little more vomit? Would it be Sam if not? A few extra meltdowns? Heck yeah! Even more disrupted sleep than usual...bring it on! But....and that's a smurfinormous big ol' BUT...hours-upon-hours of freaky nighttime spinning from side-to-side? Well that one just completely threw us over that exceptionally fine line between coping and grappling for those lovely white straitjackets.

I won't deny that there have been one or two days during the last 3 weeks when I shed a solitary tear while trying desperately to bring Sam around, amidst screaming and vomit, from one of his emotional overloads while listening intently for the doorbell indicating that one of our, now too-close-for-(Sam's)comfort, neighbours had finally resorted to phoning either the police or child welfare or both to please come and rescue the poor child next door who was obviously being barbarically abused by his mother. Surprisingly no such rescue has yet taken place, despite an hour-long meltdown last Friday morning. And yet all of these hiccups would have been so much easier to cope with if it weren't for the even more stressful nights.  Before the move, the evenings at least provided an hour or so to relax in front of the computer or tv and then grab a couple of hours sleep (albeit it sometimes disturbed) to rejuvenate for the next day. By Monday morning, after less than an hour's total sleep, the situation had become desperate.  Sam's OT has been keen for me to take Sam to a very well-known neurologist paediatrician as she is worried that Sam has reached a level of anxiety and sensory disarray that cannot be overcome without the help of medication.  I have been extremely hesitant to resort to this as, as fiesty and challenging as what this little smurf is, he has the most awesome spirit and I would hate to do anything that might change his personality or break this spirit.  Dr B once told me that he believed the key to Sam's sensory problems was firstly patience and secondly acceptance that, to a degree, they would always be there...with which I totally agree. But by Monday morning I had to consider the affect all the sleepless nights and anxiety-filled days were having on Sam so off to the neurologist we went. 

The consultation was not one of our most charming...Sam vomited all over the place the second the doc touched him, which sent Chris back to work covered in a little eu de puke. What we did manage to take away from the appointment was the possibility that Samuel's spinning was more a frustration-filled reaction to not being able to reach deep sleep and then stay there, as opposed to a frenzied attempt at self-soothing.  We were given a prescription for Choral Hydrate to assist Sam in reaching deep sleep but were told by the pharmacist that it has been completely removed from the market.  The doc then faxed through another script yesterday morning for a nightly dose of Melatonin, with which I have no argument against as I know many of Sam's RTS siblings use this, as well as 5mls of Urbanol.  Mmmm..Google? Of course! Only to read that Urbanol is predominantly used in patients with Epilepsy and also has some cautions regarding use in patients with respiratory disease and apnoea. Now I don't know if obstructive apnoea is relevant with that caution, but Sam sure has had one or two respiratory issues in his life.  So, in utter uncertainty whether to try these meds or not, I sent a Whatsapp message to Dr Sinclair just after 5pm  :

Sidestep : I sent a Whatsapp message...not a polite email or professional phone call...a rather forward infringement on his "personal space" even I have to admit.  And it is not the first time I've done it (there was a brief panic moment at the beginning of the year when I thought Sam might have come in contact with Measles). And within five minutes, Doc Paul had replied.  By now, you all know how much I appreciate the rather few "Wow!" doctors out there so I can assure you that having such a quick and (seemingly) unoffended response to a seriously sleep-deprived and insanely emotional mom who is literally counting the minutes away to the possibility of another crazy night with a certain little smurf, is beyond invaluable :) There are just too many docs who would've asked that I rather bring Sam in instead, for fear of missing out on a consult fee.

Anyhoo, Doc Paul okayed the Melatonin but was also wary of the Urbanol. So come 7pm I readied Sam's Melatonin, even more delighted at the fact that it has no real taste and dissolves super easily in a little water. Within half an hour, Sam was yawning and satisfyingly sleepy - Woo Hoo! Success! Really? Of course not - Sam first started shaking, then started crying and then started vomiting...and vomiting...and vomiting. Definitely not reflux because reflux, unfortunately, doesn't come with such a prologned warming-up warning. Knowing of so many children who are doing quite well on Melatonin I didn't even bother to read the possible side-effects, not least of all because the pharmacy had stuck their label right over it.  But when the v-wording started we tried to peel what we could off the container and could just make out that Melatonin can, although rarely does, induce nausea, cramping and vomiting.  Oh Sam...tsk tsk...the relentless lover of all things rare, unknown and one-in-a-million (or would that be 300 000) chance worthy.  So another restless, crying, spinning and largely sleepless night was enjoyed by all *bangs head against wall*

Amazingly enough, the only thing that hasn't really been hugely effected by this whole moving upset is Sam's eating. He had a few wobblies with most of his therapies which were mostly spent with his arms tightly wrung around my neck.  There were two really entertaining sessions week before last though, one OT and one ST, where Sam vigorously demanded that both myself and the relevant therapist, Christa and Tanya respectively, sleep on the floor which is a command he loves watching on his "Verbs with Milo" app on the iPad. It would have been terribly funny to watch, I am sure, and the fact that both therapists were so animatedly accommodating just made it all that more amusing to Sam.  Although there was one rather challenging session, also suprising is that Sam's physio sessions have remained relatively unchanged.  Sam is doing loads of "walking" at the moment, mostly to keep those tendons nice and flexible in the hope of avoiding that surgery Sam's orthopaed mentioned but also because Sam quite enjoys being on his feet now.  I no longer have to hold him securely around his torso, but allow him to take his full weight on his feet with just my hands on his shoulders providing a little bit of pressure and the occasional safety catch when he does lose his balance. 

Sam has also been making some new sounds..."th" quite often as well as "sssss" and even made a startling almost-proper-sound on Monday evening which sounded something like "Buff" (obviously referring to himself of course). Even more fascinating is the number of signs Samuel has taught himself from the Baby Signs app on his iPad. His physical development and sensory processing make-up might be all over the place and stagnating, at best. But that little mind is running full steam ahead and just soaking up every bit of mental stimulation it can.  I can just see him in 30 years time....sitting at a rather fancy desk, happy-flapping and spinning around on his chair atop a vomit-spewn carpet and half-chewed nameplate sporting the words PROFESSOR SAMUEL "SAM-THE-MAN, SMURF"' DE BEER.  Hehehe!

While it seems as though Sam The Conqueror is fast becoming a monthly blog, it is most definitely not intentional.  With any luck and a whole lotta prayers we'll get Sam back into the swing of things before I forget my own blog addy. But till then, this is what we had to resort to today :

Makes for not great quality posting and a really sticky keyboard but a post nevertheless  :)

Waiting for Tanya at speech therapy on Thursday - such a big boy. Doesn't matter the mag was upside down, he would just grab one from the stack next to him, turn it around and throw it on the floor.

And big boys need big boy yummy french toast

Has to lean in super close just in case he misses something

Sleep or no sleep, he's just too darn cute xxx

1 comment:

  1. Oh, Nicky... you have my sympathies in a MAJOR way!!! We have been dealing with some big time sleep issues ourselves, though not to the extent that Sam is suffering. I wish I had some advice for you, but Melatonin has been a big bust for us as well. We are going to try another sleep study in a month, and go from there, but in the meantime, we join you in the sleepless parent club. I hope Sam gets settled in soon so you all can enjoy your new home. (((HUGS)))