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)

Tuesday, November 27, 2012

Sleep Wars (3) : A changed strategy


I cannot believe it's been so long since I updated the blog. Life, as always at this time of the year, is a nerve-wracking whirlwind of various concert rehearsals, studying for exams, tears and sulking associated with studying for exams, more concert rehearsals...trying desperately to think of cost-effective but excitement-yielding gifts (Yes, Disillusioned *is* in fact my second name)...the actual exams...the actual they say, time flies when you're having fun? ("Disillusioned" seems to be a popular second name).

So, taking everyone's chaotic schedules into consideration, here is a condensed yet thoroughly comprehensive summary of the Sleep Wars Saga over the past few weeks :

First we didn't sleep, then we did, now we don't. 
The End

And now for the more detailed version...

On the 14th Nov Sam and I went off to see Doc Paul, after sending him a brief e-mailed explanation of what had been going on with Sam's rocking-and-rolling nighttime jiving.  I find this a hugely beneficial exercise for both the doc and us (the pre-consult information, not the rocking-and-rolling) as it gives them time to research the scenario completely and come up with a workable solution in less than the few minutes assigned to each consultation.  The sad thing is that I am quite often disappointed to find that the doctor has not read the e-mail or, as was the case with a recent new specialist's appointment, was asked by the receptionist when requesting the doctor's email address, to not send her an e-mail as she would not have the time to read it. Thankfully Doc Paul had taken the time (major smurfy kudos to him) and had obviously given Sam's situation enough thought.  Ultimately Doc Paul shared Sam's OT's view that Sam's sensory and high-anxiety levels have reached a point where basic occupational therapy exercises like brushing, swinging, etc are not as equally intense as the symptoms themself.  While he agreed that it was time to resort to medication, he explained carefully why meds like Vallergan, Urbanol, Aterax, etc are not the most efficient treatment and that if Sam has had a bad reaction to just one of those, he would more than likely react the same to the rest of that "group" of meds as well.

So instead he prescribed a very low dose of Faverin for Sam which effectively is an anti-depressant when used for adults, but has been found to be extremely successful in treating children with high anxiety and/or OCD/repetitive behaviour other words...Samuel. It takes approximately 2 to 4 weeks for the medication to start working at its full potential and we are only on Day 12.  The first few days and nights there was no remarkable improvement, then Wed-Fri nights we had absolute, pure BLISS with Sam sleeping straight through from 8pm-ish to after 7am without any rocking-and-rolling or practically any movement at all going on.  And all was well with the world...well, other than that Sam was not in the least bit amused at waking up in his own bed as opposed to snuggled comfortably between Mom and Dad.  And this is where the inspiration to change his strategy was born. 

On Saturday night, or rather Sunday morning, somewhere round the unearthly-wee-hours our littlest dude woke up.  He didn't rock-and-roll in his sleep. He plain and simply woke up.  And decided it was as good a time as any to play a little peek-a-boo with the duvet, search excitedly for imaginery Po's and La-La's lurking within the blankety darkness and practice his most awesomely adorable smiles and giggles. Ai Ai! What is a mom to do when confronted by such ruthless and unleashed cuteness? Well I tell you what she simply CANNOT do....ignore it.  So my giggle-stifled, mock-scolding commands that Sam lies down and goes to sleep were most certainly not obeyed by the little smurf.  Unlike Chris (and probably most other dads) I've yet to master the art of ignoring such antics, no matter how desperate I am for sleep.  Sunday night was pretty much a repeat of the previous and last night we did about a half-hour of playing and about an hour of rocking-and-rolling before Sam eventually went off to sleep again.

While our sleeping issues at night are still very much a work in progress, there has definitely been a huge improvement with Sam's behaviour during the day.  The snowballing lack of sleep was making him quite heartbreakingly difficult to cope with during the day with more meltdowns than I'd like to remember.  There are still tantrums and frustrations aplenty, but nothing in comparison to our pre-Faverin journey.  And, while there are still occasional nap-starved days, the norm over the past few days is hovering around an hour to two hours napping in the afternoon - YeeHaa! One out of two is quite satisfying for the time being ;) 

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