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...
SAMUEL - COMPLETE IN GOD
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 happening....to 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

NO WAYS!


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 concerts...as 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 issues...in 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 ;) 

Friday, November 9, 2012

PainfUL Blogging

THIS IS WHAT MY TYPING looks like if I don'T TAKE THE TIME TO "FIX" IT AFTER EVERYTHING i type.  the caps lock key has a (warped at that) minD OF IT'S OWN and KEEPS GOING on anD OFF AT really rapid, RANdom inTERVALS.

I've tried to outsmart the key by non-chalantly reaching for the keyboard when the key goes off, pretending to look elsewhere whilst whistling a merry tune, but in the split second before my finger touches the keyboard the little light starts its flickering dance...it is pure FrustRaTION at ITS utMOst!



Of course we can take the computer in to be repaired but apart from the worry that having your pc repaired usually results in acquiring some problems you didn't even have to start off with, it will apparently take 2-3 weeks before I have it back! That would be like telling me to survive without air or, horror of horrors, chocolate for 2-3weeks...this is my lifeline to our RTS family after all. Take yesterday for example, the whole no sleeping/lots of jiving thing was really getting me down (that and surviving on little scraps of sleep here and there) so I posted the video's on our RTS Facebook group and it turns out that Sam is by no means the only little RTS sweetie who has dealt/is dealing with this problem...and here I was thinking that my littlest dude did not think being 1 in a coupla hundred thousand was unique enough. Nothing makes it easier to deal with a new challenge than knowing you're not doing it alone, whether it's a few minutes or an ocean or two separating you from your support.

Sam's OT is busy doing some research on Rhythmic Movement Disorder which we'll discuss on Tuesday morning and then I've set up an appointment with Sam's paed on Wed morning to discuss doing a sleep study. At worst, the net information indicates that most kids suffering with RMD tend to outgrow it by the age of six...WooHoo...only another 1,OOO or so sleepless nights to endure! And some say this whole silver lining thing is hogwash...tsk tsk.

Thursday, November 8, 2012

Smurfy Jive : Sleep Wars (2) : Any thoughts?

So we had four really good nights last week with very little sleep-jiving going on and when it did, it would last for 30secs to a minute, max...especially Saturday night when Sam did another awesome straight sleep through until just after 5am.  From Sunday evening though we were back to the very challenging rocking/spinning/jiving/whatever-you-want-to-call-it with another awesome three hour non-stop session this morning till about 4am.

I cannot for the life of me figure out what was done differently between the two nighttime scenarios as I am trying super hard to to keep Sam's days as strictly routine as possible. 

Below are video's of the two different types of rocking/jiving that Sam does...this is the "good" version which he does when he's merely trying to fall asleep. At least here I can still try and communicate with him and attempt to soothe him. At night however he seldom wakes up during these little jiving sessions and is far less cautious, eventually banging his head into whatever hard surfaces he can find.  And if you try and restrain hin or place something soft around him to cushion the blows, he becomes even more agitated.

The videos give a rough idea of the type of movement Sam does...I am really keen...no...pretty desperate at this point to find out if there any other children from our RTS/special needs family who do this?
video
video

Saturday, November 3, 2012

Smurfy Swagger...this is how I roll (2)

video

So I think I have mentioned how Sam's physiotherapy sessions usually run but just in case I haven't - we start off in the neurotherapy room where Heidi works on balance, crossing midline, transitioning from kneeling to standing, some roller and mirror play, etc. I'm sure most of you are pretty familiar with that drill already. However, when it came to lying Sam down on the mat for some serious stretching, he used to have one hectic smurfy-wobble. If the poor little dude won't even SIT on the floor because of all his SID issues, what are the chances he'd be happy lying, right? So for quite some time now, Heidi finishes Sam's therapy off on the normal physiotherapy tables attending to all his stretches while he lays, quite calm and relaxed, with the speakers from the iPod whispering all his favourite tunes ("He's Got The Whole World" is the current favourite) into Sam's ears. A few months ago Heidi started introducing Sam to the walking trolley but, as expected, he was petrified of being left holding on on his own so Heidi would support his torso as he walked himself over to the therapy tables. Last week, however, Heidi sneaked away mid-walk and Sam quite happily continued the walk on his own. For fear of distracting him and initiating a fall, I opted against whisking my phone out to video the scene...but this week I was prepared!!!

I watched the video over and over and over with excitement.  But then, still quite unexplainably, it made me heartsore. And I had to stop watching it.  I've thought about the whole incident alot over the last few days, trying to figure out how such a huge achievement for Sam could possibly make me sad.  It's difficult to put into words but I think most of the time I tend to see Sam as "normal".  His little unique way of being has just so completely become our normal that I don't always think about how the outside world sees him. Watching him in the video, he seemed so incredibly fragile and almost *lost*...I don't even know if that's the word I am looking for. My heart just suddenly became extremely heavy with all of the struggles and challenges he faces each and every day...and maybe, just for the briefest of moments, I desperately wanted him to be a *normal* three year old...the outside world's normal, not ours. 

Is that terrible?

In my defense, we are severely...and I mean SEVERELY as in literally walking into walls, forgetting destinations en route, having serious speech malfunctions...sleep deprived in Smurfville. In 62 days we've had 2 nights of proper sleep (being from 9pm till round 5am without any significant waking episodes) and 3 nights of somewhat-disturbed sleep, as last night was...sound sleeping from 9pm till round 1am and then about 3 hours of that soul-destroying rocking/violent head banging before Sam eventually exhausts himself and has another hour long nap or two. The other 57 nights start with the rocking/head banging within an hour of Sam going down. We have now resigned ourselves to having to put Sam through a sleep study.  I do know that many of Sam's RTS siblings have undergone a sleep study, some of them more than just on one occasion, but I also know that Sam (the very same Sam who tolerated having his blood drawn with some pretty mild whimpering and then proceeded to indulge in some projectile vomiting when Doc Paul simply placed a plaster over the tiny puncture wound) is not going to do too well with having his head and chin covered in probes and tape for 24 hours. But if the sleepless nights aren't enough motivation to find a way, then trust me that having to manage this little smurf the day thereafter, sure is. Let's just say that there are tantrums a-plenty and leave it at that.

When not fighting sleep or throwing tantrums so severe they measure on the Richter scale, Sam's current favourite pastimes are lots and lots of swinging...almost always accompanied by his music...



 ...or iPadding.


 Sam is seriously addicted to his Signing Times app at the moment but it apparently only has the desired effect if he is nose-to-screen with the iPad, at the very least...there might even have been some licking involved.


Some serious contemplation after a particular window drawing episode I Facebooked about:


 I attended my 20 year High School reunion last Saturday...and it was *awesome*.  Not just to see everyone and catch-up but also the pure bliss of having a couple of hours breathing time. I sneaked into the house at 12:50am...just in time to catch Sam on his 1am wake-up call...so Sunday was a super interesting day...LOL! But it was still so worth it...looking forward to our 20yr and 1month reunion on the 27th of this month...woo hoo!!

Okay, perhaps a little too eager then :)   

Me and the gals, Sam and Debbs. Can't believe my head was still wafting around everyone's knees despite a mean pair of wedges I was wearing (which wedges also contributed to a very attractive bruise I was sporting at the reunion, after wiping out at home before I even left. 
Absolutely have to get out more *sigh*)