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, October 19, 2012

Smurf @ Pooh Caves

Last weekend Sam's Ouma and Oupa arranged a weekend getaway for the family at Pooh Caves (aka Guano Caves) to celebrate their 70th birthdays.  Making plans so far in advance is usually a bit of a gamble with little smurf but we were blessed not only with a healthy little boy but some pretty stunning weather too. Samuel loved being surrounded by his cousins and of course, absolutely adored the warm water pools.  This, together with the relaxed surroundings and great company, made for a pretty awesome weekend :)

Sam sharing his iPad (although sometimes a little reluctantly) with cousins Dirk and Kayla who both desperately wanted to have a go at the iPad many a time but were super obedient of their moms' instructions about not touching unless invited to do so - kudo's to moms Deirdre and Cindy ;)  Kayla was too adorable with Sam, who loved having her read to him (the most charming fairytale concocted from a Learning about Numbers book...and in English for Sam's benefit) and even quite happily allowed Kayla to play with his hands and hair. I found her questions about Sam's speech and thumbs so precious and even more endearing, her reassurances to me that "Sammy" IS going to walk AND talk. 

The "tent house" we stayed in which, quite surprisingly, worked out just fine with Sam as it had carpeted floors so he could at least have a crawl around every now and again.

Sam suddenly found himself cured of his on-again-off-again aversion to balls and thoroughly enjoyed throwing Dirk's ball around. Aunty Deirdre and Uncle Hendrik giving mom and dad a very-seldom enjoyed chance to sit down and eat together xxx

Of course all the waterbabies could think about was hitting pools.

And they weren't the only ones....Sam in blissful happiness

A quick break to attend to some sensory-seeking munching...

...and his off again.

For the first time ever I felt the stabbing heartache of having Sam push me away...LOL! The first pool we swam in was fairly deep and I could just about hold my head above the water while on my tippy toes which didn't give me much space to hold Sam. So it was up to Daddy to see to Sam in the pool and Sam adored being bounced around and swished through the water. When I tried to take him a while later he point blank refused to come to me and even pushed me away on more than one occasion when I even just came near, in case I had any intentions of taking him.  I am obviously just not as much fun as his dad, well in the pool at least. Oucherooni! Sniff Sniff!

Braving, but not loving, being on his tummy. 

Sam trying to make friends with two random little boys

That look says it all...Fun! Fun! Fun!

Goofy Smurf!

Unfortunately we didn't keep the camera with us all of the time so missed out on loads of pics of the entire family and all Sam's cousins...and most importantly, the birthday couple.  Next time!

Dankie Ouma and Oupa vir 'n baie lekker naweek xxx

Wednesday, October 10, 2012

Sleep Wars Continue

The title really sort of wraps it all up, doesn't it? Of course after I jinxed the good night Sam had last Wednesday by blogging about it on Thursday, he's been stirring every evening round 12:30ish...sometimes thrashes around for a coupla minutes...sometimes for a coupla hours...and then falls asleep again after that, still with lots of jerky twitches.  Last night Sam woke the usual time, screamed as if he was being barbarically tortured for an hour or so and then drifted off again.  Perhaps its time to accept and come to terms with the reality that this is Sam's new sleep pattern and find a way to adapt to it.  Don't ask me how one possibly does that...any idea's?

Both occupational therapy yesterday and physiotherapy this morning were a treat though.  Yesterday Sam's OT was trying to encourage him to play with playdough which he kept refusing to touch, although he was quite happy watching her cut out the little burger-and-fries shapes. The little french fry cutter was adorable and of course both Christa and I kept remarking on the little "chips" she was making.  Sam looked at Christa, looked at the teeny playdough shapes, seemed to think "What? Chips? Why didn't you say so..." and promptly tried to put one in his mouth! After I've figured out how to adapt to the new sleep pattern, going to find me an edible playdough recipe...only way we'll get Sam to touch the stuff. 

Strangely enough Sam's been quite relaxed at touching new textures during his other therapies. He's a real character, isn't he? Is joyfully "verbal" and eager to show off his signing during physio and OT, but refuses to do either during speech therapy.  He'll happily mess with kiddies foam on the mirror at speech therapy or spend ages taking foam animals out of a container of water, placing on a mirror and removing again during physiotherapy but refuses any contact with textures during occupational therapy.  I sometimes think we completely underestimate that little mind.

Shopping trips have proven a little easier to manage lately...well up until yesterday that was.  When taking Sam for a walk, I'd started strapping the iPod to his pram with a little velcro speaker attached, which he seemed to love and was quite content to listen happily to He's Got The Whole World in His Hands over and and...and over (beats my squawky rendition which is all we had before).  So when needing to go to the shops last week I thought what the heck, let's give it a shot.  Other than getting a few odd stares at Sam's "dancing" (in other words, serious happy-flapping) it proved to be an awesome hit and we even managed an extremely painful (for us that is) two-hour long hunt through Canal Walk over the weekend.  But in Smurfville all good things come to an end...far too quickly. And yesterday the iPod decided to go on the blink. Disaster. Not only for the shopping benefits, but also because thats the only way we manage Sam through the streching part of his physiotherapy.  Luckily Heidi worked super-quick through Sam's stretching this morning and had finished just as he started seriously protesting.  So...after I've discovered awesomely successful ways of making Sam's new sleep pattern work for us and found a delicious and safe recipe for edible playdough...I am going to design a sensory friendly pram/buggey (with regards to colour, depth and position of the seat, height, etc) with built-in speakers around the frame where one can simply plug in your iPod.  Think it'll work?

But before I get started on the above, we are hopefully headed off for a weekend away to celebrate Sam's Ouma and Oupa's birthdays this coming Friday.  We seemed all good to go until last night when Meghan started coughing and Sam woke up sounding disappointingly croupy this morning.  Just four nights of germ-evasion...that's all we need. Headed off to the shops this afternoon, devastatingly iPod-less, to stock up on immune boosters and the likes.  Holding (angulated) thumbs x

Thursday, October 4, 2012

Smurfville under Construction

Four weeks ago, on the 6th September, Samuel acquired a lovely little niece named Mia.  (The fact that Luke thought 38 was as good an age as any to make me a grandmother *ouch* is a whole other blog on it's own).  I was quite eager to see how Sam would react to a real baby so close up, as he gets super excited when he spots other "babies" (which is roughly any child between 0months - 10years old for Sam).  With Mia still being so tiny and not providing Sam with much entertainment value, he seemed generally disinterested. And then, one afternoon, as we all climbed into the car, Mia cried.  And then Sam cried.  And then Sam screeched in sheer distress.  He was thoroughly and completey upset.  He's developed a tendency to start whimpering himself whenever he sees another baby/child crying on tv but has never quite become so upset.  If it wasn't so earth-shatteringly painful on the ears, it would've been kinda cute :)


So we've said our final goodbye's to 20 Hillary Street. The place I crashed every evening for 9 weeks after spending hours on end at the NICU when Sam was born.  The home that saw Sam cast his NG tube aside and finish his first bottle, that saw him sit and and crawl for the first time, where he recovered from his first four surgeries and in return was showered with litre upon litre of v-word secretions. Yuggghhhh! A house ain't a home till its received the eau de puke treatment, luckily Sam's already taken care of that in the new house.

Where Sam's passion for slides was born :)

Possibly the tallest tree in the neighbourhood. Stood more than 20 metres high and was easily visible way before we even neared our house, even for Sam. Proved invaluable on Sam's much-loved car trips as a marker that he could relax as we were near home.

We almost said our final goodbye's to the Ferocious Beast as well as the new owners surprised us (most pleasantly) by saying they'd be more than happy to have Max stay on with them. This was the plan up until last week and then the thought of having to leave him without even giving him a chance in the new place, somewhat tiny as it is, just seemed like giving up too quickly. So Max came across on Saturday and, although I am not sure how easily Max is adapting, Sam is loving having Max there to occasionally chat to through the gate while softly rubbing Max's fur.  Being the awesome people that they are, we've been assured that Max still has a home with the new owners if things don't work out here with him. 

So, since our dismal v-wording first attempt with Melatonin, we seem to have found a workable gameplan for Sam's sleeping for the time being, which is still all over the place.  There were two fantastic nights, one when Sam woke for the first time after 2am and the other after 5am, but the rest still filled with lots of disturbances and restlessness happening anything from every 2 hours to every 20 minutes.  The general pattern is that Sam falls asleep pretty much as (Sam's) normal.  But then within an hour the trouble starts either with him seeming to have an uncontrollably itchy skin mostly on his tummy, back and legs and/or rather violent twitches in his legs and very occasionally, in his arms.  The itchy skin is obviously because of his eczema but the twitchy legs is the tricky part. Even when Sam resorts to that horrid spinning, it starts with his legs and that's where the core of the spinning remains...with him rocking his body from side-to-side with his legs. After another trip to the doc, it has been agreed that Sam almost certainly has Restless Leg Syndrome I do vaguely remember this subject being discussed either on the RTS listserv or the FB group recently, indicating that there are other RTS sweeties struggling with RLS as well, sort of confirming the diagnosis.  Apparently RLS in adults is treated with the same medication as used by Parkinsons Disease sufferers but to Dr B's knowledge there's not much that can be done about paediatric RLS. Dr B also noted that on both Sam's scars from the TSC surgery and the removal of his right testicle, there's a section where the scar tissue has become tethered to the deep tissue underneath and thinks that these three issues, together with Sam's usual SPD challenges, are all contributing to his sleeplessness.  While there's unfortunately no remedy at this point for the RLS and problematic scars, we can at least treat the eczema with some Aterax for a while. A few nights ago I tried the Melatonin again and so far we've had no v-wording episodes and last night added the Aterax to the mix and, with the exception of waking twice for mere moments, Sam slept through till 7am this morning. Celebrations!!!  Of course the fact that I have just blogged about it will almost certainly guarantee that tonight will not be as successful *sigh*   On the upside, I don't think my body can handle that much sleep anymore...the day after Sam's straight sleep till 5am, I felt absolutely lame all over and really rather I'd expect to feel after having had no sleep instead.  So it's really for my own good to have Sam slowly phase the good nights in, right? As long as I keep telling myself that, we'll be okay :-)