Sam. Conqueror. Overcomer.

"IN ALL THINGS WE ARE MORE THAN CONQUERORS THROUGH HIM WHO LOVES US : Samuel was born on 15th May 2009, two months early and in respiratory distress. After an initial Apgar score of 1, he was taken to the NICU and placed on a ventilator, together with an undeterminable amount of tubes, IV’s and monitors which made it almost impossible to see the little Smurfie character lying within…slightly blue and only three apples high. Sam was diagnosed within 24 hours with Rubinstein-Taybi Syndrome, a scarce medical advantage as, due to the rare occurrence of the Syndrome and the limited medical literature on it, many individuals are only diagnosed well into adulthood and some never at all. The page-long list of medical/health issues related to the syndrome, while vital in providing a prognosis and compiling a care plan, took a backseat, however, as Sam’s struggle to breathe and swallow became the primary focus of our concerns and prayers, deepened only by the heartache of not being allowed to hold and comfort him for the first ten days of his already traumatic life. After seven weeks Sam was successfully weaned from the oxygen but was still dependent on a nasal gastric tube for feeding, with which he was eventually discharged. Once home, what should have been a precious time to recover from the stress of the NICU and enjoy a relaxed and cherished time together, instead became a seemingly-endless timeline of specialist appointments, therapies, illnesses and surgeries as that page-long list of medical complexities came into play, affecting every part of Sam…physically, neurologically, medically and emotionally. Yet, despite these challenges and an “ineducable” future being predicted when his prognosis was delivered, Sam showed a delightful potential and eagerness for learning. Unfortunately though, this learning potential seemed limited to his cognitive abilities as, physically, Sam’s development lagged significantly behind that of his RTS peers. A week before his 5th birthday a brain MRI confirmed that, in addition to the RTS, Sam also has Periventricular Leukomalacia and Static Leukoencephalopathy (included under the umbrella diagnosis of Cerebral Palsy), which would more than likely have occurred as a result of the oxygen deprivation experienced leading up to and/or during his birth. Thirteen years later and with a number of surgeries and medical procedures which appear to be in fierce competition for their own “page-long list” (which surgeries and their subsequent recoveries have left Sam to face his day-to-day life with a residue of unshakeable anxieties and phobias), the boy you meet face-to-face…with his cheeky sense of humour, unfathomable joy and fierce warrior spirit…make it almost impossible to believe that that disheartening brain MRI and poor medical prognosis are of the same kid. As we begin to navigate this journey with a newly aged differently-abled teenager, leaving behind the little smurf whose fears and discomforts could so easily be remedied with a cuddle on mom’s lap, the anxiety of more surgeries and medical challenges now compounded by the universal fear of every differently-abled child’s parent/s (who will take care of their child once their own time here is gone) threatens to become overwhelming. But then the excitement of a horseriding lesson, the sheer delight of spotting a balloon (especially a hot air balloon) or a super silly giggle caused by simply hearing someone sneeze provides a beautiful reminder of the profound joy and courage these children radiate, despite their overwhelming challenges, and it provides the perfect encouragement and inspiration for facing your own. #samtheconqueror
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)

Wednesday, August 15, 2012

Smurfville under attack....

...serious attack...nasty BUG attack!


Err...no, that's a picture of me from last week...not the seriously nasty bug in question.

Last post I mentioned that Sam had been ill with a URTI.  Sam just seemed to be recovering, when I got sick last week and by Saturday Sam was all congested again, coughing by Sunday, gagging when eating by Monday morning and all croupy by Monday evening . I first tried to treat him naturally (because that usually works well?) as he'd just finished a course of Orelox but once we stumble across that croup-bark, we're heading for trouble.  So off to Dr B on Tuesday in the middle of a mini-storm with gale force winds and rain a-plenty.  Now usually all the mom-and-tot parking bays in front of Dr B's chambers are taken...all eight of them.  You would think eight mom-and-tot parking bays would be ample with there being only two paediatricians in the building.  But apparently not. What is, however, in ample supply is the number of people who have no reservation parking in these bays even though they are visiting the centre completely and utterly child-less.  The last time we had an appointment with Dr B I pulled into the parking area behind one other car, a white Jetta, just in time to see the driver pull into the very last M&T parking bay. I then watched the childless, 40-something-year-old woman trot fitly up the stairs to the entrance.  Had she at least shown some sign of physical hardship or disability I would have insisted she take the parking in any case. But such random acts of inconsideration usually means I (and several other folk I'm sure) land up having to park at the actual hospital itself and walk across to the completely separate building, awkwardly carrying 14kg's of smurfiness.  Here's a hint though to all those M&T snatching drivers...usually when a parent visits a paediatrician's rooms with...horror of horrors...an actual child on the arm...there's a really good chance the actual child is actually sick so having to walk from one building to the other is not always such a great idea.  Dare I even open that can of worms concerning disabled parking bay snatchers? Nope, we'll save that for another post. Yesterday, with the awful weather, I decided to leave for the paed's rooms super early so that I had time to wait outside the entrance for one of the M&T parking bays to become available...and fix the potential offender with a particularly scathing glare, if necessary.  Pulled into the parking area twenty-two minutes early and straight into an available parking bay, literally in front of the entrance.  Ouch!

After the usual luvin' Dr B bestows upon our little conqueror at the beginning of every consultation, he confirmed tracheitis (infection of the windpipe) and croup and sent us packing with another ten day course of Augmentyn (Double Ouch) and some cortisone (not enough Ouch's for that one).  Sam + cortisone make for a very aggro little smurf so the past couple of days have been fairly entertaining...first with Sam's relentless coughing when he eats...drinks...sleeps...breathes...and now with him being unconsoleably miserable.  And of course, excessive coughing coupled with a problematic little esophageal valve makes drinking of bottles and mealtimes just that little bit more exciting. The Academy award-winning performance was definitely Sam's total meltdown at 2am this morning.  He'd woken up crying, coughing and bunged up and with little lips ruby red and so dry they were shining, from breathing through his mouth. I tried to put a little coolled, boiled water in his mouth with a syringe (because of course Sam allows nothing passed his lips but Pediasure bottles) but in his half-asleep daze Sam must have thought I was trying to give him medicine and started crying hysterically...and carried on like that for a good hour with no amount of hugging and comforting being able to calm him down.  And of course at the end of it all, he eventually fell asleep with an even more bunged up nose and not a drop of water in his body.

Usually by Day 3 of the antibiotics and cortisone, there's a marked improvement so here's looking forward to tomorrow. I can't quite recall what sort of Winter Sam had last year (now if only I had some form of journal or electronic medium consisting of regular entries about the details of our lives, to which I could refer) but he wasn't doing too bad this year till this last month. Only four or so weeks to go and then hopefully we're heading towards some warmer weather. Oh my...and the daunting prospect of moving house which at this point looks like it's going to happen sooner than the end of October. Of course, with the passed two weeks revolving almost solely around illness there hasn't been much time to attend to all the details...and inevitable stress.  But perhaps that's a blessing in disguise.  There definitely has not been enough picture-taking and that is something I'll have to see to soon.

There has been one seemingly small but so hugely-significant conquest for us.  As mentioned previously, Sam's spatial awareness particularly with regards to his body, is simply apalling.  I had watched a video of one of Sam's RTS siblings, Brooklyn, enjoying a popsicle which she'd been holding herself and thought that perhaps if I persevered a little more with Sam, trying to get him to at least put an occasional food or treat in his own mouth, it might just improve the spatial awareness surrounding his face and, in turn and really the main aim, improve his fine motor planning with regards to handsigns meant to be displayed round the face. We have just recently discovered the Nestle baby treats on the market, specifically the little juicy chews which are incredibly soft, non-gag inducing and very Sam friendly, as well as their own mini-version of cheese curls. I first tried blatantly putting them in a bowl and offering them to Sam but of course he was not about to place that sensory-defensive little hand into a bowl of strange textures. Plan B was to put Sam's favourite dvd on, have him stand up at the tv unit and scatter the cheese curls randomly across the surface. At first I had to completely manipulate Sam's hand myself to pick the cheese curl up and place it in his mouth but after just a few guided attempts, he was quite confidently doing it himself.  Now he even manages to navigate the small little juicy treats, clasped firmly between his little angulated thumb and index finger, into his mouth.  He still won't pick the food/treats out of a bowl, but will happily take them when offered from my own hand or a flat, open surface like a food tray, etc.  Baby steps are just fine for now anyhow and although there are still some hopelessly out-of-place signs, there is also a definite improvement with signs like "crying" and "pig" now being displayed on Sam's forehead as opposed to on the side of his head. Like I said...baby steps :)

Thursday, August 2, 2012

News from Smurville

Poor neglected ol' blog.  Just haven't had much time to sit down and attend to posting...and I don't really fancy trying to rush through an entry, because then you land up with silly mistakes like typing "Smurville"! The very first word of my last blog post (and intentionally misspelt above).

As mentioned last post, our house is (now officially) sold so, up until last Friday, we were spending most evenings frantically viewing (and often re-viewing) the rather limited available houses for sale.  We have eventually submitted an offer on a place which has subsequently been accepted by the seller and are now awaiting mortgage bond approval from the bank.  The "new" house is much smaller than our current one particularly the garden but it is definitely more Sam-friendly being all on one level and compact enough for me to be able to know whereabout in the house Sam is at any given time. It's sure going to be interesting to see how Sam adjusts to a whole new home when it took him a seemingly-endless amount of time to simply adjust to a new cot last year. 

We've been battling for some time with Sam's sleeping at night as he spends most of the time thrashing around and twisting himself from side-to-side...sometimes for hours on end and often so aggressively that he lands up hurting himself.  Fairly convinced that it was sensory related as with many of Sam's issues, I tried giving him a last brushing and good ten minutes swinging time literally just before his bedtime (which often makes him quite sleepy) but it didn't seem to make much difference. Then to aggravate matters, Sam came down with an upper respiratory infection last week so we had a good couple of nights where sleeping for all three of us was limited to no more than three hours. Off we went to Sam's paed on Thursday.  We were discussing Sam's ever-present rash on his tummy for which we've tried almost every cream by now.  I asked howcome neither of Sam's anti-histamine's help with the rash, being his Zyrtec (allergies) and Cipla-Actin (appetite enhancer) which in turn got us to talking about the side-effects of the Cipla-Actin....being either sedatory effects or....HYPERACTIVITY!

*Light Bulb moment*

Mmmm...so giving Sam his Cipla-Actin at about 6pm with his supper might not be a super-smart idea? Apparently not! Dr B suggested I try giving it in the morning, which I did the next day but Sam was still just as restless as every other night, although with him being ill I hadn't held much hope. So on Saturday morning I thought "What the heck...let's veto the Cipla-Actin all together!" And would you believe, URTI or no URTI, Sam slept peacefully for the next few nights.  The only hiccup we had was yesterday evening when Sam threw a mighty tantrum when having to get out of the bath....which lead to some mighty screaming...which lead to some mighty vomiting! By the time Sam went to bed, that little tummy valve was still tantruming all on its own...so the remainder of his supper came out just as he fell asleep. I'm definitely going to persevere without the Cipla-Actin and just find other ways of keeping Sam's eating habits up as he has generally had an incredibly healthy appetite for a while now.  Even being sick last week didn't change his appetite, which is usually the first sign that something's up with him. 

Although I was a little dubious about keeping Sam on the Zithromax antiobiotic for a six-month period, I have to admit that it did definitely make quite a healthy difference taking into consideration how many viral infections, etc Sam was picking up prior to it. So after some discussion with Dr B we've decided to continue for another six months as opting to stop the antibiotic smack-bang in the middle of Winter might also not be too smart.

Otherwise all is pretty much the same with smurf.  No mindblowing accomplishments but no mindnumbing regressions either...which is quite okay for now.  Chris and I have had to deal with some rather disheartening realisations over the past couple of weeks.  On my side, I hadn't realised how sheltered I've become from having to share our family's challenges with "outsiders" as most of mine and Sam's social interaction revolves around Sam's therapists and doctors, my wonderfully supportive and accepting family and my very close-knit little circle of friends.  So, having to explain, some times several times over, to the same person why a particular house would not work for Sam because it was too cold, too warm, too bright, too damp, too close to a noisy road, too far from easy access to highways in case of emergencies and, the favourite, why we just couldn't manage that extra R100,000 or R200,000 because our little smurf is a pretty awesome but costly investment all on his own...did become slightly exhausting.  Chris shared a while ago that he sometimes doubts the probably good-intentioned sentiments of some, who believe they appreciate the challenges of having a differently-abled child but actually really don't...so it was quite a beneficial experience being reminded of that again.