SAM...MORE THAN A CONQUEROR: December 2011

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)

Monday, December 19, 2011

Elvis has entered the building....and the family!

Nah! Just kidding!

So Pasty Smurf seems to be, albeit slowly, on the mend. He is still coughing and late this afternoon his cough was sounding very croup-like again. But thank goodness we have had no v-wording for two solid days now (and, No, I am not sending that out into the Universe as an invitation). I am so disappointed that, with all the chaos at last week's paed appointment when Dr B weighed Sam, I didn't even ask what his weight is now. I do remember that his height is now 84cm which is not too shabby at all because that's like a 3cm growth in about four/five months. Also, after showing Dr B how severely Sam's sensory defensiveness is at the moment, Dr B did a delicate examination of where he thinks Sam's right teste is sitting and, although not 100% sure but pretty darn close, he thought he located it sitting much further out of Sam's groin area than we anticipated - almost kind of under Sam's hip bone. Anyway, Dr B is quite convinced that that little teste could definitely be causing Sam some discomfort, at best, if not pain with certain movements and positions. So, boy are we counting down anxiously until the 20th January to, hopefully, see the removal of the teste having a profound effect on Sam's SID.

On Sunday afternoon Sam seemed to be feeling a little better so we ventured out into the big, wide world...or more specifically down to Aunty Cammy's to meet the new addition to hers and Uncle D's family. So folks, meet Elvis....

...who loved playing with Sam's stacking rings almost as much as Sam does,

and had Sam beside himself with excitement.

Between Sam and Elvis, they kept Uncle D busy fishing the stacking rings out from under the couch.

Random pic of Sam and Dad

And please do note Dad's snazzy new haircut...cut and styled by moi! I'm thinking of opening my own little hair salon, Salon de Smurf...just as long as all the customers are only wanting military-style do's. Although I'm quite sure I could manage quite well with an emo-style cut (not even sure if there's even any cutting involved there) and have extensive experience with the haircutting of squirmey-wormey-type little people. I've asked Meg several times if I can't experiment a little on her hair too, but would you believe she's just simply refusing. Tsk Tsk.

Saturday, December 17, 2011

Pasty Smurf

We are on Day 4 of Sam’s virus-croup-combo, but it feels more like Day 40. Sam is kind of on a vomit/fever/coughing roller coaster. He goes through stages when it appears as though he might be on the mend, but then next minute he’s losing his breath, hitting the 38 temps and vomiting again. It’s just a LITTLE frustrating! The roller coaster did kind of end on a “high” tonight with Sam going down with much less drama than the past few evenings so let’s hope it’s a good sign. I have heard that there is quite a potent virus doing the rounds in Cape Town which has so badly affected children as old as fourteen, that they’ve had to be hospitalized. Doesn’t really set the tone for a great festive season having your child in hospital, so here’s hoping the virus makes itself scarce!

At Sam’s doc appointment on 1 December he worked himself up into such a state when the doc examined him that he landed up vomiting all over both him and I (Sam, that is, not the doc – although he too was starting to look a little green towards the end of the consult). So I decided to go prepared at Wednesday’s appointment with Sam’s paed, even though “going complete” meant having to lug along two separate bags : both Sam’s normal “baby” bag (which is already jam-packed) and then a “pull-in-case-of-emergency” bag consisting of a great big towel (which has proven excellent at vomit catching) and a complete change of clothes. And thank goodness I did. The actual examination was remarkably uneventful, with Sam almost falling asleep at one point. At the end of the consult, I had just finished telling Dr B about how badly Sam has regressed with regards to his sensory issues, when he decided to weigh Sam (completely unawares, of course, of how bad it really is at the moment)…which involved Sam sitting on the baby scale…which (with sitting anywhere being a serious No-No at the moment) then involved Sam freaking out and vomiting everywhere!

Dr B opted to send us home anyway, with strict instructions to get Sam keeping some fluids in by the end of the day or, failing which, a hospital stay and IV were inevitable. I pointed out that Sam’s original surgery date had been Dec 14th and that he was probably determined to stick to the original plan of being in hospital then (he doesn’t take well to change, our Sam) so Dr B suggested I make a detour through the paediatric ward on the way out just to satisfy Sam’s need to be in hospital! I was like, “Errr….let me think about that one….of course not!!”

A rather pasty, bleak little smurf :(

Well, we are eight sleeps away from Christmas Day and we have still not done a scrap of Christmas shopping…although having a vomiting smurf accompany us could prove invaluable in lengthy queues! If he doesn’t improve quite drastically over the next couple of days though, I’m afraid all of our pressies are going to be in the form of a stack of I.O.U.’s….imagine?

Wednesday, December 14, 2011

Adrian

Yesterday morning, we took a little drive, to go wish a friend (well actually Sam's friend, Adrian) Merry Christmas.

This is Adrian :

Adrian sells newspapers at an extremely busy intersection en route home from dropping Meghan at school and every schoolday morning, without fail, the second our car stops Adrian rushes up to the window and spends the next two to three light changes entertaining Sam by dancing, signing, clapping hands...you name it, he does it...as long as it gets a smile and some handclapping out of Sam. I can count on my one hand the number of days Adrian has not been at work, he's there whether its blazing hot or pouring with rain...and it's about the only part of our car journey during which Samuel does not moan and cry. Over the weekend we received a truly precious gift from a certain Knight and his Princess with an ever more precious message. Seeing as we seem to have been the object of many generous gestures lately, we wished to share our blessings with someone who is always smiling and friendly and keen to make others happy, so we went to share our gift with Adrian and thank him for the cherished contribution he makes to Sam's life. We'd be quite devastated if we had to face that intersection without Adrian as I am sure several other motorists would feel as Adrian's antics usually draw smiles from others as well (although there are the occasional frowns and disapproving looks).

Friday, December 2, 2011

No more faking, Sam!

We are still kind of swept up in the excitement and thankfulness of the blessings Sam received earlier this week. I say "blessingS" because not only did we receive the super generous sponsorship from Lancewood but a little later on Tuesday received yet another, equally generous, donation from an amazing family in their personal capacity, if not more appreciated because of that. Stan & Jodi - your compassion and delight in wanting to help Sam be the best Sam he can be, is awesome and truly inspiring. Our true thankfulness goes far beyond what any words can express. xxx

Our little conqueror smurf is completely oblivious to what amazing events have being taking place all around him this week, except maybe as to why Mom was bawling all the way to OT after receiving a certain phone call. But who can blame him as, after a particularly fussy night on Tuesday ("fussy" meaning that instead of thrashing and rolling around every 20-30 minutes, he was thrashing and rolling around every 2-3 minutes) and a sudden refusal to drink or eat on Wednesday afternoon, our GP confirmed yesterday morning that Sam yet again has a red, bulging ear drum. (I am NOT even going to go there!) So, he's on a five day course of Orelox, which of course tastes simply smashing, until his ENT appointment on Tuesday, which ENT appoinment will undoubtedly lead to grommets...soon! My initial "plan" was to try and stretch the grommets procedure until the 14th December, for which his surgery to take care of that little right testicle was originally scheduled, in order to avoid two anaesthetics so close together. But there goes that plan out the window with the testicle surgery now been moved to Jan. Now we're still facing two anaesthetics so close to each other. *sigh*

Perhaps Sam HAS picked up on all the good things happening around him, as he has certainly become more verbal lately...as if to say "See, I'm doing my part too!". At last week's speech session, Sam thoroughly enjoyed some mirror-time, so I found a loose mirror we had lying around (Uhhmmm...if swiping it out of Meghan's room could be considered loose) and have placed it in Sam's little play area and he spends ages on his knees in front of it doing all sorts of things like different assortments of hand-clapping, some drumsticking on it (there just had to be tapping/knocking somewhere) and even some self-awareness exploration like touching his own face, then his head, then his knees...he even pulled his own hair yesterday! (Told you those little fingers have a mind of their own). It's probably been one of the most worthwhile additions to his toy collection - who woulda figured?

We've yet to receive any news from SARS as to whether they do indeed agree that RTS is an actual disability, making me wonder if perhaps they've decided otherwise. In light of this I wondered to myself if perhaps we are not the ignorant party, so sat Sam down last night and decided it was time to get down to the crux of the matter. I said, "Sam, apparently SARS is under the impression that you are faking a disability. So, scadaddle your little rear-end off this bed, march down the passage to go ask your dad to make you a sarmie while I quickly get rid of all the accessories, meds, books and other tools we've accumulated in lieu of your supposed special needs."

Anyway, I've gotta run...we're off to SARS quickly! I'm going to ask them to take a quick look in Sam's ears for me...what with them being such profound medical experts I am sure they can tell me whether there's any improvement!

In closing, some pics!