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)

Thursday, October 31, 2013

Tumblemania, Relocations....and poop

So at our paed appointment last Thursday we discovered that Sam's sole surviving little testicle has, in fact, checked out of Motel Scrotum and travelled up North :( Doc Paed does not seem all that concerned about it, hopefully it'll come back "home" on it's own...
 
Two things Doc Paed did seem concerned about were Sam's knees and Sam's rather very full-of-poop gut. Little pus-filled pimples have formed on Sam's knees from all of his knee-walking and with his completely refusing to use his walker lately, Sam is spending more and more time walking on his knees which causes the little pimples to break into little sores.  Doc Paed advised that the little open sores could become infected and the infection could then travel into Sam's joints. I tried sewing felt-filled patches onto his pants but a) the patches move too much as he crawls and flaps when self-stimming and b) it looks like its the actual friction between his skin and the fabric (regardless of how thick the fabric is) which is causing the problem.  So next solution...keeping Sam off his knees.  The first couple of days went relatively okay but Sam has become really frustrated at not being able to "walk"around as he's used to.  Also, for physiotherapy reasons and his forever tightening muscles and tendons, limiting his mobility is not the ideal solution.
 
So I decided to try modify Sam's walker, hoping that he would once again feel safe enough to spend some time in it...
 

 
 
...and it seems to have done the trick, to a degree. Despite Sam looking like he has one epic wedgey, the bit of cloth he can feel around him definitely makes him feel alot more secure and he's spent a fair amount of time in the walker over the past few days. Yesterday he and I even played a little walker soccer! From a physiotherapy point of view, providing Sam with a "crutch" is perhaps not the most suitable way of getting him to walk. But from a SPD point of view, sadly, as we get closer and closer to Sam's 5th birthday and with no really fabulous improvements with most of his anxieties and fears I think we're moving further and further away from Sam walking independantly one day.  So if having a little bit of security in his walker helps, so be it.  I'll give the fabric a rethink to find something more durable but without being uncomfortable. 
 
As for the poop - when Doc Paed examined Sam on Thursday, Sam instantly flinched when he touched Sam's tummy. An x-ray revealed that Sam's gut was absolutely filled to the...uuhhmm, brim (?)...with poop. So we've more than doubled his Movicol intake and used suppositories for two days, which is about as many as we'll get to use as that little butt instantly clinches shut now. Sam seemed to be doing quite well with more solid foods lately, but obviously his digestive system needs to catch up with his sensory self....so we're back to very pureed foods. 
 
A long while ago Doc Paed prescribed a med called Neurontin for Sam, to help with his increasingly-forceful body bashing at night. I was a little sceptical about the Neurontin as when googling it, I read that it was initially intended to treat epilipsy.  But as Sam's body bashing became more distressful and his left hip started "clicking" again, which it hasn't done for some time I decided to give the Neurontin a try. 
 
Oh my hat!
 
The kid didn't move....I didn't sleep! I lay awake making sure he was breathing, occasionally turning him so that his body didn't cramp. #eyeroll  But on the 3rd morning, Sam woke up with the mother of all moods and Morning 4 only got worse.  Mentioned this to Doc Paed who quickly came up with an alternative...Clonidine. 
 
Oh my hat!
 
While the Neurontin helped Sam stay asleep and free from body bashing throughout the night, it didn't help him fall asleep and this is when Sam does his most damaging body bashing. It has been taking Sam as long as two to two-and-a-half hours to fall asleep sometimes.  We started the Clonidine on Monday evening and Sam has fallen asleep within 20 minutes every night so far.  Night 4 is usually the defining night, so let's see what happens tonight. 
 
Random Smurfy News : About a month ago, a friend gave Sam three *Mr Tumble : Something Special* dvd's.  Have you seen these? I can't say I found Justin Fletcher particularly entertaining in Jollywobbles and Justin's House...perhaps because I am just a teeny bit over the age group of the targeted audience? But in these particular movies, Justin works together with some pretty adorable children with special needs to create a fun way of learning, using Makaton throughout the movies. Sam is besotted.  He watches absolutely nothing else...no Teletubbies, no Barney, no Tweenies...just Mr Tumble, for which he has formulated his own "sign' and has picked up many of the proper Makaton signs.  I'm almost a little disappointed that I hadn't started Sam with Makaton right from the beginning as he seems to be grasping these signs far more easily.
 
 
 

 Random Smurfy pic :

Thursday, October 24, 2013

We're off on a hunting expedition...

...now why does that sound so familiar?

This particular hunting expedition takes place at Sam's paed's office and, very hopefully, will bless us with an awesome treasure...which treasure would be in the way of some sort of explanation as to why our little smurfy dude is still travelling along that road called regression. I do so hate that road...bleh :(

We're still stuck in that place where walking with the walker is an absolute no-no, even walking with me holding him involves loads of frights and surprisingly-potent pinches on whichever part of my body happens to be within reach (usually that tender spot at the back of the arm), bath time has again become a series of suddenly crouching forward in fear of the awful...uuhhmmm...nothingness behind Sam in the bath (!). Super clingy is a major understatement as Sam brings new meaning to the term "separation anxiety" which means lucky me (whoop whoop) gets to be in bed before 8pm EVERY. NIGHT. We're doing some great v-wording again too, mostly at night.

Usually this type of regression tails on the back of some sort of pain, usually from a surgery. But we've not had a serious surgery since the last testicle repair.  Which is my real concern at the moment...Sam's last remaining little testicle has gone M.I.A. I am hoping that perhaps it has just been in hibernation during the Winter and has not yet realised that (finally) Spring has sprung.  I have tried quite a few times to...uuhhmm...locate it, but can't feel it anywhere.  I am hoping that Doc Paed will perform a more confident examination and find it hiding away in a little corner somewhere because, honestly, another surgical repair for this particular issue will just not be a ball of fun :D

A quick glimpse into the last few weeks via some pics...

Sam had a pretty mean throat infection during the school holidays which inevitably landed up in some croup, which inevitably landed up in some v-wording
 

Not even going to delve into the disaster that is sleep (or lack thereof) but apparently pretending to be asleep is quite comical to Sam
 

Sick little Smurf
 

Venturing onto (and apparently quite liking) the big boy swing at Aunty Christa's
 

Embracing his paternal instincts
 

 

The warmer weather meant being able to get outside a little more, although the nasty South-Easter is trying bitterly to keep us inside. Boo!
 

How we spend bathtime.
 

iPadding in the dark when I'm meant to be sleeping. Tsk Tsk.