Just 12 days to go until the very first World RTS Day !!!
I had so many idea's of what I wanted to do en lieu of my contribution to making this initiative a success....sending several articles to as many publications as possible, trying to get two or three radio stations on board, seeing if Derek Watts has an available segment the Sunday prior....you know, keeping it low-key but "out there" nevertheless.
So what happened? Well the problem was that each day, when Sam dropped off for his daytime nap (don't laugh) I was so overwhelmed with what to do with ALL that free time that I would work myself into a complete flat spin trying to prioritise what to do first....finish reading that, much needed, book sent to me months ago by my a good friend...put a hem in the two pairs of pants purchased about a month ago (Seriously? Is it really that impossible to entertain that some adult women really do have legs not much longer than 60cm?) that I still cannot wear (there's always Winter 2013, right?)...have breakfast, breathe, etc. But before you know it, my 3 minutes are up and Sam's awake.
So sadly, all I've managed so far is two really brief articles to local newspapers...and the one, I fear, might not really be the most appropriate platform as it appears to be a type of entertainment/out-and-about publication....Googling email addresses late at night and when in a hurry is NOT always the most intelligent idea.
At least, with exams finally over (and, hopefully, all the sulky study tears that go with it) and schools closing up tomorrow there'll be a little less pressure in the mornings...here's hoping I come up with a brilliant idea within the next 11 days....there's a first for everything after all.
Some brief Smurfy News (my 3 mins are almost up) : Sam's SPD is still keeping us on our toes. While tactile defensiveness continues to improve, his audio sensitivity rages on and now extends to the little hand processor I use in the evenings to puree Sam's food...and I thought me having to walk around with wet hair in Winter was a tough one (to avoid using the dreaded hairdryer), try having to puree foods such as chicken without an electrical appliance. Thank goodness for Woollies fresh baby foods - even though it means Sam's food bill alone is closing in on the rest of the entire household's.
With regards to therapies : we are still doing loads of supported walking with Sam to keep that right foot flat and hopefully also help him get over his fear of being on his feet. Some days are better than others, as with everything, when it looks like Sam almost wants to take a step on his own...but then there are days when he is so afraid that he basically walks at a 45ยบ angle from leaning back on me so much. Sam's signing is also all over the place with days when he is quite successful in accomplishing the more intricate actions required for some of the signs and then there are days when it seems as if he can't articulate a single correct sign. Something quite fascinating I've noticed is that, even though Sam can point to his mouth and nose when performing the actions to the song "Head Shoulders Knees and Toes", when using signs specified to areas of the face, he focuses them all on the side of his head, eg. the signs for pig, bottle, daddy, cry, etc. I asked Sam's ST about it this morning because I find the whole thing quite strange, especially as perhaps the obvious reason might have been hand-eye coordination issues but then he wouldn't be able to fairly accurately touch his mouth and nose (surely?). ST suggested I mention it at Sam's next OT session.
We have an appointment this afternoon with Sam's orthopaed (feet) and, aside from doing the usual routine examination, will more than likely confirm a date for Sam's foot surgery. We're continuing with our therapies next week, despite the school holidays but are taking a two week break from ST and OT and are hoping to spend a couple of days in Pearly Beach with Sam's granny :)
Sharing the journey of Sam the Conqueror, a medically-complex, differently-abled warrior whose precious spirit refuses to surrender to the limits imposed on him by his multiple diagnoses : Rubinstein-Taybi Syndrome, Cerebral Palsy (Periventricular Leukomalacia and Static Leukoencephalopathy) and Epilepsy.
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)
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)
Sam's progress sounds so familiar...if you put it on a graph, Natalie's progress with everything looks like a lot of up and down scribbles, but the trend is slowly "up"! I'm sure there's a mathematics term for that, but I don't know what it is: trending up? Just when I think she will never master something, she does. I keep telling myself that I need to remember that this is how everything is, but it's hard to remember in the desperate valleys. Hugs to you and prayers for persistence...that's what always worked with Natalie. Also, Natalie would have "holes" in her skills similar to what you describe with Sam's signing. For instance last year she could read and sign "red" and give you a red crayon if you asked for it, but if you point to a red crayon and ask her what color it was, she couldn't tell you. We've found that in a lot of other areas: holes that seem like she should have learned something because it's related to a skill she does well Except she hasn't. So just to encourage you that he'll get it one day!
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