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)

Friday, August 19, 2011

Happy Days :)

Perhaps "Happy Days" is a tad too extreme in the midst of Sam's slow recovery and the ever increasing SID (which resulted in Sam's much anticipated "first" bath in seven days being reduced to little more than a clingy, whiney, petrified ten minutes). Still, the Happy Dance is most certainly what I felt like doing when leaving the hospital yesterday morning after our urology consultation.

The first ten minutes started off a little shakey when Sam started crying as the dressings were being taken off (can hardly blame him though, the skin under the dressings had turned a rather angry red) and for a split-second it looked like we'd be doing some v-word cleaning up right there and then. But my super-brave little smurf pulled it together and before you could say "vomit be gone" it was all over. Even though it was already the second time I've seen the wounds, the length of each still startled me initially and of course the right side, having been subjected to a far more aggressive surgery, is still relatively swollen and bulgey.

So, the good news...is that we can wait up to as long as eighteen months to two years before we need to open up the right side to go remedy the halfway-relocated testicle. And it gets even better yet - as the left testicle is securely embedded where it's meant to be and as only one testicle is really necessary to ensure adequate hormone production when Sam hits puberty, Dr J advised that it would be quite okay for us to simply remove the right testicle when the time comes as opposed to having to put Sam through this entire ordeal again. I was *SO* relieved to hear that, that I could have skywritten "YAY" with my immensely long sigh of relief  :)

We have an appointment with Sam's hand surgeon next month to make sure that his thumbs have not started angulating again and also to figure out what's going on with five of the remaining eight fingers which fingers are currently unable to be straightened/flattened. At this point it appears as though it might be a problem with his tendons being too taut, but we'll confirm this then as well as to what intervention is required. Should surgical intervention be the only option (which is how it looks right now) I am most definitely going to request that we prolong it as much as possible but trying to avoid permanent damage to the fingers is obviously also vital. It would be so amazing if it turns out that we could get away with the next twelve to eighteen months (at the very least) being completely surgery-free, after which we could perhaps consider doing the fingers and remaining teste together. After yesterday's surprisingly optimistic appointment though I can just see us leaving Dr C's rooms next month with a completely surgery-free remedy for Sam's little fingers. Here's praying :)

The only slightly downside to yesterday's events was that Sam's basic allergy tests came back negative for food products and external allergens but with raised igE levels (immunoglobulin E). For this specific purpose, a more detailed blood test was requested but unfortunately not enough blood was drawn during surgery to carry out the further tests so once Sam is feeling a little less traumatised, we will have to see about drawing some more blood. Sounds fairly simple, right? Well, if you'd been in that ward on Friday watching the pathologists desperately trying to find one of Sam's extremely elusive veins you would understand how much of a challenge this could turn out to be :)  For now, we're just putting this thought out of our minds and taking it day-by-day...in between trying to sidestep Sam's still ongoing target practice, with my face being the bull's eye! *Oh Happy Days....Oh Happy Days*

2 comments:

  1. You are doing an amazing job with Sam, he has the best mother in the world. Thank you xox

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  2. Now that is what you call one very wonderful husband and yes I agree Sam is a lucky little chap to have such an amazing Mum

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