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, April 8, 2011

Good Ol' Smurf Mentality

So, thankfully, it appears as though Sam’s blog is not somehow jinxing his health. Phew! What a relief that is. (Of course I was being serious when I said that last week…LOL). With only an extremely minor throw up on Saturday, we were all good to go for Sunday’s trip. Or so we thought. No, nothing ailed us from Sam’s side however, our usual three hour & forty-five mins trip was turned into a five hour long trip, both ways. We left at about midday on Sunday afternoon thinking that the roads would be relatively quiet as all the holiday goers would surely have left on the Friday after school and not many people choose to travel on a Sunday afternoon. Our intentions probably would have paid off except for the major roadworks taking place along the way which resulted in over an hour’s delay. Sam was beside himself and got to the point where he just couldn’t take it anymore and started biting me in the face and pulling my hair from frustration. (This has become quite a habit of his when dealing with any kind of “overload” in a situation.)


Effectively, out of the forty-eight hours we were “gone”, we spent ten hours travelling and, say, sixteen hours sleeping which left us with a measly twenty-two hours actual visiting time. Not one of our most intelligent escapades ever if you look at it from that point of view, but at least we did get some quality time in with Chris’ family and, as always, Meg and Chrisna played up a storm.

Sam only had one v-word episode while we were away and that was on Sunday night, mostly due to still being stressed about the long car trip which found us arriving just about his supper time which then, of course, sent his normal evening routine hurtling to the wind and left him completely unsettled, on top of not having much time to get used to his new surroundings before bedtime. But for once it was Chris who got v-worded on which was a small, yet much appreciated, consolation…well for me anyway.

Sam had his second OT session yesterday morning which couldn’t have come soon enough as his biting has become so out of control that he actually had me in tears on Tuesday afternoon. At first I thought it was just his version of a kiss, because he seemed to do it in an almost affectionate manner but, as his OT confirmed this morning, it is definitely related to the SID as it happens predominantly when he is in some form of sensory overload, whether it be negative or even positive, like when he laughs so much that he actually starts crying. Anyway, the session went extremely well with very little resistance from Sam. He loved all the various types of swinging and even tolerated the new types of brushing and deep pressure input. Sam was helpful enough to go into one of his biting “fits” right there in front of the OT, ripping out a large handful of my hair together with the biting, which enabled her to see exactly what I was referring to. She gave me a fairly thick piece of tubing to try and keep on me as often as possible so that when it looks like Sam’s about to bite, I can quickly place it in his mouth and get him to seek his sensory input through the tubing rather. We are still carrying on with the sensory brushing which Sam still tolerates quite well most of the time, but it’s the deep pressure exercises afterwards he resists so aggressively. I was actually pretty much convinced that I’ve been doing the deep pressure input incorrectly because Sam literally fights me on it, but when OT went through the exercise this morning he tried to fight her off as well, which did put my mind at ease….well, a little at least!

Sam’s crawling is coming along beautifully, especially over the past couple of days. Dare I say he might be crawling properly by his 2nd birthday (in just over a month’s time)? He has even ventured out onto the normal floors now, as opposed to only managing to crawl on the bed or a duvet laid out on the floor. It is sort of weird to be looking forward to crawling by the second birthday whereas usually you’re entertaining the idea of your child possibly WALKING by their FIRST birthday. I really appreciate the tact and compassion with which Sam’s OT has handled this particular subject as, when doing his assessment and coming to the developmental section, she did not feel it necessary for us to have to pinpoint exactly to what extent he is delayed. Along with the forms which she handed me to complete was the development assessment page (I didn't have to fill this in either - thank goodness) but from the information on there it would appear that Sam is only on the developmental level of a seven/eight month old baby…perhaps a nine month old at best. While I have no delusional perception about Sam’s development, somehow hearing a “professional” person spell it out for you just seems to sharpen the reality, so I am grateful for her sensitivity.

We are still doing the no-Nestargel formula but I am not sure for how long this can stay a solution as there is still definitely a degree of reflux going on, which is especially obvious at night with the OSA and stuffy/congested nose again. Wow, one just cannot seem to win! Because of Sam’s inability to co-ordinate both hands for such a long time, he was never able to hold his bottle himself, which was not necessarily a bad thing as we had to use teats which were designed for thicker liquids and which had three different flows on them, of which Sam used the smallest due to his swallowing problems. Had he actually learnt to hold his bottle himself, just one slight twist of his hand would have had him sucking on the widest flow so I was quite happy to be holding the bottle for him. Now that he is drinking normal consistency formula there is no reason why he cannot hold his bottle himself…well, other than the fact that he refuses!!! Chris tried to get him to hold it last night and although he kept his hands on the bottle while Chris in turn held Sam’s hands in place, the moment Chris removed his own hands Sam just let the bottle drop. Of course there’s no way we can blame poor little Smurf…having someone else cradle him and hold his bottle for him is how he’s been doing it for the last twenty-three months and he obviously just doesn’t see any good reason to change that….can’t say I disagree with that ol’ Smurf mentality.

P.S. This is my first official blog from my new Acer Notebook so that in future, regardless of whether we are away for a few days or Sam is in hospital or whatever, there won't be such long gaps between posts. Thanks Love - Love you xox

3 comments:

  1. Hoping that this post is the start of a more positive season of health for Smurf. Exciting news about the crawling - you go Sam.

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  2. I'm so glad you have an OT helping...I know what a difference it makes to have an encouraging professional who understands your child and understands your needs as well. Yeah Sam!

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