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)

Tuesday, October 6, 2009

Rollercoastering

People often refer to challenging times as being on an emotional rollercoaster....well if challenging times were rollercoasters, we just did a couple of rounds on the Kingda Ka (one of, if not the, highest roller coaster in the world). So, it all started on the 25th September....Sam went for his Rotovirus and Infra-6 vaccinations. We were told that he would probably experience a little bit of a fever, but I was also warned that the later a Rotovirus vaccine is administered the more severe the side-affects are....so, taking into account that Sam was 20 weeks at the time when he should have had it at six weeks.....we braced ourselves. (We had to wait until his drinking improved before he could have it). Sure enough at 11pm on Friday night Sam's temp went up and he was generally crabby and miserable. The following Saturday he battled even more than usual to drink and also vomitted so we started him on some Hydrol. By Tuesday he was still not drinking and was extremely phlegmy...he was also coughing and gagging alot. So, after some advice, I changed his formula from Infacare Reflux to Nan HA but Mr de Beer did not like the taste of the Nan AT ALL....and still drank as little as possible. In the space of 24 hours, from Friday to Saturday , Samuel drank a total of 110 mls...so we decided to take him to the GP, who could not find anything wrong with him. Saturday afternoon, after throwing up again, we took him down to the ER as, thank goodness, his paediatrician was on call. After a scream-filled examination and threats of having to admit him, Sam's paed told us that Sam has a viral infection. He also felt that I changed his formula unnecessarily and thought I should change it back to the Infacare...much to poor Chris' dismay - Chris has being buying Sam's formula in bulk for the month, which he'd done on the Friday before...so when I changed it to the Nan HA off Chris went to Pick 'n Pay, boxes of formula and slip in hand to change the Infacare. Then, after Saturday, off we went again, Nan HA and slip in hand...to change back to the Infacare. We must look like a couple of first time, blundering parents I am sure...and to be honest, that's how I feel. I really thought, despite all the advice about the various challenges we were going to face, that surely after almost five months I would have felt a little more confident that, if nothing else, at least I was feeding him right. But every time we think we've found a way to overcome a problem area, our success is shortlived. Anyway, other than that, Sam has had two physio sessions already, with yesterday's being the most recent...and he screamed blue murder throughout the ENTIRE session. But, a small victory, his therapist can already feel that the band in his left foot is a little looser, which is great as it means we might be able to avoid the plasters. But Sam still has LOADS of work to do and he is not the most willing little patient let me tell you. Although, in his defence, he is not well which might have contributed to his complete horror at having to roll on a ball (which stood up like a ten-storey building next to him), lie on his stomach (boy does he DETEST this), have his hips rolled up to his chest (no, his hips DON'T lie)...the only time he calmed down was after Cathy swung him back and forth for a while on his tummy, but even that didn't last long. So the session finally ended up with him crying so hysterically that he threw up on her. Needless to say, next Monday's looming session is already giving me anxiety attacks. Where we are today - Sam is drinking much better - yah! Still not great, taking into account that Sam's seven-week-old friend, Janke, drinks 150 mls bottles at a time compared to his 85 mls...but maybe that's why he only weighs 3.3 kgs compared to her 4kg+...but I am so relieved when he finishes his 85 mls that he could have just polished off a whole litre of milk. He is also losing his hair - yikes! That's like his trademark and gets so much attention when we take him out anywhere. I cannot imagine what he is going to look like bald (is he too young for hair transplants?) Hopefully his new hair grows quickly - one good thing is being able to wash that baby shampoo off properly because, quite frankly, I don't think it was intended for such a thick mop of baby hair. On Thursday we are off to his paed but before that - it is big brother Luke's birthday tomorrow and we are going to venture out for a bite to eat...should prove entertaining, if nothing else. I am just surprised that none of our neighbours have called the police or child welfare on me yet because you would think I was abusing him 99% of the time with the way he screams...but hey, at least we know his lungs are healthy :-) And then, along with Friday comes....OPERATION DUMMY!!!! Samuel refuses to suck a dummy. We have tried at least five or six different dummies, but he either spits it out or gags. I am determined to find a dummy that he will suck on this weekend, if its the last thing I do (okay - maybe not the last, but still.....). It's basically the same process we've gone through with his bottles and most recently, his formula. Never mind that by now we can open up our own secondhand baby shop with all the items we've bought that just doesn't work for him. So, stay tuned to find out how the eating out, paed's visit and dummy hunt went.

4 comments:

  1. What a rough week you've had! It is easier to be second-time parents when you have a kid with special needs, because at least you know a little what "normal" should look like...but it's still very hard. And I agree we all end up feeling like first-timers again! Natalie got into the therapy routine with toys that had lights and music...I'm sure you have those, but just want to suggest you use those to try to distract Sam while he's on the ball, etc.

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  2. hey chris and nicky come down for a visit and tehen we,ll all help babysit the little angel and you can go for a nice long walk on the beach.thinking of you always.love

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  3. Big Hug to you all, esp Sam. You are enduring lots of things. He is enduring a lot!

    Have you tried the cherry dummy with Samuel - they are tiny - smaller than honey dummies. I think we got them at Baby Boom. Also tried loads of dummies with Matt and that is the only one he liked.

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  4. Thanks for all your encouraging words everyone...believe it or not, we have tried the cherry dummies...he is just not interested.

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