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, February 17, 2011

The kinda surgery I like...

Mmm...okay, that's not entirely correct. More like the kind of "notice" I like about an upcoming surgery. So, we were off to Dr dT (orthopaed) today for a general follow-up and to see what's cutting with that little foot of Sam's. He gave Sam a thorough examination first, as usual, and Smurf was just all smiles and charm (which was quite surprising as, up till then, he'd had a sleepless day and managed to fall asleep literally five minutes before we arrived at the hospital). Neck, back and kneecaps all look great with absolutely NO sign of kneecap dislocation (common in our RTS sweeties) and, which he feels, would have started presenting problems now already if Sam was going to suffer with issues relating to his knees. He had a look at Sam's thumbs and feels that, as Dr C has already mentioned, Sam will definitely need another op to further rectify those angulated thumbs. We are seeing Dr C (orthopaed - hands) within the next few days and he will more than likely concur.

Anyway, onto the foot...Dr dT says that Sam has a Hallux Varus on the left foot which does present in a percentage of the RTS kids. He does not feel that the foot itself is deformed and that, should the foot not be so turned inwards, the "bump" on the outside would not be apparent. The Hallux Varus is usually rectified by a surgical procedure called an Osteotomy (not dissimilar to the Delta Phallynx surgeries Sam had on his thumbs). The procedure, however, is usually only done at 3 years of age....so that's an awesome fifteen month's notice!! (BTW - Sam was 21 months on Tuesday). Sure, I'll probably be a little less enthusiastic closer to the time but after the TSC surgery, I feel we can tackle anything. Okay....maybe except for vomiting. In addition to Sam's rather scary-looking hyperextensible elbow joints, he also has a degree of Ligamentous Laxity which Dr dT says can sometimes cause elbow dislocations but gave Sam's a good feel and said they appear fine at this point. He also watched Sam walk a bit and says that he's using his foot just fine and, if anything, the foot might cause the slightest delay with walking but he doesn't foresee it effecting Sam's walking at all. We see Dr dT again in July for more x-rays of his feet and hips (Sam's, not Dr dT's).

On to physio, Sam had an *awesome* physio session yesterday. There were no tears, no screams and (monstrous YAY!) no throwing up. Sam and I have religiously being doing his stretches at least once or twice every day and Heidi said it showed. Sam spent a great deal of time on his knees and Heidi went through the exercise of standing up from a kneeling position...that was just yesterday. This morning I had him on his knees in the same position and very next thing, in the blink of an eye, he had pulled himself up into a standing position!!! I put him back onto his knees and next thing he was standing again...I even tried to take a pic, but he's so quick to get up that I missed every time. Then later this afternoon, he was sitting on the floor with his back up against the couch (sofa) and calmly turned around to pull himself up into a standing position...Oh My, where has my baby gone? So much progress in such a little time, it almost makes me afraid that, after so much bliss, we're going to be dealt a whopper of a blow to bring us back to earth. Well, might as well enjoy it while it lasts then... :)

One issue that is going nowhere fast is, of course, the throwing up. We had a completely vomit-free day yesterday, but made up for by two today. And, yes, I am still doing battle with the whole Pediasure/Nestargel saga. I keep deciding to give up and just revert back to the S26 as I have weighed Sam every day for the past couple of days and he's just stagnating at 9.0kg. But, Smurf having the sweet-tooth that he has, do you think he's prepared to drink the plain ol' S26 after delicious chocolate and vanilla flavoured Pediasure? No way! I tried to weigh him again this morning but I think our scale is on the blink for sure because, after approximately twenty-something attempts, Sam weighed anything between 8.9 - 10.5Kg's (such a small variance, you know). And trying to get Sam to stand still for the 4 seconds it takes to display the weight is another task altogether but eventually about fifteen of the twenty attempts settled on 9.3kg's, so I am going with this one for now. Which then also means that the Pediasure is probably making a bit of a difference which in turn meant I had to give it another go. So tonight I first let the Nestargel cool (which I don't usually do because it starts forming a "film" on the top as soon as it cools down) before adding the Pediasure. I literally just finished mixing it two minutes ago and it looks like it might be the solution. Here's holding thumbs!

Here's an interesting fact : To date I have so far spent approximately 21,600 hours making Nestargel & Formula! Phew! I suddenly feel exhausted....but first, some pics :)

 Brampies is convinced that Sam is going to either start crawling or walking any day now and so spends a decent amount of time each day doing therapy-type play with Sam. Gotta love him!


 This is that precious moment that I missed snapping, but it was from this position that Sam managed to stand up. I'm on a mission to capture the whole thing!

And a random shot of my most scrumptious cutie pie!
 

2 comments:

  1. Amazing news....all good and the fact that he is pulling himself up shows improved upper body strength...so it will be either crawling or walking soon. Well done Sam and yes have to just love Grandpa too he is truly great. Just imagine what you could have done with all those hours like laze around the pool or get your hair done or maybe relaxed in a bubble bath. Well done to you, you are truly an inspiration!

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  2. Aww so sweet. What a great Grandpa.. Great job Sam..

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