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)

Monday, February 7, 2011

It had to happen....AGAIN!!

As I've mentioned over the past couple of posts, Sam's reflux is really challenging us at the moment...I can't remember when last we've gone just ONE day without a full-on projectile vomitting episode. There is only ever one of two triggers - his gag reflex or when he cries and reaches that inconsolable point of no return and the amount of time which has passed since his last bottle/meal makes absolutely no difference to the extent of the throw-up. It is SOOOOOO frustrating.

I thought that, after Sam's very public reflux episode last year in a coffee shop one Sunday morning (see post "The most painful snack ever!" 22 Oct 2010), there could not possibly be a more inconvenient and awkward place to have to deal with vomit. I was wrong! I can probably count on my one hand the number of "family outings" we've attempted with Sam, for two main reasons : he doesn't cope well with unfamiliar surroundings and for fear of a reflux episode in public. But yesterday afternoon we just REALLY felt like doing something as normal as a simple Sunday drive, perhaps stopping along the way for a cooldrink or something. We first Uuuhhhmmm'd and Aaahhhdd'd about it (or rather, I did) for a while and settled on a short, hour's drive past the strawberry farms. Unfortunately Sam was due for a bottle soon, so I took it with, with the intention of giving it to him when we stopped - which I did. We had a bit of a shaky start to our "trip" with Sam hugging the life out of himself in fear, strapped into his old carseat in the back of Chris' car - I've never seen a child so sensitive to his surroundings. After that, all seemed to be going well, Sam even fell asleep on the way back after his bottle which I was really excited about because he doesn't usually fall asleep in the car. When Sam woke up, everyone was busy munching on some or other snack, so I gave him LITERALLY a crumb from a Tinkie cake and just as I was thinking "Yah, this is going really well - something we can do more often", he gagged, coughed and vomitted up his entire bottle all over me, him and basically every inch of the passenger side of the car...right down and into the seat belt clips. The best part? We still had another twenty-five minutes to go until we reached home! It was quite something to experience, nothing like soaking in a Nestargel and Pediasure bath. And, with it being that lovely thickened formula, it didn't kind of just drip off us (sorry for the graphics) but just hung onto our skin, which made for lots of fun trying to keep Samuel from playing in it.

By 8:00pm this evening we were officially about to hang out the "NO VOMIT TODAY!" banner on the front of the house. But alas, having forgotten to touch wood and all that, fifteen minutes later myself, Sam and the lounge carpet were again drenched in it. Aaaarrrgggghhhhh! I have never taken so many showers in all my life, on Saturday I showered twice within one and a half hours and usually just take Sam in with me because it's easier than trying to wash all that goop off in the bath. He quite likes the showering, surprisingly. Mmmm...maybe this is all just a Sam-conspiracy! Well what a way to tell me he prefers showering over baths...I'd best teach him the sign for "shower" soon, in an attempt to save our home from further onslaught. So, we've done vomitting in a restaurant, vomitting in a car...what could possibly be worse than that? 

Other Smurfy news - I mentioned yesterday (or somewhere round there) that Sam's understanding of language is becoming quite exciting. He L.O.V.E.S. Barney's clap-clap song and we watch it sometimes ten/fifteen times one after the other. This morning him and I were playing on the mat in front of the tv, with Barney clap-clapping in the background over and over. After like Take 100, I'd decided we'd (or at least "I") had just about enough purple dinosauring...but Sam was not having any of it. He pointed to the tv, pointed to the remote (for me to rewind to the beginning of the song) and clapped his hands!!!!!!! It was AMAZING!!! It gives you so much hope to see, at least in this area, so much progress. I would be ecstatic if he could just attain ONE new gesture a day. Sure, actual words would be the most awesome prize...but till then I am quite content with having at least one way...any way...to be able to understand what Sam wants.

On closing, we had an extra five minutes or so waiting for Luke to come out today so took a pic of Meg reading to Sam in the car. But, Sam being Sam, was not content with just reading....


And before long.....
....had found something far more entertaining to occupy himself with. At least four/five times on each trip he manages to grab a handful of hair...some mornings Meghan arrives at school with a head of hair which looks like she's been dragged through a bush backwards and upside down. 

1 comment:

  1. So bleak and frustrating about the reflux! It is so disheartening. I remember that feeling well. I will email you about what we did with Matt's gag reflex. But how totally exciting about the communication thing. I remember some specialist telling me about the HUGE milestone it is when a kid realises that he can do something to communicate a message. That changes everything! If I remember with Matt, he needed to practice a lot on the first few gestures before he moved on to others. It was like he really needed to be convinced that they worked to communicate. So we would set up scenarois where he would want the thing he could gesture, and we would only give it to him when he gestured and give him lots of praise for doing so. That helped him solidify his learning that gestures help him get things. So I would let the Barney song finish and not let it start again before Smurfy requests it. You can also make up signs for the top 3 things he really is addicted to - for the first while use the signs whilst doing the activity, and then start to do hand-over-hand with his hands making the sign and then eventually expect him to do the sign before you do the requested activity. Matt defnitely learnt his gestures around fun activities e.g. being pushed while sitting on his changing mat, and seeing a big butterfly flap it's wings. Sorry for the long post - hope some of it might help.

    Keep putting one step in front of another, soon you will look back and marvel at how far you all have come. HUGS

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