Sam. Conqueror. Overcomer.

On the 15th May 2009, Samuel Christian made his way into this world...two month's premature and in severe respiratory distress. Within hours, Sam was diagnosed with Rubinstein-Taybi Syndrome - a very rare congenital disorder, of which little was known. The diagnosis together with the immediate challenges Sam faced to thrive became our core focus and it was with joy and thankfulness that we eventually brought Sam home, after nine weeks in the NICU.

As time pressed on, it became obvious that Sam's development was falling behind that of his RTS peers. Shortly before his 5th birthday Sam underwent a brain scan and it was confirmed by a paediatric neurologist that in addition to Rubinstein-Taybi Syndrome, Sam also has Cerebral Palsy related to his premature birth, as well as Autism.

This blog chronicles our journey through these challenges...
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 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, June 17, 2014

Eating Matters

One thing about sensory challenges, life is never boring or predictable. And today's no-no's become tomorrow's acceptables at the drop of a spoon...and vice versa.  
Up until a couple of weeks ago Sam was sporting a ferocious Cipla Actin-induced appetite which was satisfied by nought and which almost always overpowered his sensory aversion to his usual no-no foods. One night, having just finished dishing up our supper, Sam spotted my plate of chicken and whatnots while I quickly pureed up his own food so that we could eat together. Sam kept pointing at my plate and signing "eat" and eventually, in the hope of trying to finish his dins off in peace, I obliged and gave him a mouthful and waited for the gagging.  A minute or two later his mouth was empty! I was like "What? Really"? I'm standing here mushing up meat and veggies while you just smoothly chewed your way through CHICKEN!"
Keen to make the most of this sudden new accomplishment I offered Sam another bite and yet another and then eventually we all settled down to eat. My eyes caught a glimpse of something brownish-yellowish on the wall. And then another such blob on Sam's play mirror and yet another on the floor. I asked Meghan to see what it was, but she just shrugged that she couldn't make it out. Closer investigation revealed the unknown matter....chewed up chicken! What a laugh we had. And a few days later when Sam insisted on some unpureed cottage pie from my plate we saw exactly how the chicken had landed up plastered all over the place...he would chew it to the point of no recognition and then frantically brush it off his tongue and just fling it. Funny little boy :)
I have since removed the Cipla Actin from Sam's meds as I think it was largely contributing to his misery by making him almost insatiably hungry but still offer him new textures all the time. This afternoon Meg and I had egg and mayo sarmies for lunch and Sam quite likes egg so I made him his own half a sarmie.  Sam still shudders with displeasure if you make him hold and bite his own food. If you break up a cookie and give it to him in a bowl he will easily enough eat it as it requires a limited amount of handling before it is safely in his mouth. But as yet he doesn't seem able to tolerate the sensation of having to bite off pieces of food...and his egg and mayo sarmie was no different. Every time the filling touched his mouth he shuddered. So this is how egg and mayo sarmies are eaten in Smurfville...
So at last week's neuropaed appointment, Sam was prescribed some Risperdal to try and manage his, currently, very high sensory and anxiety issues. I was really worried about having to try yet a new med but NNP assured me that Risperdal is very often successfully used in children with Autism. We are on Day 6 so far and although we were told that we could only expect to see a real difference in about 3 - 4 weeks, I do have to admit that there is already some improvement with being able to cope with issues which would usually send Sam over the top. The previous Sunday we had attempted a short trip to a local shopping lasted all of about 30 seconds and ten steps into the mall before Sam just freaked out and he and I spent the remainder of the trip in the car singing "What's your favourite colour?" This passed long weekend we managed not one but TWO shopping trips with very little difficulty. In addition, as hoped for by NNP, the Risperdal seems to be having an effect on Sam's sleeping too and we've had only two really disruptive nights out of the six. Here's hoping this is that much-needed light at the end of this particular tunnel :) Tomorrow's dentist appointment is going to be the real test (Eeeek).

And when life becomes too challenging, we swing...... 
...and swing some more xxx 

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