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)

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 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