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)

Wednesday, January 25, 2012

Grumpy Smurf

By Saturday afternoon, Sam seemed to be feeling quite noticeably better. His eating and sleeping hadn't quite returned to normal (whatever that may be) but he seemed a little less fussy and thoroughly enjoyed his first swim of the year. We made sure to keep his shades on all the time, with great difficulty of course, because the Atropine (used to dilate his pupils in anticipation of the glaucoma examination) has still not completely worn off. It's really quite odd and the first time it's happened, but each eye seems to be returning to normal at it's own pace. The right eye's pupil is pretty normal, while the left still seems to be quite dilated. It's really quite freaky to look at.

Ooohhh...that little tongue, which is seldom actually inside Sam's mouth.

Err.....define "kiddies"pool again, Dad!

Sam gloating after I tried to take him out but quickly returned him to his little turtley-pool after he screamed blue murder! Cheeky smurf :)

I honestly have no clue what Meghan was doing here, not sure she has either. She did mumble something about a somersault at the time. A somersault? Boy, things really have the good ol' days a somersault looked more like a turning-head-over-heels movement than a.....??? Well, what she's doing..LOL

By Sunday Sam was eating as per (his) normal again and had a really good night's sleep as well, with me only having to get up about five times as opposed to the usual twenty-something...and it was mostly to reposition him after he somehow managed to land up with his legs and bottom perched on the wedge in his cot and his head at the bottom. Definitely not the most reflux-friendly sleeping position. Monday morning started super-positive that Sam is definitely on the mend which obviously means that next Friday's surgery date is sure to be achievable. And it just got better...on Monday afternoon Sam slept for a whopping THREE HOURS! He ate every bowl of food (all 150mls of it) without any resistance and on Monday night blessed us with another trouble-free night and again astonished me with a two hour and thirty-eight minute nap on Tuesday afternoon. I was almost excited about Sam going down last night, already making plans for what all I intended to do with today's almost guaranteed two hour freetime while Sam napped. ( plans I mean things like do the washing, update Sam's blog, etc). I just HAD to jinx it.

I don't remember Sam being still or anything remotely peaceful for more than about half an hour last night. He tossed and turned and whinged and whined as much as always and then woke up with a cough that is sounding dismally croup-like. And this morning's "free time"? Lasted a total of 17 minutes! It seriously just had to happen. I usually leave home at about 1:40pm to collect Meg from school so on Monday when by that time Sam was still sleeping and we were still reveling in his gorgeously long nap, Brampies went off to fetch Meg for me. Yesterday was also a little tense, waiting to see if he would wake-up on time for me to leave...which of course he did, with literally minutes to spare. Today I only had to fetch Meg at 4:30pm so his two/three hour long nap would have been absolutely no problem at all...had it actually happened, of course.

What are the chances that he can possibly pick up some other illness/germ within the next few days and again leave us no alternative but to re-schedule the orchidectomy?

No comments:

Post a Comment