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)

Thursday, September 18, 2014

An untimely demise...

...of Sam's left testicle is suspected. You know, the testicle which (so it seemed) had made a relatively safe relocation from it's original position up yonder abdomen, unlike it's rightside counterpart which had to be evicted. I noticed a while ago that that little testicle, apparently homesick, had gone MIA. Upon closer examination yesterday, Doc Paed discovered that the unit (?)...was not so empty after all as there appears to be some sort of small mass of tissue there but not the right size or consistency of a healthy testicle. We will of course confirm with a scan but it seems very likely that the lil Smurfy dude is now testicleless. Yay for hormone replacement...when the time comes, of course. Although I'd be lying if I said I'd be totally devastated at having to skip another dose of teenage hormones.

Matters of all things testicular was not the sole purpose of our visit to Doc Paed yesterday. First and foremost was the wheezy/congestion/coughing issue and then the fact that, at the time, Sam had gone 4 days without a bowel movement (and here you thought we were moving into less 'eeeeuuuuuuu' territory! ).

It's a bit of a catch 22 really. While, most of the time, Sam seems very ready from a sensory perspective to move onto more solid food, his digestive system just doesn't seem in sync. And it's about the fourth time now that we find ourselves dealing with constipation/impaction problems this year...which inevitably leads to urinating issues and what not too. So we're back to pureed foods and our good ol friend Pediasure, as well as a hugely increased dose of Movicol which already seems to be helping as we've had about 4 poops this evening. No spectacular proportions yet, but at least there's movement. Yay!

Antibiotics and some Celestamine for the throat and sinuses but I can hardly complain as Sam's had a pretty good run through winter this year. He's grommets are apparently sitting at very odd angles, no doubt working their way out but given that they were only meant to last about 12-18 mnths and it's been 15 months now, it's really quite expected.

And one of Sam's newly acquired skills is stripping, because teaching him to undress himself seemed like a good idea at the time. When I tried to get him to nap the other day (Bwaahaha...napping! A momentary lapse of reality) Sam decided to strip in protest. When he only managed to remove one layer of clothes, he stripped the bed instead. He was finding it all too amusing...until I made him pick it all up afterwards (with me being his 'walker' of course)...

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