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, February 4, 2014

We're having a wee problem

And by "wee" I don't mean small because it's certainly not a small problem at all.
With Sam still sleeping poorly and still going way too many hours without passing any urine, we popped off to see his paed yesterday. Sam's bladder was somewhat distended and very full so Doc Paed marched us off to radiology for some vomiting (inevitable)and a scan. The scan showed about 50mls of  'sludge' in Sam's bladder and a slightly enlarged right kidney. Doc Paed's thoughts on the 'sludge' is that it might be some debris from one or more of Sam's current meds. So the plan of action for the next five days is to hold up on the Faverin (anxiety) and Motillium and start Sam on some Cardugen, which should relax the muscles in the bladder and hopefully bless us with more frequent wet nappies. An added bonus Doc Paed mentioned is that the Cardugen might help relax Sam overall and make for some much-needed sleep.
And that it did for sure. Sam slept a solid 11 hours last night, hardly moving at all...

But Sam's nappy stayed dry for another 14.5hrs despite the Cardugen apparently taking only 2 hours to start having an effect. Doc Paed advised that going 6 hours without passing urine is reason for worry so 14.5hrs plus plenty fluids and a dose of the relaxant is a little stressful. This morning he decided to add an antibiotic too in case there's an infection lurking somewhere that we can't pinpoint.  Being Motillium-free is also going to be rather entertaining as the Motillium prevents vomiting and helps the stomach empty a little quicker so, with Sam's tummy emptying at about the same pace as a snail doing the Comrades, we're surely up for some v-wording.

On a good note (well kinda) my body was so relieved and grateful for a decent night's sleep last night that it blessed me with a truly wonderful dream. I dreamt we were sitting at the diningroom table and all of a sudden Sam WALKED passed and I was like WOW! I so get Jessica's (Sam's RTS brother Alex's mom) post from almost five years ago when she blogged one day about sitting on the sofa and all of a sudden seeing Alex's head bob passed and how seeing him walking was quite surreal. I woke up all dream-happy and even slightly excited at merely just the thought of Sam walking someday. Truly can't wait.

But first, there's gotta be pee!

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