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, October 29, 2009

Now What?

First things first....Sam's visit to the ENT Specialist went better than I expected, for two reasons. One : Although he did cry a bit (Sam, not the ENT) it was nowhere close to his usual hysterical , out-of-control crying and Two : I was really worried that the ENT's first course of action would be to put Sam under aneasthetic and put in grommets but our first plan is to treat him with a cortisone nasal spray for a month to see if it doesn't decrease the amount of mucous he's producing, which is actually what is causing the fluid build up in Sam's ears. If this doesn't work and we do need to resort to the grommets and taking out his adenoids, his ENT reassured us that he works with an excellent paediatric anaesthetist and said he would first set up a consultation with her for us where we can discuss the usual problem RTS kiddies have with anaesthetic like trachea collapsing, irregular heart beats, etc. So that put us a little at ease. He also suggested that we change Sam's formula, which we've also done.

Sam's physio session on Monday also went better than usual...but thanks to Meghan I am afraid. I couldn't take him in the morning, so Meghan was already home from school when we went. Just as Sam was about to go off (after a whole fifteen seconds) Cathy asked Meghan to shake Sam's rattle to distract him and it worked like a charm...well for Sam and Cathy at least, not sure how much Meghan enjoyed it. It was the most work Cathy's managed so far with Sam and he even sat for a period of about three minutes, completely supporting himself on his two tiny little matchstick arms...and they really are like little matchsticks...he's never looked so small as at that moment, this tiny little smidge of a person doing something which, if you don't know how old he really is, looks way to "grown-up" for him.

Spot the doll!
But something has gone horribly wrong since then....our Sam is back on sleep strike during the day, but SERIOUS sleep strike. On Tuesday the longest he slept for was 20 minutes....20 MINUTES!!!! Do you know how much you can fit into 20 minutes, when you need to take a shower, wash and sterilise baby bottles, tidy the house at least somewhat, eat something yourself and when just making his formula now takes almost an hour alone with first having to prepare the gel thickener. So when I went to sleep onTuesday I hoped that he'd just had a bad day, but then Wednesday was the when I went to sleep on Wed I hoped he'd just had a bad TWO days....and then would you believe he slept from 8pm on Wed night until 5am on Wed morning and then had another 3 hour and fifteen min nap on Thursday morning and I thought...YAHOOOOOOOOO...whatever the problem was it solved itself (aren't those just the best problems to have?). But by yesterday afternoon he was back on strike and did his usual three hour wake-ups last night and back to no sleeping again this morning. So now what? I cannot figure out what it is that so quickly and drastically changes his sleeping routine. Weird.

Anyhoo....Meg and I are off to the ballet tomorrow....I am not sure who is more excited :-) Can't wait!

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