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...
SAMUEL - COMPLETE IN GOD
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 happening....to 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)

Friday, November 19, 2010

PEARLY BEACH...HERE WE COME!

It is Sammy's Granny's birthday today - HAPPY BIRTHDAY GRANNY/MOM!

As mentioned earlier this week (or somewhere roundabout there - not great at time-keeping lately), my mom, aunt and uncle were meant to come down to Cape Town for a visit, however, their plans were unfortunately changed which was quite disappointing as Sammy last saw his Granny in July and, with his (possibly not - more about this later) upcoming surgery, we are spending the holidays at home this year in order to stay near to a hospital, just in case. We are also not sure how much discomfort Sam will be in. So, we decided at the last minute, that we are going to attempt a day-trip to Pearly Beach tomorrow (which means 2.5 hours there and 2.5 hours back...all in one day!). I am hoping that Sam will be okay with the lengthy travelling as, particularly at the moment, we sometimes wait for approximately an hour outside Meg's school in the afternoon waiting for her to come out and he manages quite well with this, even though the car is stationary. At the moment Meg's school is busy with year-end exams which means that the normally staggered finishing times for the various grades, is now converted to the same closing time for the entire school which means a traffic nightmare trying to find parking anytime from forty-five minutes before the bell goes or having to walk a good couple of km's to your car if you don't get there early enough. Thank goodness this is only a once-a-year procedure.

Back to the surgery - Sam's neurosurgeon is currently overseas, where he's been since mid-October. I have been battling to confirm with his office a time and venue for our appointment with him on Monday and so, at this moment, have no actual idea as to whether we are even going to get to see him as he only returns to SA on Sunday, leaving not much time to finalise an appointment. Can only wait and see how Monday pans out.

As for our Smurf - Sam's actually had two really good days (we won't mention the three days prior to that - PHEW!) He had a really good physio session on Wednesday morning (not sure if this is what changed his mood, although I doubt it) and, although he isn't quite near mastering it yet, is slowly but surely starting to get some idea of this whole much-ado-about-nothing crawling stuff we keep trying to ram into him. I don't know if I posted about it, but Sam started sitting properly a couple of weeks ago...I seriously need to sit down one day and read this blog so I actually know whether I am coming or going - it's not like I have an excuse not to have done it yet with all the free time I have during the day/night to sit down and relax, have a cup of (even just slightly) warm tea and spend a good hour or two in front of the pc. Moving along, so Sam showed some great improvement with his "crawling" on Wednesday, although whereas before it was his legs he was battling to co-ordinate, he now moves them quite well but appears to have very poor strength in his arms and, especially, his shoulders. Heidi has thus given strict instructions to completely limit Sam's "walking" which I thought he was really going to cause havoc about, but its actually been not too bad...we spend more time sitting and playing on the carpet and every now and again I just flip him over onto his hands and knees and we practice a little. Whatever has been bugging him over the past few days also seems to have let up a bit - I don't know if its just coincidental, but the Movicol has kicked in nicely so not sure if his constipation issues were the main problem.

We've also decided that we need to get Sam to an OT sooner rather than later, as his paed suggested several months ago. Although it eased up for short while, Sam's Moro Reflex is conspiring with his reflux with the whole comeback performance thing - so, seeing as its now well over a year since this reflex should have subsided, I think its become quite essential that we have him assessed by an OT who, preferably, deals with not only the sensory integration issues but the reflex integration problems as well. First going to wait and see what happens on Monday before going ahead and making any appointments. Speaking of the reflux though, it hasn't reared its ugly head in almost a week now....well, except for a very brief episode when giving Sam his supper tonight - Yay! I so love not having to avoid showers of vomit cascading all the way down my shoulder and back at least once or twice a day. I don't even cringe anymore, before I would still try and out-maneuver the vomit to try and have most of it land on our (yes) newly replaced carpets but I don't even bother anymore. Hey - at least I can throw my clothes in the wash!

Overall, the week has ended on a high note with our Smurf being pretty calm and easygoing...let's just hope this continues into tomorrow's trip :-) As for the rest of the clan - same old, same old....! We've had some pretty warm days which of course Meghan was ecstatic about as I told her she could only start swimming once the temps started hitting the 30's (she's been asking to swim for like the last month or so already). So, on Wednesday I gave in........

Meghan (in full kit) was at first very enthusiastic about how warm the water felt,

until she put more than just her feet in the water! The water is still freezing, having only had a handful of really summery days so far. Sam splashed around in a whole 5mm of water in his little inflatable pool, but couldn't take a pic as I had to sit next to the pool keeping an eye on him. Next time.

And of course, Summer means not only swimming, but also chocolate ice-cream
(Okay, so does Autumn....and Spring.....well, and Winter too).



"Truly, the greater a Christian is, the more he realises his dependence on the prayers of others.  Paul knew full well the power that was against him and he did not hesitate to ask for the prayers of the church in Ephesus.

Notice also that his request for prayer was clear and specific. When you ask someone to pray for you, be equally specific. Don't just say "Pray for me," but "Pray for me that..." 
Selwyn Hughes

1 comment:

  1. Nicky....that chocolate ice cream picture is just SO SO SO SO SO ADORABLE!!!!!!!!!

    Good work Sam on the sitting and crawling progress!!!

    ReplyDelete