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)

Monday, August 2, 2010

MADDAY! MADDAY! Man down!.......

....Oh No, another man down......Double OH NO! Now we have a smurf down!

My goodness folks, what a week we've had...and by that I mean...WHAT A WEEK WE HAVE HAD!

FRIDAY last week started with the traumatising and harrassment we've become accustomed to over the years from a certain "Adversary X" (I am not going to go into any further details as I would hate to poison Sam's blog with the relentless negativity which surrounds this person). So, Adversary X's T&H continued into late morning on Saturday.

SUNDAY: Good friend Kim remarked at church that Sam's top upper gum looked quite swollen and that he would probably be getting another tooth soon (her youngest is one year's old so she still has such things fresh in her memory). I thought "Easy Peasy Lemon Squeezie", the first three have come out quite easily without much ado, surely this one will follow the same pattern.

MONDAY: As brilliantly predicted by Kim, Tooth No. 4 made it's appearance and with it a firm statement that there would be no "Easy Peasy" here. Along with the little bit of grumpiness the latest addition had brought, Sam was having some rather painful bowel movements and screamed in pain every time he dirtied his nappy.

TUESDAY : Morning - Sam still screaming in pain with every bowel movement and, to add some further excitement, Adversary X throws us another doozey! I decided to make an appointment with Sam's paed to discuss the tummy problem Sam seemed to be having and got an appointment for Friday which wasn't too much of an issue as he's had these episodes before and they seem to right themselves after a few days. Afternoon - the fatal attraction sinus infection I've had for like the last 2 months decides it's certainly not getting enough attention with all my self-medicating and decides to spread its cheer by going into my ears and throat. Late Afternoon : Meg comes to me complaining of lower abdominal pain when she goes to the loo to make a Number One.

WEDNESDAY : Wake up with whhhhiiiirrrrrroooooosssshhingggg noise in my ears and hectic bags under my eyes from not being able to sleep due to blocked nose. Wake Meg up for school, who immediately tells me the pain in her abdomen is still there. Decide to give her some Citrasoda as this has happened before and to give it some time, make an appointment for doc for myself, who confirms sinusitis & upper resparitory tract infection and prescribes an antibiotic. Arrive home from my doc's appointment and find Meg in hysterical tears because "she is weeing blood". Make another doc's appointment and go off with a rather dodgy looking urine sample. Doc confirms Meg has hectic bladder infection...AGAIN!...and prescribes an antibiotic. Meghan has this unbelievable fear/phobia about going to the loo at school and so holds it in from roughly 7am in the morning until she gets home after 2pm in the afternoon! She got a talking to from both our GP and paediatrician so hopefully we won't be doing this again anytime soon.

THURSDAY : Wake up to the sound of Sam's snotty nose - oh no, not another patient! In the afternoon spend twenty minutes watching Sam agonise through what-was-supposed-to-be-therapy but instead becomes a flood of tears and runny nose. Cathy confirms though that Sam definitely seems to be coming down with something - disappointment sets in, we were planning a surprise trip to Stilbaai for the long weekend. We were going to keep mum about it and then wake the girls up on Saturday morning and say "pack your bags, we're off to Stilbaai". Now our plan looks like it might not happen.

FRIDAY : Have, as always, a thorough consultation with Dr Bristow who says that he thinks Sam might be coming down with another viral infection and being the wonderfully efficient doctor that he is, gives me a prescription for an antibiotic just in case. We also discuss Sam's tummy problems, still very obvious delays (like sitting, etc) and then the signs that Sam is showing which might indicate a tethered cord (the turned-in foot, no-sitting & seemingly small capacity and erratic bladder). Dr Bristow feels this is something we need to check out sooner than later and has already begun the process of scheduling an MRI. We won't mention about with who, it was decided, the blame lies for Sam not being able to fall and stay asleep at night.

SATURDAY : Sam has full blown viral infection - coughing, sneezing, runny nose, gagging from all the mucous, etc. good call Dr B! So we had a wonderfully sleep-deprived night :-) Still we decide to hold off on the antibiotic for one more day but by Sunday morning, after yet another sleepless night and mucous that is going yellowy, we fill the script and give Sam his first dose.

So thats where we are today (after yet another sleepless night) - waiting in anticipation for any indication that we might still be able to make it to Stilbaai. Of course the bottle-drinking is going just SWELL! The last bottle took almost two hours, Sam first tried to drink but couldn't breathe & swallow through the same orifice, then I tried to suction him to clear the nose but this made him scream, which produced more mucous, which then again left us at square one with him not being able to drink...aaahhh, the joy! Eventually after a hysteria-induced sleep, we managed to finish the bottle.

And now for a few pics......


Sam is soooo happy to have splintless/bandage-less hands with which to practice his keyboard with. Although he became quite creative while they were still in splints and would quite efficiently use his feet instead.
He even found the time to give Dad a few lessons
It was Chrisna's birthday on 17 July so we took the girls to Grand West for some ice-skating & rides at the mini-funfair. Sam managed to fall fast asleep in the middle of it all, even though we sat right next to an ice-rink of screaming kiddies!

Luke refused to be in any of the photo's but wouldn't miss an opportunity to sneak those darn bunny-ears in somewhere.

Luke and Sam are having a competition to see whose hair can become the most unruly by the end of the week......and I think that........

Sam might take this one!

And even though our little smurf is so sick, he still finds the time to shower us with the most beautiful smiles (in between the screaming, gagging, coughing & spluttering that is).

2 comments:

  1. Oh my Nikki, that's a lot all at one time! I wish you all a speedy recovery.

    I hope everything turns out o.k. with the MRI and tethered cord issue. Nathan sat up on his own exactly one month after his tethered "low lying" cord surgery. He also could finally get those much desired toes into his mouth to suck and chew on after surgery...it was all worth it!

    My best to you!

    Brandi

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  2. HUGS HUGS!!!!! Sounds like a real battle on so many fronts. Please don't hesistate to shout if you need any more input on the MRI procedure - from Lloyd(doctor input) or me(mom input). Sounds like Dr B is amazing though - you are in good hands. Praying for speedy recoveries for all the infections in your house. Love the pics of Sam - can't wait to see him again when he is a bit better :)

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