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)

Tuesday, October 4, 2011

Mom-losing-it...again.


I am feeling ever-so-slightly overwhelmed with all Sam's doctor and therapy appointments at the moment. Was sooooo looking forward to a "quiet" week what with the short school break but before we knew it, every day was filled with one or the other intervention by the end of last week already, with the exception of today when we got to enjoy a totally unmedically-related breakfast with Aunty M and the boys! (Dankie julle xxx). We did also manage to slip away to Stilbaai for the weekend to celebrate Ouma's birthday with her and, even though the trip started off a bit shakily when part of my tooth (for which I am currently undergoing root canal ) went M.I.A. after I bit into a cheese puff (yes...a cheese puff) only an hour into our journey. Still, the remainder of the weekend went well with Sam being not too whingey on the ride there and, other than one throw-up incident on Saturday night, us being able to enjoy some quality time with family.

Sam had his very first appointment and assessment with his new NDT speechie on Friday morning. We are going to be using the Prompt speech technique with Sam initially which, although it seems a little intrusive for Sam's liking at the moment, looks really promising. Sam's OT, Pippa, has offered to do a short 15min session with Sam before his speech appointments to help desensitise him, which I am going to mention to his ST on Friday. Yes, I've said it a million times...and, please Lord, let me say it a million more....having therapists/doctors who go over and beyond their professional requirements is key to both your SN child's and your own confidence and wellbeing. Pippa and I were discussing the need for Sam to return to PT as well (which I've neglected recently because I felt his sensory defensiveness and desperate need for communication are currently far more pressing) as muscle tone, imbalance, etc can also play a part in speech difficulties. It was just one of "those" moments when all of a sudden, in a split second, everything just seemed too much. In my mind I had just seemed to get on top of Sam's schedule and needs. To top it off, bouncing around in the back of my mind constantly is the fact that Sam's orthopaed's (the "other" orthopaed - legs, hips, feet, neck, etc) assistant phoned on Thursday morning and asked me to please bring Sam in this coming Thursday. Normally we only see him every six months, with July having been our most recent appointment, and neither he nor many of Sam's other doctors very regularly phone US to schedule appointments. So when Pippa mentioned the PT, for a moment I felt a little fragile and, if the truth be known, there might have been an ever so-slight lip quiver and stray tear forcing its way out (much to Meghan's absolute horror). Once my flash of weakness and uncertainty had disappeared, we discussed the possibility of scheduling a team meeting with all of Sam's therapists and specialists, in order to make sure no areas are being overlapped nor, more importantly, neglected. I am not sure about the practicality of such a meeting with everyone's hectic schedules, but certainly do see a need for such a meeting so will mention the possibility to the parties concerned and see what the reactions are.

Tomorrow we are off to the hand OT to have a look at Sam's splint. The nighttime wearing of the splint has not been going well, with the one night Sam seemed to be tolerating it relatively comfortably being the night that he threw up in Stilbaai...and all over the splint. I am a little concerned that it is not a perfect fit as the little finger, being the most bent at this point, seems to evade the strapping completely.

On Thursday we have the requested appointment with Dr dT and then on Friday we are off, iPad in hand, to ST.

Alas, there is a light at the end of the tunnel...we have been invited to share in the celebrating of Matt and Nic Tooke's birthdays, this coming Saturday! It will be WONDERFUL to get to visit with our RTS family and catch-up in "real life" on all the events of the last few months.

2 comments:

  1. Aw chin up there girl just as well you can do all of this without having to still do the school run. Hope the week gets better for you.......love you lots Anthea and Mom

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  2. I'm with you...sometimes enough if enough! I'm praying for a respite from the doctor visits and time at home to enjoy your beautiful son.

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