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)

Wednesday, January 6, 2016

Celebrations Re-visited

Six days into 2016 already! Wow! I so planned an end-of-year, this-is-where-we're-at post. Guess we're doing a beginning-of-new-year, this-is-where-we're-at post instead.

Festive-Season plans were kept on the subdued side this year as Sam was scheduled for a Tonsillectomy on the 15th and the ENT doc had told us to prepare for a pretty hellish two weeks of recovery. And what would Christmas be without a surgery/illness anyway, right? Christmas 2010 we did Spinal Cord surgery on the 20th December and since then some-or-other bug each and every year.

On the 14th December (having finally made peace that removing Sam's tonsils was the only way to go and keen to just get it over and done with) we had a consult with Doc ENT, who had last seen Sam in October, to a) run through the final details for the following day's surgery and b) check that Sam was good to go for theatre and, more importantly, anaesthesia. After an extremely thorough examination Doc ENT concluded that he could not be certain that Sam's tonsils were the cause of us not having had a decent night's sleep in the last six week. Yes, he reasoned, the tonsils are enlarged but not barely close to what is referred to as "kissing tonsils" which is when the tonsils are so large that they actually touch (can you imagine?). Sam's greatest breathing issues come from having an extremely deviated septum in the right nostril which is almost completely obstructed (so much so that when I spray Sam's nose he has to lie on his back to allow the little pool of liquid to slowly drip passed the septum) and the common RTS floppy airway. Doc ENT advised that there are usually only two reasons why tonsils should be removed...significant airway obstruction and repeated tonsillitis (more than twice in a twelve month period). Already confident that removing the tonsils was not going to make a worthy difference to Sam's quality of sleep (which was our main objective) and with Sam last having had tonsillitis about 4 years ago, he was not 100% comfortable with going ahead with the Tonsillectomy and presented it in a pretty convincing argument, saying that should there be any complications and he was to land up in a Court with questionable motivation for having performed the procedure, there would not be sufficient medical background to substantiate his decision. scrapped for now!

Doc ENT did refer me to a dietician as he feels we are not managing Sam's reflux as efficiently as possible and this is in fact what is causing the constant irritation in Sam's throat. He suggested trying to get Sam off pureed foods completely and as quickly as possible as the absence of chewing (which stimulates the production of digestive enzymes) aggravates reflux and also suggested a completely dairy-free diet. Yikes! A tall order for a kid with extreme sensory challenges whose diet consists purely of pureed meat and veg, cheese, yoghurt and the occasional mushy mac and cheese. Oh well...what were we to do but give it a go. Doc ENT feels that with an adequate lifestyle-change regarding Sam's eating habits, his reflux should be so efficiently managed that medication should no longer be necessary.

For 13 consecutive days (starting immediately on the 14th)  the Lil Smurfy Dude ate all things un-pureed...WHOOP! WHOOP! Chicken and even beef finely cut up and mixed with veggies and couscous was a HUGE thumbs-up. And then? He stopped as quickly as he'd started and we were back to pureed foods. Well, actually at this point, we're back to NO food as its been almost a week of him refusing to eat anything at all! Talk about from one extreme to the next...special needs parenting is most certainly just that...EXTREME!

Sam's adult front tooth (the baby one which he ground down into the gum which then had to be cut out in theatre) has been struggling to come through for some time now, you can see it sitting there in all its toothy glory just under the gum. It just can't seem to break through the gum, possibly because that section of gum was sutured up as opposed to having a "gap" where ordinarily the baby tooth would have fallen out. So that could quite possibly be the cause of his not wanting to eat. Sam does also have a bit of a crampy tummy-thing going on so perhaps even a bug in the brew...who knows? But even if it is a bug, the 6th of January is most definitely not considered "Christmas-time" still (just smile and nod, okay) so...YEAH!!! for our first illness/surgery-free Christmas in five years. Ah, as they say, celebrate the small things!

Aaaaand...another hidden blessing of special needs parenting...some time in the future we are going to get to celebrate Sam tolerating un-pureed food again (this was like the third time already LOL!) Just like we are going to get to celebrate him taking one or two unassisted steps again. What could be sweeter than living those precious moments more than once? And each time is as awesome as the first :)

Ooooooh...talking about celebrating...we have finally managed one other liquid other than warm Pediasure out of a bottle (right through the sweltering heat of Summer usually) and it be litchi juice out of a juice box! Fair enough Sam isn't so much sucking on the straw (or even closing his mouth on it) as what I am squeeezing the juice into his mouth, but's juice...out of something other than a counts ( and nod).

Happy New Year everyone...may it be a Blessed and prosperous one for us all xxx

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