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)

Saturday, February 12, 2011's off to therapy we go,

With a tear and a scream and some vomit? No! No!
Hi-ho...Hi-ho...Hi-ho, Hi-ho!

Yes, I know we were meant to throw ourselves head first back into therapy last week but with my sore throat and Sam's daily throwing up, decided to leave it for another week. So, we did physio on Wednesday and speech on Thursday. Physio, although accompanied by the squeeling and crying that had become a thing of the past, thankfully brought with it no throwing up. Sam's reaction was a little unexpected as Heidi took it super easy on him with a half hour of mainly just gentle rotations and stretching and not more than five minutes tummy-work. Guess, as with everything else since the op, it'll just take some time for him to settle down again. Speech was no less stressful, as Sam's speechie worked in his mouth (which of course he does so love) trying to desensitise his gag reflex again. He did show off his new hand-clapping expertise to both Heidi and Madre and even added in an extra dose of cute in ST when he leaned forward and gave the little doll M sometimes uses a little kiss! The only thing he's ever kissed before is his books and only after we've told him to (not kiss the book itself but, say, the kitty in the book). Sam's gagging is going to take a bit of work still, although the sides and front of his mouth are fairly okay, the second you cross the midline on his tongue he gags (which does kinda make sense). As for the sensitivity to temperatures (we have to repeatedly heat his bottles and food as the second it starts cooling, he gags) M hasn't really seen this before...but that's our Sam in a nutshell, isn't it? All things unfamiliar and unusual. We have a rather busy week or two coming up with appt's with Prof F, Dr C (orthopaed - hands) and Dr D (orthopaed for everything else) as well as Sam's therapies.

So what else has Sam been getting up to? As I've mentioned before, Sam loves playing on the keyboard although he was recently "banned" in an effort to avoid either him or the keyboard, or both, being hurt. He seems to somehow have understood because I let him play again this week and he was so gentle, whereas he would usually just bash the keys with either his hands or feet, he now plays with one tiny finger most of the time and has fairly mastered the Jerry-Lewis-style of running his finger along the keys. He now also claps for himself every time I say "Clever Boy!"...that's probably the cutest accomplishment of the week, nothing like a little self-praise. Or, self-rebuke for that matter : there's been some talk on the RTS listserv the last week regarding hair-pulling and throwing things, etc. Now, Sam has already started dabbling in both of these activities, especially the hair pulling (which has now claimed TWO unsuspecting strangers - one at the store and one at church, of all places) but also throwing things. I usually put him in his feeding chair while I prepare his cereal, etc and place a couple of toys on the tray to keep him occupied, but all he does is repeatedly throw everything off. The second you pick it up, the second he throws it down again. So, with the listserv talk in mind, every time he throws something off I lightly shake my head and say and sign "No". Now, over the past couple of days Sam picks the toy up, looks at us...first shakes his head...and then throws it off anyway!! So either he's confused and thinks shaking your head is the sign for "please throw it off Sam" or he's just been super cheeky. LOL! At this point, I think it's still very much a game for him as opposed to disobedience and how can you do anything else but laugh?

I've finally resigned myself to the lost cause that is trying to mix Pediasure with Nestargel. For now we do thickened S26 before sleeping and potential throw-up triggers (like car trips, etc) and then just plain old Pediausre the rest of the time and its working okay for now. Also, with the heat, it does help that Sam is having something other than that awful thickened mixture as he still refuses juice and water. I am not sure what he now weighs, he was 9kg on the dot week before last (it's almost hard to believe - seemed like such an impossible target) so hopefully he's picked up another 100gr or so, at least. The Cipla-Actin has definitely increased his appetite, as prescribed by Dr S, and it's wonderful not having to fight with him to eat or drink. We are still doing Hypafix on the cut, for at least another two or three months which works out great, although it's a bit of a mission or remove, the wound is obviously still extremely itchy so it provides some protection from tiny little fingers.

Meg is now settling down nicely into Grade 4 and Luke has written two tests so far, Maths of all things (his real achilles heel) and obtained 85% for the first one and 90% for the second...woohooo! I have been desperately searching for something to do from home which might bring in an additional income into the household, but am really battling to find anything which might work for us. I found numerous adds on a career site stating specifically "Home typist/Data Entry Specialist" and I thought Yay! That sounds perfect as it's something I can do after Sam goes to sleep at night. Sent in several enquiries and almost signed up for the one until the lady responsible was kind enough to be completely honest with me and advised that there's actually very little genuine typing work involved, you basically earn your money by trying to get others to sign up as well. So, still trying to come up with something....have considered 100% personalised printed mugs and plates, etc. (ie, you tell me a bit about the person and I will come up with a completely unique poem for the item) or even thought of special needs "Baby on Board" signs/stickers. Is there even anything like that in SA? If there was, I would certainly buy one. So...any suggestions folks?

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