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, December 28, 2010

Remember this.....

26th December 2009  

And while we know the more traditional, dare we say, "normal" way of measuring your child is with a measuring tape and growth chart, we say PHOOEY! to normal and once again bring in.....


 ...the 2litre coke bottle.

As you can see, Sam is doing some sitting again, without any problems. Was not sure if it might result in a bit of discomfort or even pain in the beginning, but it doesn't seem to be the case. We're still trying to maintain some "flat time" a couple of times each day and haven't allowed him to stand or anything like that yet. I still cannot believe how relatively easy it was to enforce the five days of down time AFP ideally hoped we'd manage...somehow I think the problem with Sam's right leg which, for a couple of weeks prior to the op, forced him to adapt to more sitting and lying down than he was used, played quite a significant role in preparing for a very relaxed recovery period as he has never been quite so content to just sit on the floor or on our laps reading or being sung too, etc.

Sam is having an even more trying time than usual with falling asleep in the evenings...perhaps a lingering bit of mild-trauma from the surgery, but we have to be patient and allow him some time to settle down again, even when it takes (like on Sunday evening) almost two hours and a great deal of vomitting before he eventually cries himself to sleep regardless of any amount of walking, singing, lying with him, calming music, a night light...you name it, we've tried it. Already last night went a bit easier and it only took about forty-five minutes to get him down. And speaking of throwing-up, his gag reflex has taken on a whole new dimension to it's sensitivity, where he's even battling to keep down his most-loved foods like vanilla custard and oats and honey. Again, we're going the patience and tolerance route for now and, even though its not nutriotionally the best solution, sticking to the more easily-tolerated of Sam's diet. Will wait it out another week or so, but I think after that we'll have to ask his ST and paed for advice. It's really quite strange though because after his thumb surgery he had this really fabulous appetite.

We are off tomorrow morning to meet with APF's associate, Dr F, at 7:00am who is going to re-dress Sam's wound for him as APF is currently enjoying some much-deserved time away. Quite keen to reassure myself that the wound is doing okay, having taken all Sam's stunts and acrobatics into consideration, which couldn't have made healing all that much easier. Also keen to find out how much longer Sam has to remain "bath free" - apart from the obvious delight Sam takes in his evening baths there's the obvious hygiene problem. Sam has at least one thorough bed bath per day, some times as many as two or three, with all his increased throwing-up but we still haven't found a way to wash that serious mop of hair yet, without putting strain on his back. So, Sam has to make do with me doing what I can with a washcloth and jug, but it's just not doing the trick!!

Although it does look kinda cute afterwards!

3 comments:

  1. So glad that Sam seems to be doing so well apart from the reflux problem its just amazing how tough he is. The picture of the new hairstyle is gorgeous I think that you should never wash his hair again he looks too cute and what about the wonderful smile. Lots of love hope the outcome of his check up went well.

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  2. Dear Nicky,

    I've been following your blog about Sam. He's such a cute little boy. The reason I've stumbled upon your blog, was because I've searched for information on tethered cord in South Africa. My daughter's just been diagnosed with this. I would love to ask you some questions, since she's going to have the same surgery Sam just had. Would it be possible for you to email me? My addy is net@webafrica.org.za. Or you can go to the blog I recently started, http://roadtosanmichele.blogspot.com/ I would appreciate it so much. Thank you! Essie.

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  3. Sam is looking so good sitting there with the coke bottle. He is really resilient. Go Sam. You must be relieved!!! Hope the wound redressing went well. And praying that the reflux stabilises soon.

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