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)

Saturday, April 2, 2011

"V-word"

After my "Completely Unreal" post on Wednesday, Sam's throwing up really got out of control. Everything he ate/drank from about 12pm on Thursday came up, he even vomitted in his sleep on Thursday evening after I put him to sleep and again on Friday morning while I was holding him, in an upright position, after falling asleep while having a bottle. We decided to take him to see his paed, who managed to fit us in at 1pm on Friday afternoon. So Dr B thinks there are two possibilities - Sam either has a bit of a viral infection/tummy bug or Sam's sensory issues are still even more severe than we thought - or it's a combination of those two. As I posted a few days ago, I had decided to put Sam back on Nestargel, right smack bang in the middle of his SID (Sensory Integration Defensiveness) peaking. I know - you must be thinking "What on Earth could Nestargel have to do with SID?" Even when Sam's new OT mentioned on Wed that severe SID can be THAT brutal that it can effect one's gastrointestinal system, I wasn't quite certain what she possibly meant - now I do though!! But, then on the other hand, the return of Sam's snoring and stuffy nose could be related to a viral infection and not reflux at all. So Dr B suggested I stop the Nestargel again, straight away, which I did....and?? No more vomiting, other than a tiny bit this afternoon but Sam also happened to be in the throw of a particularly vigorous bout of flapping when it happened. (And of course we all know by now that, with near certainty,  Samuel will vomit within the next hour just because I have dared to blog again that he hasn't).

We can't completely rule a viral infection out but it would be quite a coincidence that most of his excessive vomitting started again when I re-introduced the Nestargel and stoppped again when I withdrew it. (As I am typing this, Samuel has just woken up and started moaning - Chris is with him now, but if he does throw up I will have to accept that somehow me posting on this blog is jinxing Sam's health and just call it quits. Please! Please! Don't throw up Sam.)

Let's do a quick change of subject - I totally expected Sam to have lost a significant amount of weight by now and, although he hasn't picked up much, he does now weigh 9.75kg which is not too bad considering the "V-word".  I have been so thrown over by the "V-word" lately that I don't know if I've mentioned Sam's crawling progress yet! Sam can crawl about five or six "steps" at a time now, albeit it only in places where he feels safe and secure, eg. on the bed and far away from any "larger" items of furniture, like tv units, cupboards, etc which play on his depth perception sensitivity. Oh..and did I mentioned that he can wave "Ta Ta"?? Again, like with the clapping, he can now follow a verbal instruction to wave as opposed to just copying someone else doing it. He understands most of what we say to him and responds by making his Sam-style grunts or hand gestures...which is most certainly not the ideal form of communication, but a form of communication nevertheless.

For me, the whole sensory thing has really knocked me into a daze of uncertainty and frustration. Sam's RTS seems to pale in light of the debilitating effect this is having on us and, more importantly, Sam. But as always we push ahead because there's little else we can do, other than shed the occasional tear of sorrow. On a more positive note - we have decided to chance the trip to Stilbaai tomorrow so here's holding thumbs for a "v-word" free drive, both tomorrow and on Tuesday. And, still on the positive, it is my birthday tomorrow and although, as with everything we do lately, it has been pretty low-key I did get some lovely gifts from Brampies, Cammy & Damien, Joe & Meg and, of course, Chris. Chris and I are contemplating going out for a quick breakie tomorrow morning before we leave for Stilbaai but will first have to assess both Sam's and Brampies' frame of mind in the morning.

In closing I have to add that I am super thrilled with Meg's report for the term, obtaining all 4's (out of a possible 1-4 grade, with 1 being the lowest) and an awesome 100% for Technology, 94% for EMS and 92% for History! Well done, Megs!!! What a huge relief after the year started off with a rather dodgy beginning :) Luke only gets his report next trimester, which only starts 11 May but, if his test/assessment results so far are anything to go by, his grades should follow the same suit.

GRACE SUFFICIENT


My grace is sufficient for thee: for my strength is made perfect in weakness. 2 Cor. 12:9

His hand is on you still,
As you seek and do His will.
Don't give in to despair,
Rest in your Father's care.
For when you think you can't take it,
He will give you grace to make it.

Gene Griffin

4 comments:

  1. I pray that all will go well on your trip up the coast and that you have a BEAUTY-FULL birthday tomorrow!! May God bless and bless and bless you even more this coming year. And a high five to Megan on that beautiful report card - well done!! XXX G

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  2. Hugs to you! Happy Birthday!

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  3. Well done to Meg what an awesome girl she is....wow you are wonderful we are all proud of you.....

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  4. Thanks Cindy and Aunty A and to you Grietjie, thanks and a huge CONGRATULATIONS on the great news of Baby No. 3 being on the way. You must be sooooo excited. xxx

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