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)

Thursday, October 4, 2012

Smurfville under Construction

Four weeks ago, on the 6th September, Samuel acquired a lovely little niece named Mia.  (The fact that Luke thought 38 was as good an age as any to make me a grandmother *ouch* is a whole other blog on it's own).  I was quite eager to see how Sam would react to a real baby so close up, as he gets super excited when he spots other "babies" (which is roughly any child between 0months - 10years old for Sam).  With Mia still being so tiny and not providing Sam with much entertainment value, he seemed generally disinterested. And then, one afternoon, as we all climbed into the car, Mia cried.  And then Sam cried.  And then Sam screeched in sheer distress.  He was thoroughly and completey upset.  He's developed a tendency to start whimpering himself whenever he sees another baby/child crying on tv but has never quite become so upset.  If it wasn't so earth-shatteringly painful on the ears, it would've been kinda cute :)


Mia

So we've said our final goodbye's to 20 Hillary Street. The place I crashed every evening for 9 weeks after spending hours on end at the NICU when Sam was born.  The home that saw Sam cast his NG tube aside and finish his first bottle, that saw him sit and and crawl for the first time, where he recovered from his first four surgeries and in return was showered with litre upon litre of v-word secretions. Yuggghhhh! A house ain't a home till its received the eau de puke treatment, luckily Sam's already taken care of that in the new house.
 



Where Sam's passion for slides was born :)

Possibly the tallest tree in the neighbourhood. Stood more than 20 metres high and was easily visible way before we even neared our house, even for Sam. Proved invaluable on Sam's much-loved car trips as a marker that he could relax as we were near home.

We almost said our final goodbye's to the Ferocious Beast as well as the new owners surprised us (most pleasantly) by saying they'd be more than happy to have Max stay on with them. This was the plan up until last week and then the thought of having to leave him without even giving him a chance in the new place, somewhat tiny as it is, just seemed like giving up too quickly. So Max came across on Saturday and, although I am not sure how easily Max is adapting, Sam is loving having Max there to occasionally chat to through the gate while softly rubbing Max's fur.  Being the awesome people that they are, we've been assured that Max still has a home with the new owners if things don't work out here with him. 




So, since our dismal v-wording first attempt with Melatonin, we seem to have found a workable gameplan for Sam's sleeping for the time being, which is still all over the place.  There were two fantastic nights, one when Sam woke for the first time after 2am and the other after 5am, but the rest still filled with lots of disturbances and restlessness happening anything from every 2 hours to every 20 minutes.  The general pattern is that Sam falls asleep pretty much as (Sam's) normal.  But then within an hour the trouble starts either with him seeming to have an uncontrollably itchy skin mostly on his tummy, back and legs and/or rather violent twitches in his legs and very occasionally, in his arms.  The itchy skin is obviously because of his eczema but the twitchy legs is the tricky part. Even when Sam resorts to that horrid spinning, it starts with his legs and that's where the core of the spinning remains...with him rocking his body from side-to-side with his legs. After another trip to the doc, it has been agreed that Sam almost certainly has Restless Leg Syndrome I do vaguely remember this subject being discussed either on the RTS listserv or the FB group recently, indicating that there are other RTS sweeties struggling with RLS as well, sort of confirming the diagnosis.  Apparently RLS in adults is treated with the same medication as used by Parkinsons Disease sufferers but to Dr B's knowledge there's not much that can be done about paediatric RLS. Dr B also noted that on both Sam's scars from the TSC surgery and the removal of his right testicle, there's a section where the scar tissue has become tethered to the deep tissue underneath and thinks that these three issues, together with Sam's usual SPD challenges, are all contributing to his sleeplessness.  While there's unfortunately no remedy at this point for the RLS and problematic scars, we can at least treat the eczema with some Aterax for a while. A few nights ago I tried the Melatonin again and so far we've had no v-wording episodes and last night added the Aterax to the mix and, with the exception of waking twice for mere moments, Sam slept through till 7am this morning. Celebrations!!!  Of course the fact that I have just blogged about it will almost certainly guarantee that tonight will not be as successful *sigh*   On the upside, I don't think my body can handle that much sleep anymore...the day after Sam's straight sleep till 5am, I felt absolutely lame all over and really rather dopey...how I'd expect to feel after having had no sleep instead.  So it's really for my own good to have Sam slowly phase the good nights in, right? As long as I keep telling myself that, we'll be okay :-)

2 comments:

  1. I think someone mentioned the RLS to ME on the list last week!! She said they increased iron (?) to help? I'd be hesitant to do that without a doc's recommendation since it can increase constipation, though... I'm glad you guys seem to be on an upswing!!!

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  2. Aw, thanks. I'll go search through my mails. I did actually read the bit of increasing iron on my friend Google :) but agree 100% it should be run by Sam's paed first. Thanks Patty. Here's hoping you guys also have some answers soon with Stephen's sleep study (battling to leave comments on other blogs lately) Loved the pics, such a sweetie xxx

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