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)

Thursday, October 31, 2013

Tumblemania, Relocations....and poop

So at our paed appointment last Thursday we discovered that Sam's sole surviving little testicle has, in fact, checked out of Motel Scrotum and travelled up North :( Doc Paed does not seem all that concerned about it, hopefully it'll come back "home" on it's own...
Two things Doc Paed did seem concerned about were Sam's knees and Sam's rather very full-of-poop gut. Little pus-filled pimples have formed on Sam's knees from all of his knee-walking and with his completely refusing to use his walker lately, Sam is spending more and more time walking on his knees which causes the little pimples to break into little sores.  Doc Paed advised that the little open sores could become infected and the infection could then travel into Sam's joints. I tried sewing felt-filled patches onto his pants but a) the patches move too much as he crawls and flaps when self-stimming and b) it looks like its the actual friction between his skin and the fabric (regardless of how thick the fabric is) which is causing the problem.  So next solution...keeping Sam off his knees.  The first couple of days went relatively okay but Sam has become really frustrated at not being able to "walk"around as he's used to.  Also, for physiotherapy reasons and his forever tightening muscles and tendons, limiting his mobility is not the ideal solution.
So I decided to try modify Sam's walker, hoping that he would once again feel safe enough to spend some time in it...

...and it seems to have done the trick, to a degree. Despite Sam looking like he has one epic wedgey, the bit of cloth he can feel around him definitely makes him feel alot more secure and he's spent a fair amount of time in the walker over the past few days. Yesterday he and I even played a little walker soccer! From a physiotherapy point of view, providing Sam with a "crutch" is perhaps not the most suitable way of getting him to walk. But from a SPD point of view, sadly, as we get closer and closer to Sam's 5th birthday and with no really fabulous improvements with most of his anxieties and fears I think we're moving further and further away from Sam walking independantly one day.  So if having a little bit of security in his walker helps, so be it.  I'll give the fabric a rethink to find something more durable but without being uncomfortable. 
As for the poop - when Doc Paed examined Sam on Thursday, Sam instantly flinched when he touched Sam's tummy. An x-ray revealed that Sam's gut was absolutely filled to the...uuhhmm, brim (?)...with poop. So we've more than doubled his Movicol intake and used suppositories for two days, which is about as many as we'll get to use as that little butt instantly clinches shut now. Sam seemed to be doing quite well with more solid foods lately, but obviously his digestive system needs to catch up with his sensory we're back to very pureed foods. 
A long while ago Doc Paed prescribed a med called Neurontin for Sam, to help with his increasingly-forceful body bashing at night. I was a little sceptical about the Neurontin as when googling it, I read that it was initially intended to treat epilipsy.  But as Sam's body bashing became more distressful and his left hip started "clicking" again, which it hasn't done for some time I decided to give the Neurontin a try. 
Oh my hat!
The kid didn't move....I didn't sleep! I lay awake making sure he was breathing, occasionally turning him so that his body didn't cramp. #eyeroll  But on the 3rd morning, Sam woke up with the mother of all moods and Morning 4 only got worse.  Mentioned this to Doc Paed who quickly came up with an alternative...Clonidine. 
Oh my hat!
While the Neurontin helped Sam stay asleep and free from body bashing throughout the night, it didn't help him fall asleep and this is when Sam does his most damaging body bashing. It has been taking Sam as long as two to two-and-a-half hours to fall asleep sometimes.  We started the Clonidine on Monday evening and Sam has fallen asleep within 20 minutes every night so far.  Night 4 is usually the defining night, so let's see what happens tonight. 
Random Smurfy News : About a month ago, a friend gave Sam three *Mr Tumble : Something Special* dvd's.  Have you seen these? I can't say I found Justin Fletcher particularly entertaining in Jollywobbles and Justin's House...perhaps because I am just a teeny bit over the age group of the targeted audience? But in these particular movies, Justin works together with some pretty adorable children with special needs to create a fun way of learning, using Makaton throughout the movies. Sam is besotted.  He watches absolutely nothing Teletubbies, no Barney, no Tweenies...just Mr Tumble, for which he has formulated his own "sign' and has picked up many of the proper Makaton signs.  I'm almost a little disappointed that I hadn't started Sam with Makaton right from the beginning as he seems to be grasping these signs far more easily.

 Random Smurfy pic :

1 comment:

  1. Oh, Sam.... please, sweetie, stop giving your poor mama such a hard time! (((HUGS))) to all of you.