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)

Sunday, February 5, 2012

Post Op : Day 2

Today started off hot and sticky (and not only because of the daily temps hanging around the high 30's) at about 2am with me trying to give a super sleepy smurf some painmeds. On Friday evening, because he'd had the local anaesthetic into the wound and an additional suppository in the late afternoon, I opted to let Sam sleep through instead of trying to wake him to give him something for pain. So when he woke up yesterday morning, it was without the benefit of any painmeds and he cried bitterly for close to an hour (as mentioned in yesterday's post) as it took me a while to calm him down enough to get him to swallow something. While suppositories are obviously much more effective, we are usually quite lucky to manage two or three before he starts flatly refusing them by screaming and fighting when we try and we definitely don't want him squirming and struggling at the moment, so we try and reserve the suppositories for the more needy times like at night.

I decided that I would give Sam something during the night so that he didn't wake up to such intense pain again and when he started whining, around 2am, every time he shifted position I knew his meds were already starting to wear off. It would have been wonderful for me to be able to wake little smurf up to explain to him why I was going to be squirting some vile tasting stuff into his mouth at such an horrendous hour, but obviously this is not the case (although I do still find myself explaining and reasoning with know, just in case). Now, take into consideration the already challenging swallow issues due to how attached Sam becomes to the medication, food or whatever that gets put into his mouth and finds it, like quite a few of his RTS brothers and sisters, quite difficult to have to part with said medication, food or whatever....and add to it the even more entertaining challenge of doing it while Sam is not quite awake! Again it took close to an hour to administer the meds but this time not because he was crying, because he kept going off to sleep with a mouthful of particularly sticky liquid which would inevitably land up dribbling out of his mouth.  It is really quite amazing how he does not have the natural reflex to swallow...even if I put something right at the back of his tongue...almost in his throat, he still quite often sort of forgets to swallow. There have been moments when I've been feeding him and I'll give him a spoon of food and, in the hope that another offered spoonful will initiate some swallowing, put another to his mouth but instead he will simply open his mouth to accept the next mouthful...and then inevitably gag. Even as I sit typing this I find myself swallowing continuously just thinking about how irritating it could be.

Tonight we have administered the suppository as late as possible. Hopefully it will see Sam through till about 6am when I can rather wake him with a bottle and then give some more pain meds. For the most part Sam is still being quite cautious about what he does, although I can see he is becoming more and more frustrated at just lying down or sitting still. He did try crawling a little on the bed this afternoon during the hour it took for us to try and get him to take a nap (which nap then lasted a glorious two hours) but although he was quite happy to be on all fours, he moved very slowly and carefully and after flinching a couple of times when he must have hurt himself a little, he quite willingly opted to rather lie down again.

We've had one or two vomit episodes today and I am not entirely sure what it might have been caused by. Sam's temp was up again a bit so perhaps the viral tummy bug he had right up until Thursday evening is still hovering around. Perhaps it's just the painmeds playing havoc on his stomach. Or it could well be due to the fact that he hasn't had a bowel movement since Thursday and that, as many of you already know, can be a major aggravation where reflux and digestive issues are concerned. I have upped Sam's Movicol dosage for a while but am not too sure how helpful this will be as there could well be another cause for the absent bowel's just a little more funny - and that is that Sam sort of has a usual BM-passing "stance" and it's almost always when he's on all fours...and with him currently not being able to "assume the position" he might just be resisting the urge. Yes, that certainly does smack of smurf - he does so like sticking to his "normals". So tomorrow we are definitely going to be doing some crawling around I think, as long as I time it nicely after a dose of painmeds, and with any luck we'll have sorted that one out.

Just for a bit of change I put Sam in his swing with a cushion positioned strategically underneath to prevent him from his usual, fairly wild, swinging. He seemed quite comfortable and painfree so eventually he was even allowed some actual swinging (if I remember correctly, he was actually holding in a mouthful of veggies at the time).

With Sam's hygiene routine relying solely on bed baths at the moment, his hair is starting to look a little funky. I do what I can with a sponge on that mop, but it's obviously not as effective as the real thing. Having had to resort to the same thing last time, I had every intention of simply shaving Sam's head the evening before the operation but then, with his being ill at the time, decided not to.

Sam's favourite activity at the moment...his iPad. In fact, most days we have to hide the iPad every now and again so that we can move through the house without his inevitable protesting when he spots it and we aren't able to play. The fact that he has taken to kissing the screen of the iPad (with or without a mouthful of something) and has also become quite skilled at choosing what activity he wants to do (which sometimes includes drafting gibberish emails, deleting and/or taking photo's, etc) we try and make sure that he is never alone with the iPad anymore. And, certainly not the least important factor, for some extremely odd reason when Samuel is finished playing with something (whether it be a book, toy or yes, even the iPad) he has to throw it down instead of simply setting it aside.

But hey, if it wasn't a little "odd" just wouldn't be smurf.

1 comment:

  1. So glad he's recovering well! I can understand how you don't know whether to go forward or not...praise God for his guidance!