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)

Tuesday, October 26, 2010

Mountains to Molehills

I have not had the privilege of a complete Sunday church service for quite some time. For at least the past two months almost every service has been spent walking Sam up and down the foyer while trying to grasp snippets of sermon through the doors. So, this past Sunday, Chris offered to walk Sam outside while I got to listen to our Pastor - and it was the perfect Sunday to be present. The service was the second of a two-part sermon, largely about Psalm 34 ("I will extol the Lord at all times,...") and, as part of the service, our Pastor read an excerpt from the biography of James Hudson Taylor. Taylor writes while his young daughter, Grace, literally lay dying on a couch from meningitis just metres away from is the most heartbreaking and emotional writing, but Taylor remains at all times loyal and faithful to his Lord. Our minister struggled on several occasions to keep control of his own emotions which I found so amazing, that he allowed his own vulnerability to be seen by his congregation.

(James Hudson Taylor 1832 - 1905, was a British Protestant Christian who spent 51 years in China as a missionary. In his lifetime, he saw not only the passing of his daughter Grace but, from what I remember, at least two/three other children - including a son called Samuel - and then of his wife, Maria, whose death almost completely devastated him.)

Sam has been particularly fussy over the past few days...I first thought he might be getting ill again, but by the weekend noticed that in addition to the new tooth I saw cutting through last week he also has a set of molars cutting through as well (that's like ten teeth in four months - easy does it Sam). He is definitely a little mucousy though and his gag reflex seems to be back in full force, so when I fed him his lunch this afternoon he started coughing and after spluttering out several mouthfulls, next thing up came his previous bottle and all his food. Breathe. Breathe. Breathe again...wipe up vomit, change Sam, change me.....try again. Second attempt at lunch stayed down. Had another bottle and some tea later. Come supper time (where I pureed PUREED food just to make sure there were no gag-triggers)...and up came semi-digested milk, tea and freshly swallowed supper. Breathe. Breathe. Fight back tears. Breathe. Fight back tears. Wipe up vomit (this time with Chris's help). Change. Try again. Oh my gosh - isn't it funny how quickly we take progress and improvement for granted? Thankfully, before I could surrender myself to a full-blown sobbing, Sam (obviously in an attempt to redeem himself) started babbling in his heart-melting way and threw in a spectacular attemp at clapping his hands. As I trudged up the stairs to prepare Sam's bath, feeling all sorry for myself I tried some self-therapy....Really woman! Build a bridge! A couple of months ago it was more the daily norm for his milk and the tiny bit of solids he was eating then, to come up than stay in his tummy and after one day's vomiting you're moping around like it's the end of the world. Felt a little better, not much. (Note to self - fire therapist, she's just no darn good). Then, while the tsunami that is Sam, was having his bath (together with our bed, the floor, the curtains, the neighbour's three houses down) I thought about old Hudson Taylor and the divine strength of his faith and my mountain became a molehill.

Still my rattiness is not completely unjustified...I am hoping that Sam is not getting ill as it is Sam's RTS sister, Payton's first birthday party on Saturday morning and we have been looking forward to our three RTS angels (Sam, Payton & Mattie) all being together for the first time, for months, as well as finally meeting Mattie's baby brother, Nic, for the first time!

Sam had an appointment with the urologist Prof F referred us to on Wednesday, Dr J. He said the normal procedure to diagnose a neuropathic/genic bladder (where they insert a catheter into the bladder, inject a dye and then take several x-rays over a 45min period) is not always conclusive in such a small baby and, as the procedure is pretty uncomfortable and would require Sam to be put under anaesthetic, he was not certain if this is the route to go, although he does appreciate that Prof F needs a "benchmark" from which to monitor Sam's bladder after the tethered spinal cord surgery, in order to determine whether the bladder's condition is improving or deteriorating. So, as Prof F is currently overseas, Dr J has sent him an email to which we are hoping he will reply before Sam's next appointment with him on 22 November.

"All our difficulties are only platforms for the manifestations of His grace, power and love"
James Hudson Taylor

Friday, October 22, 2010

The most painful snack EVER!!!

Up until recently we suspected that Sam had extremely poor hand-eye coordination as he could not seem to lift an object, mainly a food item, to his mouth which meant whenever we wanted to give him a snack we would have to hold the chip or cookie while Sam, paintstakingly-slowly, "munched" away. I even mentioned it to his PT. However, when he developed his "chew-on-anything-and-everything" habit he seemed to have absolutely no difficulties holding the blanket/feeding-towel/paper/sock/shoe, etc to his mouth and so it became quite apparent that our little smurf was just a little lazy - why do it myself if there's someone else prepared to do it for me? So we decided to test our theory and put his favourite snack (cheese puffs) in a bowl in front of him to see what he would do and sure enough, after a few moments of utter bewilderment he lifted a chip to his mouth and took a bite. The first few attempts were rather shaky as after each bite he would let the chip fall, but he's become much more experienced now (even though that little angulated thumb still occasionally gets un unexpected nip). I can say for sure that he is NOT loving this new push of independence and it either seemed to affect the flavour of the cheese puffs or caused Sam some unexplained form of pain, if these pics are anything to go by...

Really Mom? Is this totally necessary? You know how I hate change!!

 Well this is what I think of your idea! To my amusement though, after emptying the bowl of chips onto the floor and mushing them around on the carpet a bit...he actually tried to pick them up and put them back into the bowl again (something I've been trying to get him to do with his shapes bucket for ages).

Sam is still keen to tolerate some time in the crawl-position, although usually collapses after trying to move more than one or two hands forward. But he'll stay in this position for ages, with a little rocking thrown in every now and again.

This (to our posture's dismay) is still his favourite thing to do at the moment. And of course it makes so many activities more accessible, like unpacking cupboards, chasing the cat, kicking the ball (which he's remarkably good at).

The two-headed "monster" which came by on Wednesday evening to terrorise our family! No, I do not know what inspired this idea, nor do I want to know :-)

For the news that we (thankfully) did not catch on'll understand why soon. On Sunday morning we decided to go out for an early breakfast and took Sam's bottle along to at least keep him occupied for the first five minutes of the meal. Sam promptly finished his bottle and immediately started with his insistent jumping. Ordinarily we dissuade from jumping straight after a bottle, but what Sam wants to do...Sam does. So the jumping continued and eventually our food came. I gave Sam a tiny bit of my flapjack to try and distract him from the jumping...but alas full bottle + reflux + jumping + gag reflex = EPIC ERUPTION! Sam's entire bottle came spewing out all of myself, Sam and Mugg & Bean's floor. And we couldn't just get up and leave because our order had only just just arrived. So they politely brought me a bucket of water with a rag to try and clean what I could of the partially-digested nestargel formula off my dress and moved us to another table. It just had to happen though - I am surprised it took this long.

Sam saw a urologist on Wednesday who is debating with the neurosurgeon whether to do a something-something urethrogram prior to Sam's surgery (tentatively scheduled for the first week of December). We are seeing Prof F on the 22 November again to finalise everything. 

Wednesday, October 13, 2010

And surgery it be

So our appointment with Prof F on Monday went well...not "well" as in Yeah! No Surgery! but "well" as in Prof did a thorough examination of Sam (as always - much to Samuel's disappointment) and, after collaborating with his team for quite some time, explained to us in layman's terms the pro's and con's of the operation. Basically, the tethered cord has already caused some irreversible neurological damage in just these short sixteen months, so the thought of leaving it unoperated on just to allow further damage is so much more terrifying than the thought of Sam having another surgery so soon. For now though, Prof F is overseas and only returning in six weeks so we will confirm a date shortly after his return. In the meantime, Sam is going to see a urologist next Wednesday, to fully assess his bladder issues - not too sure how this is done with a sixteen month old smurf, but should prove fairly entertaining.

Sam has been a little miz today, first thought it might be because of tooth no. 8 which just started showing itself earlier this morning...but by this evening, when he became really irritable and no amount of dancing, singing or jumping could cheer him up, I started wondering if he isn't starting to come down with something...I mean, in all fairness, it has been a whole like six/seven weeks since he last had the chest and kidney infection so he's due anytime now for the bi-monthly illness. Both Chris and I are also feeling a little under the weather, so it's not impossible that Sam's feeling the same way but without having the ability to whinge and moan about it as clearly as Mom and Dad!

Meg had her athletics day today and managed to survive the actual athletics without any major accidents (which is pretty impressive as it seems almost impossible for her to go twenty-four hours without hurting herself) but, at the end of the day, she spotted me driving up to the parking lot to fetch her and tried to run along the fence to "catch up" to the car and, in the process of trying to keep the car in sight, tripped and took a major dive into the concrete which has left her with these really attractive deep purple and red wounds on both arms, both knees and an extra big one on her right side. At least in Winter most of her bruises..and her bruises' bruises...get covered in long pants but when it starts warming up, like now, it's pretty frightening going out in public with her wearing short pants or a skirt/dress because at any time you expect to hear someone stifling a hushed phone call to the child protection unit to report the obvious abuse this little girl must be going through to sustain such marks and bruises. We weren't home long before she fell down the ladder from her bunkbed...tsk tsk. And do you think it makes her more cautious? Not.A.Chance!! I cannot count the times I have caught her balancing on the edge of that bunk bed trying to hang paper butterflies from the ceiling fan, hanging over balconey railings, climbing on top of cars, trying to balance on the beam of wood from which the swing set hangs, balancing tip-toe and soaking wet on the edge of the bathtub trying to take something off the top shelf in the bathroom mid-wash. One night, almost two years ago, Chris and I heard this blood-curdling scream which at first we thought were the neighbourhood cat's fighting as it almost didn't sound human...but next thing Meg came out of her room with a mouth full of blood...AND CHICKEN, as while munching on her dinner (which is always finished like a half hour after the rest of the family) she had been doing somersaults on her bed and misjudged and fallen flat on her mouth...mid-chew. So an emergency room and massively swollen, teeth pierced lip later...and, before the blood on her lip had barely dried, she was at it again.

Let's just hope Sam doesn't get any ideas from her...hee hee!

Sunday, October 10, 2010

A very busy squirmey wormey.......!

Wow - so I wasn't even sure I was going to lay eyes...or hands...on this pc again before it came time to announce that Sam just turned 21! Our little boy has become extremely busy and just wants to be on the go all the time, which is great....if you're doing the "going" on your own. But when it's Mom (mostly) that's having to be the "vehicle" upon which you do your going then it becomes a little more taxing (pardon the pun). Over the past week and a bit Sam has progressively become more and more that "little boy" that we so often see lurking behind that mischievous smile of his....and oh boy, do I see heaps of mischief ahead of us. Firstly, it seems even the mere mention of a possible surgery seems to have jolted Sam into action as all of a sudden his sitting and "crawling" has improved remarkably. He can now sit unsupported for a good ten minutes. Although he cannot fully bring himself up into the sitting position, if he's lying on a bit of a slant he can actually pull himself up into a sitting position - those little tummy muscles are working overtime and although when he begins leaning a little to one side he still neglects to put an arm out to support himself, he just strains those little abs and somehow manages to bring himself upright's quite adorable watching him and I don't doubt he's going to have a sixpack that Dad would die for! He can also, when sitting between our legs, move from a sitting position into the crawling position, supporting his tummy on our thighs and can move back again from there into the sitting position. He still ADORES jumping and is developing quite the little calf muscles to prove it and loves "walking", which is basically Sam positioned in front of me holding onto my hands and "walking". I say "walking" because unfortunately that little turned-in left foot of his quite severely hinders his stepping at the moment, making it more of a step...crab-like drag....step motion. We are scheduled to meet with his orthopaed in January again and although I considered moving it forward in case his little Sam "swagger" becomes quite habit forming, we are just concentrating on the tethered spinal cord situation for now and will first see that through before we move onto the next issue. Still, swagger or no swagger, Sam is extremely sturdy on his little legs and sometimes even gets irritated with me holding his hands and tries to shake them away. Of course, him being the incredibly tall little 16 month old that he is, his standing position puts his hands at almost the exact same level as Belle aka Kitty which, combined with Sam's still-worrying love for pulling hair, makes for many entertaining moments....for Sam that is, not so much "Kitty".

There's more....there's more....he's making so many new sounds and you can just see that desire for communication simply bursting out of him and, as I think I've mentioned before, he even has different "voices" reserved for different activities like animal conversations, keyboard playing, hair pulling, "throwing" toys, etc. And one final new "development"...Sam has gone from absolutely LOATHING being on his stomach to loving it so much that trying to change him or dress him has become so tricky that I sometimes just leave him "as is" until he's gotten his "crawling" over and done with and then try again later (unless it's a nappy change that is...unfortunately we then have to persevere). But this flip (literally) in behaviour is so so welcoming that it's hard to complain.

Sam has had seven teeth come through since mid-June and his mouth really seems to be driving him pretty crazy as a result. He will chew on anything...ANYTHING! I was standing by the window with him earlier today and next thing he had grabbed the curtains and was chewing on that! 

On to the last resort chewable items, which is his clothes. We have to try keep a bib on him lately, not to help manage the dribbling, but to prevent him from chewing on his actual sweater and sleeves.

 Now, here we have Sam's version of crawling and let me tell you, it's really quite an exhausting exercise and really rather odd as he insists on his arms and hands being under his stomach while he's doing his squirmey wormey exercise. So it first takes some time to get those hands to the side....
 Then he has to lift his bum to get them securely underneath.....

And then he pushes with his legs, squishing that little face solidly down while the little bum stays in the air...presumably for navigational purposes? Who knows!
And so the whole process begins again...and believe it or not, he manages to cover a considerable amount of "ground" this way. For obvious reasons, we've had to restrict his crawling to mainly the bed in order to avoid carpet burns on his face!!
As weird as what the whole process is for us....Sam absolutely loves that he is now a little more mobile and is always quite pleased with himself after doing a few laps of the bed!

A random adoring smile just for Dad!

So, it's been a physically exhausting and busy week, but for all the right reasons, not the usual cause being back-to-back specialist appointments or hospital stays, but filled with the most encouraging, heart-warming, beautiful moments of watching our Sam telling us in now uncertain terms that although his conquests sometimes seem few and far is sometimes many and all at once!

In addition to all the above excitement, Luke celebrated his 17th birthday on Thursday. Yikes! Maybe my physial exhaustion is not completely detached from the psychological disbelief that I now have a seventeen year old son! Moving swiftly along......

We are seeing a professor of paediatric neurosurgery tomorrow morning at 11am so, hopefully, by this time tomorrow we will also know where we stand with Sam's tethered spinal cord story.