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)

Friday, April 27, 2012

The Smurfy Swagger...this is how I roll!

With my third birthday just around the corner, I know that Mom and Dad often feel a little sad about me not walking yet.  Gosh, I even feel sad sometimes. I love being able to get around on my own but sometimes I need one or both of my hands while I'm crawling...which is why I've pretty much mastered my version of "walking".  It's definitely not as smurfy as walking on my feet would be but right now that's just way too scary for me. I know that, if I fall, I only have 80cm between my head and the ground...but to me it may as well be 8 metres. And I also know that, if I fall, I might only cry for a few minutes after getting a bump on the head...but to me the pain feels more like a blow from a I'll probably cry a little longer (and perhaps even share a little regurgitated Pedisure). Even though there's lots of space between the different pieces of furniture in our home, to me if feels like I'm trying to out maneuver closing-in tables and chairs, which tables and chairs appear as huge as towering skyscrapers instead of being barely taller than my own head.

I definitely feel safer on my knees for now...and I heard Mom checking with Heidi if it was okay for me to move around like this and Heidi said it was really quite alright...that even though I am only on my knees, I still need to balance and there's still some rotation and shoulder-hip-dislocating happening...or was that dissociation...definitely something with a "dis"! And it does make for easier carrying of items which need to be thrown on the kitchen floor for noisemaking purposes...and much better aiming too.

Check me out :

I can even walk and read...

...not even my warm, fleecey dinosaur gown stops me.

Taking my wooden pig for a walk ("pig" is one of the latest signs I've learnt)

Taking Barney for a walk too :)

There isn't a picture of it yet but if I'm really excited about getting somewhere or to someone quickly, I can even run xxx

Friday, April 20, 2012

Let's play pretend...

...we'll pretend that this is the first time I'm going to throw this little "brag"out there, because just about four months ago I bragged about this very same thing and barely a week later it became victim to Murphy ;)

So (as posted before), Sam has become quite insistent on eating whatever we have on our plates, as opposed to his pureed food. Slowly I've been testing (again) what he can tolerate without gagging. Wednesday just happened to be one really good day, sensory speaking, as Sam had a chocolate spread sarmie for lunch, a really small portion of hot dog (including the vienna, which usually always makes him gag) and then finished off with a generous helping of macaroni and cheese for supper - completely unpureed. And without a single gag.

Now that I sit and think about it, Sam's had quite a good week with "small" victories all over the if any victory could ever really be small. Rewinding back to Tuesday's OT session, for the first time despite many attempts, Sam eventually managed to crawl through the little play tunnel on his own and out into the attached tent. Granted, after getting stuck halfway through when the spatial change from tunnel to tent frightened him, we had to encourage him along by placing his iPad in the tent...but it's still a huge achievement for Sam. Wednesday's PT session played out pretty much the same as every PT session with Sam crying unconsoleably through every minute and me leaving through the waiting room amidst several looks of sympathy but somehow, through all the tears, Heidi still managed to work Sam through most of his routine while I knelt, towel in hand, wiping away the tears. And then of course, the following day, came the eating victory...even if it happens to just be a once-in-a-while occasion for now.

Sam had his dentist appointment yesterday morning and then we had a full afternoon ahead of us with Meg's hockey match and then ballet practice. I was a little anxious about how Sam was going to tolerate the afternoon's activities if he needed some work done on his teeth just hours before that, especially as he wasn't going to be able to have much of a sleep before we headed off to the school. The plan was to somehow dance/sing Sam through the dentist consultation hopefully managing to distract him as much as possible, then quickly dance/sing him to sleep for a short nap, then head off to the school to carry out a swift drive-by child-grabbing and then on to Panorama while Meg ate and changed clothes in the car, entertain Sam with iPad for duration of hockey match then as the last whistle blew charge across the field with Sam and iPad under one arm, to grab Meg and kit bag under the arm (which is really quite funny because both Meg AND Sam could fit INTO the kit bag), charge off back to Gene Louw...execute a cautious but again swift drive-by child-dropping and head off home with a huge sigh thanks to Brampies, who was going to collect Meg from ballet for me to spare us another hour of hanging around.  The plan suffered a bit of a blow on Wednesday evening when I injured my ankle while braving peak hour traffic on the busiest highway in town, to save a lost and bewildered puppy caught in between two high-paced, unrelentless streams of cars, almost guaranteeing him a horrible and brutal death!!!  Okay, that might not be entirely true...but it certainly sounds a lot more charming than me misjudging a step because of not being able to see over the laundry basket I was carrying.

Sam's dentist appointment with Dr Lim could not have gone any better...she walked into our home as warm and friendly as if she was a regular house friend, immediately putting us all at ease...and went to sit on the floor next to Sam to speak to him, which of course he adores - Sam loves attention, especially when its from someone who's prepared to come down to his level to communicate with him. So the actual examination took literally a couple of minutes and Sam did cry and felt a bit sorry for himself for a while after but it was all so worthwhile when Dr Lim told us that, despite the chipped tooth and a small cavity on Sam's one canine, his teeth actually look really good. She assured me that the chipped tooth is not causing Sam any sort of pain or discomfort and that the cavity is so tiny that it was not going to give Sam any trouble for a long while, at least until we see her again in a year. Yes, a year - because there's no treatment that needs to be carried when Sam has hit foot surgery in September.

Two other really helpful bits of information which Dr Lim shared was that firstly Sam's gums are terribly swollen and red with his molars still trying to come through (his teeth take so incredibly long to cut) which is more than likely the reason for his restless sleeping at night...and he still has another four to go. And also quite interesting was how bad nighttime mouth-breathing can be for your teeth...and, despite the adenoidectomy, Sam still mostly breaths through his mouth at night. Anyway, the whole visit was an absolute pleasure, confirmed by Sam who held out his hand to Dr Lim and whined when she left.  I highly recommend Dr Lim to any parent of a special needs child...her caring and comforting manner alone is reason enough to seek her consult, only made more valuable by the fact that she is prepared to make house calls in order to further make the experience less traumatic for the child. I have to, again, thank our Aunty Anthea for showing us to her in the first place xxx

The rest of the afternoon went by just as smoothly with the help of some Cataflam and Brampies, who we dragged with us to the hockey match so that I could avoid having to carry Sam around the school at first until we knew where the Genies were playing. Once the match began, Sam sat good as gold on my lap and watched video's of Meg on my phone and even with all the in-and-out of the car and driving, hardly moaned at all. 

This morning I managed to transition Sam from my lap into an, almost, unsupported sitting position on the floor where he stayed for at least about ten minutes playing, with just his arm leaning on my leg as reassurance that I was still there. When he seemed ready to move, he slowly (and maybe a little shakily) pulled himself into a crawling position with just a little help from me. This, so far, is probably the most significant victory for me. The eating thing is a little frustrating but Sam (as with most of his RTS siblings) has never done great with it so when he regresses back to pureed food I still don't feel like we've lost anything. But the total regression from being able to sit and transition for sitting to crawling and back again...that's been really quite difficult to move past. And as Sam goes longer and longer without making some progress back to that milestone (which took him 18 months to master in the first place) I grow more and more worried about how more difficult it's going to be working our way back to that place. So, we pray that this morning's little breakthrough is the little preview of light (or, in Sam's case...iPad) at the end of this particular tunnel.

"Every child is gifted. They just unwrap their packages at different times"  Unknown.

Monday, April 16, 2012

Roses are red,

Little smurfs are blue!
I'm almost certain
That something's on the brew!

Something is most definitely bugging our little smurf :(  He has been really moaney and whingey this past week, but most frustrating is his sleeplessness. We've gone through this before a few months ago where he spends hours upon hours at night thrashing and whipping himself around. I cannot leave him in his cot because he inevitably gets hurt, so he lands up in the bed which means I spend a large part of the night covering my head for protection...kinda like in those war movies when the soldiers crouch down, arms draped over their heads, quivering in fear...except it's little hands and arms I'm trying to avoid and not grenade-debris. Mmmm...which brings to mind helmets - perhaps worth a consideration? Although I can't imagine how comfortable I'm going to be sleeping with a helmet on. By Saturday I was pretty sure I'd be waking up....uhhhh, let's rephrase that...getting up ("waking" would imply that something remotely resembling sleep takes place) with a blue eye one morning in the near future - watch this space!  So again we're faced with the frustration of not having Sam be able to tell us what it is that's irritating him, if he has any pain or discomfort...or whatever. I had an idea it could be his ears because the last time he carried on like this at night, his ears were filled with fluid. But our RTS kiddies have these really awesome in-your-face ear canals and if you have a small and powerful enough little light, you can actually see quite a decent amount of what's going on in there, although obviously not entirely what condition the eardrum is in. I could see, though, that the little grommet/tube is still securely in place on both sides, there's no fluid or anything leaking out which presumably would happen if there was something funky happening in those ears. Sam's tonsils are looking much better than they have in a long while, still slightly enlarged but not at all red and minus those little white follicles. Urine tests check out fine - so I am good and solid stumped (Yes, again)...and can do nothing more than just wait it out and hope that whatever the problem is, it will either blow over on its own or reach a point (like a fever or obvious infection) where we now know for sure that Sam has a good reason to have taken on his Grumpy Smurf persona again.

Grumpy or not, we headed off to Haven of Hope on Saturday morning...moaney, whingey smurf in tow (or should I rather say...on arm) with the hope that perhaps a little interaction with his equine friends might improve Sam's mood. However, Sam seemed to prefer staying in the car watching his Teletubbies dvd (oh the joy...just can't escape those "hawwo-ing" little creatures) while Meg and Chrisna had an awesome time with the beautiful Prince and rather-cheeky Thembi. Every time I ventured near one of the horses to just say "Hi" and have a bit of a petting, Sam protested and, ironically enough, the only one he seemed willing to have anything to do with was Strawberry the pony. In Sam's defense, the wind was howling quite hectically and the weather was a little miz so perhaps he just wasn't in the mood to be outside...or inside...or awake...or asleep...or left to entertain himself...!!!! H-E-L-P!!!  (Hee Hee)  Hopefully our next visit to HOH sees little smurf in a much better mood!

Surprisingly enough Sam had a relatively peaceful sleep on Saturday night and only woke up after 8am...which was wonderful for me, but not so great for the little doll Sam kidnapped from our church's cryroom last Sunday, which we intended returning this weekend. The good news though, despite Sam's clingy and challenging mood continuing through the rest of the weekend including last night, is that I will soon have my rugby-player physique back...particularly the neck and little smurf (who just doesn't seem so "little" when you're carrying him around on your arm for a good eight to ten hours a day) has decided to revert to his original method of falling asleep - which is me shushing him in my aching arms, singing horrendous, out-of-breath renditions of "The-Wheels-on-the-Bus" or "Mocking Bird". Nothing like a little regression to give you a swift kickeroo on the rearend as a reminder to completely and totally cherish progress when it happens.

Couch-Potato Smurf

Soon-to-be-renamed Spice!

The latest arrival at Haven of Hope, all the way from Stilbaai - Knight!

Thembi and Dollie watching Chris watch them...while waiting for the girls to return from their ride

A brief moment, en route to see Strawberry, where Sam allowed Chris to carry him.
He looks so tiny for a little boy who is turning 3 years old in less than a month :)

So, that's been our week in a nutshell - obviously with all the usual therapies and, now that the school term has started again, afternoon activities for Meg and more of the same for this week. On Thursday, Sam has a dentist appointment which I am really looking forward to. Yes...really! Sam's teeth have taken a real beating with all his antibiotics and acid reflux and lost a large part of his front tooth when doing some mouth-stimming on Nemo (Sushi anyone?). I have been dreading the inevitable dentist's appointment but after spending ages Googling and asking both nearby special needs schools and some of Sam's medical team for a referral to a dentist who specialises in children and has experience with special needs kids, Sam's Aunty Anthea referred us to a lovely lady, Dr Shirley Lim, who is coming out all the way from Hout Bay to see Sam in the comfort and (taking Sam's SPD into consideration) security of our home. Once Dr Lim has assessed what treatment Sam requires, she has also advised that when Sam has his foot surgery at N1 City in September she would be prepared to travel out again to do the necessary work while Sam is in theatre - so love avoiding unnecessary anaesthetics!

Friday, April 6, 2012

Busy Smurf

Little Conqueror Smurf has been somewhat busy during the past week. On Saturday morning, now that Sam's health has been playing along, we paid a long-awaited visit to Haven of Hope Equine Aid Centre. We carried with us juice bottles, sunblock, Sam's iPad (of course - we seldom go anywhere without it nowadays) and the very realistic expectation that Samuel might only last a half hour on the farm before becoming niggley, forcing us to come home. The first hour was spent re-introducing Sam to the farm and especially Strawberry, the little pony we hoped Sam would brave a ride on :

But while Sam did manage a very strained, anxious attempt at sitting on Strawberry he did not seem at all comfortable and quickly wanted to get off again. He even refused to pet her, despite lots of encouragement. We kind of resigned ourselves to the fact that the only ones benefitting from any riding that morning would be Meghan and Chrisna and Sam and I settled under the gazebo with the iPad to pass the time away.

After a little while I went over to say hello to "the Prince"Jabu and quite spontaneously and without any prompting Sam stretched out his hand to touch the beautiful creature...

...and without any hesitation joined me on a short ride on the Prince, even occasionally stretching out his hand to pet the horse's mane (and suprisingly enough not even once attempting to pull it).

Being able to just get out of the house and enjoy the company of the horses as well as Aunty Juanita, Aunty Maryke and another lovely lady named Tanya, who took to Sam in a very special way, was awesome...we hope to make it out to Haven of Hope again really soon :)

With all having gone so well on Saturday, on Sunday morning we decided to push our luck and try and attend church as a family for the first time since the 4th December. Again, Sam surprised us and made it through the entire service with the help of his (muted) iPad which was wonderfully tolerated by the kind people sitting close to us. Last night our church hosted a Passover Dinner which we attended with Sam, who was an absolute little star the whole evening and charmingly smiled at anyone who happened to give him even the slightest bit of attention. By this morning Sam seems a little unsettled and has had a very restless night so perhaps all the changes to his routine are now taking their toll, perhaps calling for a quiet few days over the next week or so, but we can hardly complain. Sam's system has most definitely kept itself strong against the tummy bug that Meghan and I had which means Sam has now had about three consecutive "illness-free" weeks which for some might not seem much reason for celebration, but here in Smurfville it most certainly is not only reason for celebration...but reason to be truly thankful for all the prayers which are still being said daily for Samuel.

There has been quite a bit of talk recently on the RTS listserv regarding one of the more worrying side effects of the longterm use of Losec (Omeprazole) being that it prohibits the efficient absorption of Vitamin D, resulting in weakened bones which for some of Sam's RTS siblings, has proven quite troublesome. Even before this matter came up recently, I have never felt completely comfortable with the amount of medication Sam has on a daily basis and quite some time ago (probably about 18months) actually did try and wean Sam off the Losec, which promptly resulted in the one and only time that Samuel ever suffered from aspirated pneumonia. Apart from that short break, Sam has effectively been on Losec for a good two-and-a-half years so I thought it might be a good time to consider another attempt at weaning him off, perhaps with the help of a natural remedy this time. Aloe Vera Dew was strongly recommended as a good alternative by most of the moms on the listserv, most of whom are based overseas though, so when we went off in search of the Aloe Vera Dew the closest alternative we were offered was Aloe Vera juice of which 250mls of the bitter liquid has to be taken at a time...not going to happen with our Pediasure-only drinking little man. As a last resort, we took a super-short visit to a not-so-local shopping centre last week.  Super short because while our travelling time was approximately 30 mins, Samuel lasted a total of about 3 minutes in the actual centre.  Shopping centres are just one of those places where, healthy or not, Sam will struggle to cope...and quite understandably as I can barely tolerate them myself and (as far as I know) I don't have anything near the amount of sensory issues Sam has. Anyway, despite having to leave early, the trip seemed worth the drive as a natural pharmacist recommended something called Iberogast as a natural alternative to the Losec. Before beginning the weaning-off process, I thought I would first use the Iberogast in conjunction with the Losec to first make sure Sam's system will tolerate it. Wednesday afternoon Sam's tummy was making some really strange noises and rumblings and he's not eating and drinking 100% so now I've stopped the Iberogast again, will wait another day or two to see if Sam's tummy recovers and then will try and introduce it again, in case it is something else that is ailing Sam. If all else fails I'll probably persevere with the Losec a little longer and then towards the end of the year, by which time Sam will have been on it for just over 3 years, will try weaning him off without an alternative. The other option is another barium swallow study which might just surprise us by showing that Sam has managed to outgrow the reflux, but instinct tells me he does still have at least a degree of it at this point and, with Sam's foot surgery in September, I am desperate to keep all medical procedures in the interim to the absolute minimum - unless life threatening, of course. But there are many of Sam's RTS siblings who have been on Omeprazole for way longer than Sam so I don't believe that prolonging its use by another six months or so is going to make that much of a difference now. To be on the safe side, I will mention all of this to Sam's orthopaed when we see him in a few weeks time.

Tuesday morning sees the start of the second school term and we jump straight back into OT on Tuesday morning as well (after bunking OT last week on account of my birthday) but in the meantime Smurfville wishes each and every one of our readers a Blessed and safe Passover weekend xxx