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)

Tuesday, November 29, 2011

From mincemeat to unexpected blessings!

Recently a very good friend shared that she was feeling spiritually "battle weary", something I too have felt recently. I was a little taken aback...this friend is the essence of all that is good and righteous, filled with endless patience, compassion and love. I thought to myself, if this friend is battle weary then I must be spiritual mincemeat! Although we face the usual challenges most special needs families encounter, these challenges have not alone contributed to my weariness. There have been countless reports of abuse and assault of chilren and special needs people over the past couple of weeks which have made me question whether putting Samuel into any special needs facility at any point is even something to consider anymore, at least while he is non-communicative (which I am sure he will be for some time). There was the devastating story about baby Michael Connor who, although born normal, was rendered blind, brain-damaged and a quadriplegic...a state into which his mother beat him over a period of months, from the age of three months, and for which neither her nor his father are receiving anything remotely resembling a just punishment. When a reporter followed the mother leaving the sentencing hearing to her car, she retorted, in a hostile manner,  "Get a life!"

My heart sank. I vented to the heavens, I vented to my poor old dad (who was, up until this point, embracing his new-found spiritual curiosity)...where is the Lord's presence? I argued with Him that He is going to lose this world before any rapture or the coming of any Kingdom. With me leaving very little room for anyone else to have a say, I have to confess that it was very much a one-sided argument...or so I thought :)

Yesterday morning I received a phone call from our local radio station, Kfm  asking me to hold on for a call, after which the DJ, Ryan, and my sister, Cammy, both came on the line. After an extremely emotional introduction to our story by Ryan, followed by an equally emotional contribution from Cammy, Kfm added another caller to the conversation. John van der Westhuizen from Lancewood Cheese shared with us that Lancewood was going to sponsor basically all of Sam's speech and physio therapy for the next year! My first thought was - my conversation with Him had not been so one-sided after all! Okay, honestly, that might have been my second thought....my first thought was OH MY WORD! WHY AM I SOUNDING LIKE SUCH A NINNY OVER THE RADIO!

What an awesome ending to a year I have been otherwise longing to see the back of! I don't think the problem is that the Lord's presence decreases, but rather that we really do become THAT battle weary that we no longer have the same amount of strength and passion to search as carefully and notice as clearly when we do come across it. As I read recently (and have possibly posted before) it is not the Lord that leaves us, but us that leaves the Lord!

So the sponsorship from Lancewood is awesome, it will certainly ease our financial burden over the next year and how wonderful that there are still such giving people and organisations out there. But even more awesome is the realisation that firstly, my sister thinks so highly of the kind of mother I am to Sam, Meg and Luke and secondly, how much both Cammy and everyone else in my family (especially my Aunty Anthea who too sent a similar request) want to help us and see us rise. And, when they personally don't have the resources to help, they will do what it takes to make this journey so much easier.

The Lady of the Hour...Sam's Aunty Cammy


Two things in closing :

1. Please don't forget about the plight of the Harcombe family 

2. I discovered a new "worst place to v-word" nominee...so the Mugg&Bean, Ackermans and the car all move over to make way for....into a basket full of newly washed laundry! 

Wednesday, November 23, 2011

"Special" Connections

Earlier on this week a friend and ex-colleague and I connected up on Facebook. I glanced briefly at our "mutual friends" expecting to see only people we had both worked with several years ago. Surprise is not an adequate-enough word to explain my reaction at seeing a completely unexpected friend, Lloyd Tooke, daddy to Sam's RTS brother Matt Tooke . Those of you familiar with our RTS community will know there are not many people around who can say they know an RTS family, let alone one single person being able to boast at knowing not just one, but two RTS families...purely out of randomness, without having met the one through the other. Awesome! After a super brief catch-up we discovered yet another "special" connection, Alan and his wife, Carien, have a very special angel of their own...Catherine Jamie Harcombe. Jamie, as she is known, has Down's Syndrome and at the tender young age of just four months has already endured a major heart operation as well as another surgery just days later to remedy the build-up of fluid surrounding the heart, which surgeries has left her mom and dad with an almost impossibly outrageous medical bill, for which they are receiving no assistance from their medical insurers. Please go have a look at Jamie's webpage to read more about the Harcombe's plight...and go ahead, make a donation....I dare ya!

Life here in Smurfville continues much as it has over the past few weeks...we are in the middle of Meghan's final exams for which the studying, I had thought, was going to go pretty amicably. But alas, even though she was super-enthusiastic about studying for all the revision tests for which she got mostly fullmarks or just one or two incorrect answers, the studying for the actual exams is proving (for some odd reason) to be so much more troublesome for Meg. As I sit typing this, it is pouring with rain outside as Spring battles to uphold a permanent presence here in Cape Town although I am pretty certain that in just a month or two's time I will be complaining about the Summer heat.

As for our Sam, he is still protesting solidly against his physio sessions and, quite often now, his occupational therapy sessions as well. Speech therapy is going remarkably well, mostly due to Tanya's quick-as-a-flash movements when she "sneaks" a subtle speech prompt in while Sam plays. I haven't quite got the hang of it yet and first try and maneauver Sam into an easily-receptive position, then have to co-ordinate my fingers into the required position and then slowly "go in" for the actual contact on Sam's face...by which time Sam has seen me coming from a mile. Luckily though Sam's defensiveness is much less-guarded with me so even though I sometimes have to repeat the prompt once or twice before I get it right, he's actually quite tolerant. Sam's eating habits stay pretty much unchanged, we're still predominantly on Stage 2 baby food. Sam has seemed to warm up to his slightly-distorted notion that whatever is on our plate is guaranteed to be tastier than what is in his bowl. The amusing part is that often we are eating the same thing! His sleeping is still as disruptive as always and Chris is almost convinced by now that Sam has restless leg syndrome as he tosses, turns and thrashes around literally the whole night. I am not convinced that it is not some kind of spin-off of something that is happening with that right testicle. Either way, I can count on one hand the number of nights over the past few months that Sam has slept through without me having to get up sometimes as regularly as every 20 minutes to re-settle him...but I've blogged about this before, so let's just leave it at that ;)

Chris and I are battling to decide on a Christmas pressie for Sam, who is unable to provide us with a detailed, in-order-of-wanted value list, approximately four month's in advance...as Meghan has done. We've considered buying him a walker, but he frightens even when walking with one of us holding his torso, which is a great deal more secure than a walker - so the walker is out. He already has several educational, noise-making toys of which most can hold his attention for a maximum of about two minutes. Ride-on's are definitely out as the one we bought him for his birthday is only good for being pushed by a crawling Sam, he refuses to actually sit on it let alone ride on it. The chances are by the time he's conquered his sensory issues enough to actually enjoy such a toy, his little legs will be too long for it anyway. We'll have to put a great deal more thought into this one, without forgetting that Christmas presents this year are largely going to depend on our ever-so-giving South African Revenue Services who recently advised us that we have to pay in an amount of R15,000.00 for incorrectly claiming medical costs for a child with disabilities.

But there is awesome news, folks! According to SARS and contrary to the belief and advices of many specialists and doctors who have obviously wasted their hard-earned degress (nevermind the living proof of actual RTS patients)  - Rubinstein-Taybi Syndrome is NOT permanent. Yes, you read correct...in approximately five years Samuel is going to be cured and will be a "normal" boy because, according to SARS, RTS is not a permanent disability. How amazing is that? In five years time Sam is going to walk and talk and be potty trained and eat normal food and have magically-straightened thumbs and feet, no red mark on his forehead....none of that at all (mmm...wonder if those tiny little indentations/holes behind the back of his ears will also disappear). Well, with news like this, who needs Christmas presents, right! Let's hear a Whoop! Whoop! for SARS.

On that slightly-disturbing note.....a random pic of a smurf wearing a smurf!

Thursday, November 17, 2011

A surgery-free Xmas!

The big news for now is that Sam's surgery, tentatively scheduled for the 14th December, has been postponed until early-January. I say "big" news as opposed to "good" news because I am not entirely sure how I feel about the change of plan...it's really kind of bitter-sweet. I have to be honest and say that I've had an incredibly uneasy feeling about the upcoming surgery. Possibly because, as mentioned previously, it was scheduled to take place the day before year-end shutdown, not made any easier by the struggle to secure an anaesthetist we are 100% comfortable with but certainly also effected by the unexpectedly traumatic experience Sam's little RTS brother, Jesus, recently endured which had our RTS family all round the world glued to FB for a number of days, eagerly awaiting updates which would report that this little angel boy was finally out-of-the-woods and recovering.

That said, we were all looking forward to finally putting the whole testicle-in-limbo saga behind us. It does sound sort of amusing when I put it like that, but it has been somewhat of a challenging and trying episode. On the other hand, we cannot deny the relief of actually being able to make some sort of plans for Christmas this year as opposed to last year when Sam's TSC surgery took place on the 20th December. But on the other hand.........Yip, I'm still pretty unsure about how I feel about the change of plan...maybe if I blog a little longer, it'll become a little clearer.

And a catch-up via pics of what we've been up to over the past week......


We've put together a little "feely" bag for Sam seeing as he seemed to be showing a little less defensiveness in his hands. It has been invaluable having Meg participate in this because watching her have fun with things which Sam would normally shrink away from having contact with, has made it a little easier....


...although having these little balloons (normally an aboluste no-no for Sam) statically fixed to your hair is not really quite the same as having to touch them with your hands....


...but it still made for some fun play.


Meg had the genius idea of putting some of Sam's plastic numbers into the bean container and Sam was quite comfortable fishing them out.


Attentively listening to his big sister's instructions :)


The hand splint which Sam is supposed to wear every night has definitely not been shown any less defensiveness. In fact, it seems to have gotten worse. I though the most annoying problem was that he somehow managed to wangle his little hand out of the three velcro straps. Now when you put the splint on him, he has taken to banging his hand into the side of the cot until you remove the splint. So I decided to show him, with the help of his little stuffed friend, that it's really quite okay for a little smurf to have to wear the nighttime splint!


But this is basically the closest we got to a smurf-tolerated splinting!
One thing's for sure...this little blue guy ain't gonna have any trouble with camptodactyly any time soon.


Samuel is obsessed with his sister...the second she is within reaching distance of Sam he makes a beeline for her. On the upside, he has absolutely mastered his pulling himself up skills and can go from a kneeling position into a standing position in a flash. On the oops-side, Sam's version of "play" at this point consists purely of hair-pulling, pinching and grinding his forehead into hers. Meghan is, for the most part, super-tolerant as she knows that if he knew of another way to play and interact with her, he would. Sam's OT, Pippa, has suggested an afternoon therapy session in the near future with both Meg and Sam so that she can show Meg how to react when Sam approaches, as well as to suggest some sensory-fulfilling "games" for them to share.


Mischievous little grin :)


Sam loves watching himself in the mirror.


A super-sleepy bathtime...which ironically always seems to give him a second wind...


...and just a random pic!

Wednesday, November 9, 2011

Poltergeist-style TV trouble

We've been experiencing two separate kinds of problems with our tv recently, one technical and the other smurfical. The on/off button on our remote control for the tv has been giving some trouble. The button sort of sticks for a second or two after you've pressed it to switch the tv off, so if you're not careful a couple of seconds later the tv just goes on again on its own. Now we make a point of hanging around for a minute after putting the tv off in the evenings to make sure it's stayed off, because every now and again we would wake up to find the tv had been on right through the night. As Chris goes to bed much later than I do, I have often moaned at him on these mornings for not having noticed that the tv was still on (presuming of course that it was coming back on seconds after I've left the room) but each time he swears it was definitely off. A little freaky.

The smurfical issue is that a certain little boy has an obsession with pressing buttons. Sometimes it's almost as if his fingers have a mind of their own - he'll be kneeling in front of the tv watching something and that little pointer finger is just triggering away non-stop and then he occasionally gets frustrated because the channel changes in one of his favourite parts, but he's the one doing the changing! Apart from flicking through the AV buttons and constantly changing the volume, he's also changed the picture from colour to black and white and has even occasionally set the timer on the tv so that it goes off suddenly. Last night I made a point of hanging around for a good few minutes before going off to bed to make sure the tv was good and solid off but low and behold when I got up this morning it was on again. Of course I moaned at Chris and of course he insisted the tv was off when he went to bed. And then the light bulb, like the tv, went on and Chris said that it had to be Sam setting the on-timer for the tv, because if he can set it to go off he can most certainly set it to go on. A little later this morning Sam was doing his usual trigger-finger-exercises and as soon as I saw him hit the Menu button I, as I normally do, quickly grabbed the remote control to try and exit out of the menu before he could go any further and there it was : ON TIMER 00:06! (Obviously the longer I take to catch him, the later the tv goes on).

So apart from keeping us on our toes with mysterious appliance-behaviour, Sam is pretty much in the same place he was a week ago. The whole sensory vs pain/discomfort thing is still a bit baffling to me and, quite honestly, worrying. We've determined (as best we can) that there is no obvious reason for his, now, simply refusing to sit whether it be at home or more aggressively at PT. The thing that confuses me the most is that there does seem to be at least a slight improvement with the other vestibular sensory issues, like lying him back in the bath to wash his hair and even with Heidi being able to lie him down herself on the mat to do his stretches on Monday (last session I had to first lie him down for her and then she took over). So why would sitting then still be such an issue? I am still checking his urine often to make sure there's no bladder infection and really just don't know what other issues there could be that would only really become painful/uncomfortable when in a sitting position, other than the obvious misplaced testicle. I've even wondered if there isn't something going on in the area where his spinal cord was released, which of course has me imagining that I have seen a change in his bladder function again. But that was almost a whole year ago so surely it wouldn't take so long for any complications to surface? Well, I guess we'll know for certain within the next five weeks whether it could be because of the testicle and then we have an annual follow-up with APF in January/February to make sure everything else is still okay neurologically. Just have to sit it out I guess :)

Because Sam has been relatively healthy over the past few weeks (with the exception of the fluid in his left ear) we've managed to stick to our therapy schedule. Thankfully he has not yet developed any major aversion to speech therapy which I think is purely because his ST is really letting Sam set the pace and in doing so has him trusting her enough that she has even managed to attempt one or two light speech prompts on him in our last two sessions. So now when him and I are at home I try and squeeze one or two in myself when we are sitting quietly so that he becomes more used to the idea of having his face touched and when we sing songs like Incy Wincy Spider the "spider" first climbs up his cheeks before reaching the spout. Sam's definitely more comfortable with the whole exercise than what he was in the beginning. As mentioned some time ago, I've decided to give the signing another go and Sam is doing great with signing "more" now. So, the speech progress is relatively slow but it is progress nonetheless and at this point, although the need for being realistic is flashing constantly in my mind, I am borderline D.E.S.P.E.R.A.T.E. for some form of expressive communication from Sam.

The nighttime splinting of Sam's left hand to try and remedy the camptodactyly is just not going well. First Sam, albeit with much protesting, tolerated the splint. Then he figured out how to take the splint off (Do not ask me how - it has THREE straps), which meant I had to secure it a little tighter. Now he just bangs his hand violently against the side of the cot until you take it off. So we're not expecting a whole lot of improvement for those little fingers.

Meg's allergies/flu/reaction-to-paint-fumes or whatever it is that was actually ailing her seemed to improve towards the end of last week but not only does it seem to be worsening again, I too now seem to be coming down with something and Sam has also been coughing a little - not the greatest timing. As the weeks spiral towards the normal year-end rituals we have final exams for Meg starting next week, a visit from Sam's granny, a ballet presentation and another Christmas concert to look forward to before school closes and we find ourselves in the middle of yet another December surgery! I am hoping and praying (so please feel free to join in) that with this being a far less complicated surgery, that Sam's recovery from both the op and the anaesthetic will be so much less traumatic than it was in August. With it being so close to the time (basically the day before) when everyone packs up and heads-off on leave for the next few weeks, I do not want any unexpected issues and am waiting anxiously to find out whether the anaesthetist who did Sam's thumbs and tethered spinal cord will be able to juggle his already hectic schedule to help us out again (Yet again, prayers in this department would be so appreciated).

Tuesday, November 1, 2011

In the past fourteen days......

...we've had two speech therapies; one occupation therapy; one very tearful and tantrum-filled physiotherapy; Meghan's school Christmas concert (which had been performed for us as at home several times by then); attended an awesome Saturday morning breakfast at our church blessed with an equally awesome message about clay pots; attended a surprisingly undisturbed sermon the following morning with the help of some chocolate (Yes, at 9:30am); had two ENT consultations - one for myself and one for Sam where it was found that Sam once again has fluid in his ears; spent several days (yet again) filled with frustration as to why grommets/tubes were not inserted into Sam's ear when he happened to be in a hospital; in a theatre, under anaesthetic, accompanied by a letter from another specialist explaining the extensive problems Sam had had with his ears over the previous four months, surrounded by both the necessary equipment as well as the necessary specialist having another ENT procedure; had an appointment with Sam's urologist; tentatively scheduled the removal of the right testicle for the week of 12 - 15 December; realised that if Sam's ears don't clear up by then and grommets need to be inserted shortly, he will be having two anaesthetics barely a month apart; spent another couple of days moping about why it seems to be impossible to simply choose just ONE hospital and take it for granted that EACH AND EVERY specialist there will attend to your child with an equal balance of professionalism, expertise and (last but certainly not least) a comforting degree of compassion and consideration; then spent several hours appreciating how blessed we are that, despite not being able to co-ordinate all Sam's surgeries or even follow-up appointments, we have managed to find some of the most professional, expert, compassionate and considerate specialists available here; attempted to update this blog a minimum of five times; deleted a minimum of five draft posts due to the content thereof becoming irrelevant in the time it took to actually publish; spent several hours hunting down the latest craze in Meghan's clique being "teachers pets" (awesome littly fuzzy creatures with teeny weeny little booklets inside on all sorts of things like learning how to draw, magic tricks, jokes, etc); bought yet another new pram for Sam in the hope that this one will indeed meet Sam's sensory defensive requirements; had a GP visit for Meg who is fighting a particularly troublesome URTI; discovered the Talking Tom iPad app; spent several hours watching Sam grow addicted to the Talking Tom iPad app and all this without taking into account the time it took to give Sam 70 odd bottles, change close to 100 nappies, spend a minimum of fourteen hours putting Sam to sleep, 21 hours feeding him his porridge/food and all the other trivial tasks like stimulating play, sensory brushing, bottle-washing, formula making, supper making, etc.

Phew....now I don't feel so bad about not having updated his blog in fourteen days :-D