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)

Monday, December 19, 2011

Elvis has entered the building....and the family!

Nah! Just kidding!

So Pasty Smurf seems to be, albeit slowly, on the mend. He is still coughing and late this afternoon his cough was sounding very croup-like again. But thank goodness we have had no v-wording for two solid days now (and, No, I am not sending that out into the Universe as an invitation). I am so disappointed that, with all the chaos at last week's paed appointment when Dr B weighed Sam, I didn't even ask what his weight is now. I do remember that his height is now 84cm which is not too shabby at all because that's like a 3cm growth in about four/five months. Also, after showing Dr B how severely Sam's sensory defensiveness is at the moment,  Dr B did a delicate examination of where he thinks Sam's right teste is sitting and, although not 100% sure but pretty darn close, he thought he located it sitting much further out of Sam's groin area than we anticipated - almost kind of under Sam's hip bone. Anyway, Dr B is quite convinced that that little teste could definitely be causing Sam some discomfort, at best, if not pain with certain movements and positions. So, boy are we counting down anxiously until the 20th January to, hopefully, see the removal of the teste having a profound effect on Sam's SID.

On Sunday afternoon Sam seemed to be feeling a little better so we ventured out into the big, wide world...or more specifically down to Aunty Cammy's to meet the new addition to hers and Uncle D's family. So folks, meet Elvis....

...who loved playing with Sam's stacking rings almost as much as Sam does,


and had Sam beside himself with excitement.

Between Sam and Elvis, they kept Uncle D busy fishing the stacking rings out from under the couch.

Random pic of Sam and Dad


And please do note Dad's snazzy new haircut...cut and styled by moi! I'm thinking of opening my own little hair salon, Salon de Smurf...just as long as all the customers are only wanting military-style do's. Although I'm quite sure I could manage quite well with an emo-style cut (not even sure if there's even any cutting involved there) and have extensive experience with the haircutting of squirmey-wormey-type little people. I've asked Meg several times if I can't experiment a little on her hair too, but would you believe she's just simply refusing. Tsk Tsk.

Saturday, December 17, 2011

Pasty Smurf

We are on Day 4 of Sam’s virus-croup-combo, but it feels more like Day 40. Sam is kind of on a vomit/fever/coughing roller coaster. He goes through stages when it appears as though he might be on the mend, but then next minute he’s losing his breath, hitting the 38 temps and vomiting again. It’s just a LITTLE frustrating!  The roller coaster did kind of end on a “high” tonight with Sam going down with much less drama than the past few evenings so let’s hope it’s a good sign. I have heard that there is quite a potent virus doing the rounds in Cape Town which has so badly affected children as old as fourteen, that they’ve had to be hospitalized. Doesn’t really set the tone for a great festive season having your child in hospital, so here’s hoping the virus makes itself scarce!

At Sam’s doc appointment on 1 December he worked himself up into such a state when the doc examined him that he landed up vomiting all over both him and I (Sam, that is, not the doc – although he too was starting to look a little green towards the end of the consult). So I decided to go prepared at Wednesday’s appointment with Sam’s paed, even though “going complete” meant having to lug along two separate bags : both Sam’s normal “baby” bag (which is already jam-packed) and then a “pull-in-case-of-emergency” bag consisting of a great big towel (which has proven excellent at vomit catching) and a complete change of clothes. And thank goodness I did. The actual examination was remarkably uneventful, with Sam almost falling asleep at one point. At the end of the consult, I had just finished telling Dr B about how badly Sam has regressed with regards to his sensory issues, when he decided to weigh Sam (completely unawares, of course, of how bad it really is at the moment)…which involved Sam sitting on the baby scale…which (with sitting anywhere being a serious No-No at the moment) then involved Sam freaking out and vomiting everywhere!

Dr B opted to send us home anyway, with strict instructions to get Sam keeping some fluids in by the end of the day or, failing which, a hospital stay and IV were inevitable. I pointed out that Sam’s original surgery date had been Dec 14th and that he was probably determined to stick to the original plan of being in hospital then (he doesn’t take well to change, our Sam) so Dr B suggested I make a detour through the paediatric ward on the way out just to satisfy Sam’s need to be in hospital! I was like, “Errr….let me think about that one….of course not!!”

A rather pasty, bleak little smurf :(

Well, we are eight sleeps away from Christmas Day and we have still not done a scrap of Christmas shopping…although having a vomiting smurf accompany us could prove invaluable in lengthy queues! If he doesn’t improve quite drastically over the next couple of days though, I’m afraid all of our pressies are going to be in the form of a stack of I.O.U.’s….imagine?

Wednesday, December 14, 2011

Adrian

Yesterday morning, we took a little drive, to go wish a friend (well actually Sam's friend, Adrian) Merry Christmas.

This is Adrian :



Adrian sells newspapers at an extremely busy intersection en route home from dropping Meghan at school and every schoolday morning, without fail, the second our car stops Adrian rushes up to the window and spends the next two to three light changes entertaining Sam by dancing, signing, clapping hands...you name it, he does it...as long as it gets a smile and some handclapping out of Sam. I can count on my one hand the number of days Adrian has not been at work, he's there whether its blazing hot or pouring with rain...and it's about the only part of our car journey during which Samuel does not moan and cry. Over the weekend we received a truly precious gift from a certain Knight and his Princess with an ever more precious message. Seeing as we seem to have been the object of many generous gestures lately, we wished to share our blessings with someone who is always smiling and friendly and keen to make others happy, so we went to share our gift with Adrian and thank him for the cherished contribution he makes to Sam's life. We'd be quite devastated if we had to face that intersection without Adrian as I am sure several other motorists would feel as Adrian's antics usually draw smiles from others as well (although there are the occasional frowns and disapproving looks).

Friday, December 2, 2011

No more faking, Sam!

We are still kind of swept up in the excitement and thankfulness of the blessings Sam received earlier this week. I say "blessingS" because not only did we receive the super generous sponsorship from Lancewood but a little later on Tuesday received yet another, equally generous, donation from an amazing family in their personal capacity, if not more appreciated because of that. Stan & Jodi - your compassion and delight in wanting to help Sam be the best Sam he can be, is awesome and truly inspiring. Our true thankfulness goes far beyond what any words can express. xxx

Our little conqueror smurf is completely oblivious to what amazing events have being taking place all around him this week, except maybe as to why Mom was bawling all the way to OT after receiving a certain phone call. But who can blame him as, after a particularly fussy night on Tuesday ("fussy" meaning that instead of thrashing and rolling around every 20-30 minutes, he was thrashing and rolling around every 2-3 minutes) and a sudden refusal to drink or eat on Wednesday afternoon, our GP confirmed yesterday morning that Sam yet again has a red, bulging ear drum. (I am NOT even going to go there!) So, he's on a five day course of Orelox, which of course tastes simply smashing, until his ENT appointment on Tuesday, which ENT appoinment will undoubtedly lead to grommets...soon! My initial "plan" was to try and stretch the grommets procedure until the 14th December, for which his surgery to take care of that little right testicle was originally scheduled, in order to avoid two anaesthetics so close together. But there goes that plan out the window with the testicle surgery now been moved to Jan. Now we're still facing two anaesthetics so close to each other. *sigh*

Perhaps Sam HAS picked up on all the good things happening around him, as he has certainly become more verbal lately...as if to say "See, I'm doing my part too!". At last week's speech session, Sam thoroughly enjoyed some mirror-time, so I found a loose mirror we had lying around (Uhhmmm...if swiping it out of Meghan's room could be considered loose) and have placed it in Sam's little play area and he spends ages on his knees in front of it doing all sorts of things like different assortments of hand-clapping, some drumsticking on it (there just had to be tapping/knocking somewhere) and even some self-awareness exploration like touching his own face, then his head, then his knees...he even pulled his own hair yesterday! (Told you those little fingers have a mind of their own). It's probably been one of the most worthwhile additions to his toy collection - who woulda figured?

We've yet to receive any news from SARS as to whether they do indeed agree that RTS is an actual disability, making me wonder if perhaps they've decided otherwise. In light of this I wondered to myself if perhaps we are not the ignorant party, so sat Sam down last night and decided it was time to get down to the crux of the matter. I said, "Sam, apparently SARS is under the impression that you are faking a disability. So, scadaddle your little rear-end off this bed, march down the passage to go ask your dad to make you a sarmie while I quickly get rid of all the accessories, meds, books and other tools we've accumulated in lieu of your supposed special needs."

Anyway, I've gotta run...we're off to SARS quickly! I'm going to ask them to take a quick look in Sam's ears for me...what with them being such profound medical experts I am sure they can tell me whether there's any improvement!

In closing, some pics!

Sam refining his DJ skills...for whatever reason, he loves spinning the discs around in their covers!
(No, we don't expect these cd's to be readable for much longer!)

 
Having a chat to Dad!

 
Sam bringing new meaning to the term "parallel play" 

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

Tuesday, October 18, 2011

The Overflow of the Heart.....

"For out of the overflow of the heart the mouth speaks."  (Matt 12:34)

So, if our heart is troubled then so are our words. This is why I often choose not to blog during particularly trying times but to rather be still for a while until, almost always, someone (usually uknowingly) puts everything into perspective again. Oh for sure when the problems are as annoying, but still relatively superficial, as self-righteous remarks made in a doctor's room or a derogatory comment made by a small boy lacking guidance and a good set of values, I cannot wait to pounce on the keyboard and vent my anger. But when, instead of anger, you are dealing with fear and downheartedness - emotions which are far more difficult to overcome - sometimes it takes a little longer to work through. Just as importantly, I don't want Sam's blog to become one neverending mash of melancholy filled with doom and gloom posts about how awful it can be to have a child with special needs.

If I had given daily reports about Sam's wellbeing over the past week, it would have been nothing as spectacular as near-death experiences or fatal diagnosis' or anything nearly as soap-opera-like as that. It would have been seemingly insignificant issues like the fact that when fetching Meghan from school one day, as one of her friends walked up to greet Sam with a lovely smile, she received a blow to the face in return. Or that one afternoon, while trying to collect Sam's medication from the chemist, he threw such violent, screaming tantrums that, with trying to co-ordinate holding on to my wallet, holding the meds and signing the cash slip, he almost threw himself completely out of my arms and onto the floor, amidst a good few "shames" from other customers and one smug dad who looked at me and then pointedly looked at his daughter of roughly the same age, who was sitting angel-like in the trolley, and gave her a kiss on the forehead as if to say "See, this is how it should be...". There would be mention of a generally aggressive, exceptionally frustrated and obviously unhappy little boy who has smiled seldom over the last few days while now making a habit of rocking on all fours while hitting his forehead into the head of his cot, the cupboard doors or even the safety gate.

Now I am so not the kind of person that likes surprises or guessing games and my close family will readily vouch for that after the number of times I ask them to tell me the endings of movies or the perhaps unanticipated reaction Chris gets when he tells me to just get in the car and when I ask where we're going, he says "You'll see..." or something to that effect. I don't do surprises...more importantly, I don't do the unknown. Not because I am that boring - although I do so *LOVE* boring and predictable...but because I want to always be absolutely 100% prepared. I want to be prepared for a bad/sad ending in a movie - I will still watch it, I just want to prepare myself. I want to be prepared for a "surprise" journey, so that I know what to take with, what to wear, the length of the journey, etc. And, perhaps the most important and most delicate matter in our lives at the moment, I want to be completely, utterly and unquestionably prepared for Sam...and I am not. Because I don't know how to ease his discomfort or pain, I don't know how to remedy his frustration at not being able to communicate and I don't know how to take away his sensory issues.

I am quite sure that one, or all, of these three things are responsible for where Sam is at the moment. I say that he has pain/discomfort because when I lie next to him at night while he tosses and literally thrashes himself around in the bed NON-STOP, he often takes my hand and presses it to his groin in the area where his two large cuts are from the last operation. I test his urine regularly, so I know for sure its not a bladder infection. I say frustration at not being able to communicate because when before he would make gentle gestures with his hand about something he wanted or somewhere he wanted to go, he now thrashes his little arm out angrily and grunts and moans or, if you are standing up or your back is to him, he will crawl up behind you and hit you...powerfully and aggressively. And I say sensory issues because of the constantly banging his head up against things and the fact that (with the exception of some progress in his hand defensiveness) there has been absolutely no improvement with regards to being able to sit him down on the floor without him getting scared, moving him around in the car, lying him back in the bath to wash his hair, etc.

Nothing has changed, while I sit and type this post, except the fact that I read two separate updates yesterday from other RTS moms about about how good life is for them right now (can't even remember if it was on FB or their actual blogs - have to resort to skimming for now)...the word "perfect" might even have been used. Both of these moms have four-year old little boys with RTS and while it was by no means a mind-blowing jolt into the reassuring realm of perspective, it did put my mind a little at ease that there will come a time, the Lord willing, when I can also make a similar statement.

For now, we keep going because we have to...although fantasising about a little village/town where EVERYONE living there either has their own special needs angel or is close family to or valuable source of support to a family with a special needs child, sure helps sometimes...a village where unacceptance, scorn, misconceptions, judgement and self-righteous are a forbidden law. A little village complete with a hospital and intervention centre filled to the brim with caring, compassionate and inspirations specialists, school and daycare centre, shopping centre, theme park, recreation centre complete with an undercover, sensory-pleasing swimming pool, SN-friendly churches and restaurants...I could go on and on... "Oh Happy Days...Oh Happy Days"

Random pics :

Meg had her athletics day on Friday. I had originally planned on taking Sam with me, but due to his rather unsocial behaviour lately decided not to - thank goodness! The activities were eventually rained out due to rather miserable weather. Sam would have loved seeing the 'Linka Smurfs though. Luckily over the past couple of weeks Meghan has done several (a day) renditions of each and every cheerleading song they were going to be signing so we, Sam included, possibly know the actions better than what the smurfs did.


Meg, Kaylee and Jenna moments before they sprung away with their high jump (pardon the pun).


A pic I posted on FB on Sunday of Sam reading to his teddies!


Sam trying to show of his iPadding abilities...I left him (albeit surrounded with cushions and plonkey's as one would a 5 month old baby) with Old Macdonal E-I-E-I-Oing on his iPad and next thing he'd found his way to the photo's I'd used for the iComm app...

 
Something really positive that happened this morning. While feeding Sam, who was holding his favourite number 5, he slowly and deliberately placed 5 into his bowl of Kreemy Meal. Ordinarily this would not be reason for excitement, unless you are dealing with a little boy who is extremely sensory defensive in his hands. He then took 5 back out again, messed with his other hand in the little bit of porridge that had landed on his tray and continued to hold 5, although rather gingerly between two fingers, while he carried on playing!


Definite progress!


 

Monday, October 10, 2011

Bye Bye Charity Bond...Bye Bye Now

Okay, so let's start off with the bad news (not that there's any particularly good news to compensate, but maybe I'll think of something before the end of the post) - we have had to give up our hope of organising a charity bond for RTS to ride in the March 2012 Cape Argus Cycle Tour as we needed a minimum of ten riders to participate. Apart from our original aim, which was to raise awareness of RTS, I was hoping to use any monies which may have been  donated to put towards trying to organise our own little RTS South Africa conference some time next year. So, I am a little disappointed but also conscious of the fact that perhaps I should have tried to get the group together a little sooner. Chris and I will still ride, in whatever get-up we agree on by then (we are both leaning towards a Smurf theme) and will then look to perhaps a more successful attempt for the 2013 Argus...now if that isn't enough notice, then I just don't know :)

On Saturday we got to share in the birthday celebrations for both Sam's RTS brother Matt's birthday and Matt's equally adorable baby brother, Nic. It was great catching up with our little RTS family and seeing in person how much all the little kiddies have grown and progressed. I hope we get to do it again soon. Here are a few pics from the party, but there's a couple more on my FB page :

 
Sam and his RTS sister, Peyton, with their beautiful big sisters


Loved this one of the three RTS sweeties...Sam looking at Matt look at Peyton


Peyton with her Dad


and Sam with his Dad


The two girls, Tayla and Meg, just chilling. These two have become such good friends in such a short period of time which I think is a real blessing waiting to happen for a time when either or both of them might need someone (other than a parent) to talk to, who can truly relate to their circumstances.
(and please do note those gorgeously huge and lovely strawberries which were offered in super generous portions at the party...I can still taste them now...Delish!)

Yesterday was a bit of a frustrating day...firstly went off to church with Sam, who was particularly fussy and disruptive, so I had to leave the main church even before the worshipping was finished. Off to the baby room which has now been equiped with a tv, so not a bad alternative except that both the little boy and other mom already there were both coughing and sniffing something silly...so tried to hang around outside with the sunday school kids who were painting various items to place in the church garden, like rocks and little boards (BTW awesome idea, whoever's it was) but Sam threw a tantrum when I wouldn't let him open and close the entrance door. So back inside to the foyer of the church and kitchen area which, of course, has loads more doors worthy of tantrum-throwing requests. Then, to top it off, Sam decided to make a poo which is always such an awesome experience because, due to his aggressive sensory defensiveness at the moment, I cannot get him into the "lying down" position without him squealing hysrerically. So, Plan B? Have you ever tried to change the dirty nappy of a not-yet-walking two year old, with them in a standing position? No? You gotta try it...it's very entertaining.

Later yesterday afternoon went off to my cellphone service provider to renew my two-year contract, just like I did two years before now. But they would not allow me to renew because I cannot provide them with employment details!! Mmmmm....now why would I not be able to provide them with employment details...let me think....Oh Yes, it's because I am unempoyed...just like I have been for the last three years...which means, and I'll go slowly here for you, unnamed service provider (but whose name starts with a "c" and ends in a "c")so that you don't get lost...that I was unemployed the last time I renewed my contract as well. Which contract, I have to point out, has not once over the last eight or ten years ever been paid a single day late! Just had to get that out there.....Uuurrrggghhhh!

In closing, a short video of what a little smurf has to do when he has outgrown the weight limit on his mechanical swing...why, he swings himself of course :)

Oh, P.S., thought of some good news...this morning I washed my face with TRESemme Shampoo with a lower sulfate cleansing alternative and with added Aloe Vera and Avocado...which means my face will be protected against damage and breakage the whole day! How awesome is that?

*Oh Happy Days.....*


video

Friday, October 7, 2011

Torture...pure T.O.R.T.U.R.E.

These are the words that have, very melodramatically, been delivered to me several times over the past few days by my Glee-loving, feigning dizziness, ever-putting-on-a-show daughter. On Wednesday, when we saw the hand OT at Vincent Pallotti, we could not find parking close to the hand clinic so had to park in the hospital's general parking area about 300 metres away from the entrance. I know what you're thinking...she's young, energetic and fit...or so you'd think, AND didn't have a squirmey-wormey smurf on the arm. But alas, when we left the clinic just before noon, it was quite a show she put on complete with moments of nearly collapsing to the ground with the "torture...pure torture" of having to walk so far to the car!

Yesterday was even more of a Meg-atastrophe...not only could we not find parking in the general parking area, we had to park on an upper level parking area, which meant stairs. THE HORROR!!! So again, when we left, it was amidst regular outbursts of "torture...pure torture". She really is such a funny kid. Chris desperately wanted me to take a video of her "watching" Glee the other evening (she watches each episode an absolute minimum of at least four/five times...every....single...day!). Who woulda thought Glee was an interactive programme and required the watcher thereof to mimic every move made throughout the show. You would have thought she'd be able manage the occasional transition between hospital and car then, right? Anyway, Meg has been an invaluable help to me over the past week - it's thanks to her that Kim managed to refit Sam's splint on Wednesday, this time without hysterical screaming which meant a much more effective fit. And yesterday kept Sam occupied through pretty much our entire appointment with Dr dT, so that I could concentrate on what was being said. So I have just reserved tickets for her and and I to go watch the new Smurf 3-D movie this evening...it's a surprise, haven't told her yet.

Oh yes...our mysterious "orthopaed" appointment yesterday afternoon. I was watching an old Hillsong episode while doing my own "torture...pure torture" on the spinning bike last night. It was about negativity and how even a remotely negative outlook effects everything...our thoughts, our actions...our perceptions! Yesterday was a prime example. Here's what I was thinking : last week, when we saw Sam's hand surgeon, I had asked him about the lack of fluidity in Sam's hand movements (eg. when he waves, it is done in a series of jerks as opposed to a flowing movement) and he'd said that he thought it to be a neurological issue. I didn't prod any further because the whole appointment lasted about two hours and of course, by then, Sam was doing his own remarkably accurate impression of Grumpy Smurf. But by the time we arrived back at home the whole "neurological" thing had had plenty of time to mull around in my head and I regretted not asking for more information. Then on Friday morning, when Dr dT's assistant phoned and requested that I bring Sam in, my mind went wild and I figured that perhaps Dr C had also been giving more thought to the neurological thing and done some further investigating and come up with a gloomy diagnosis, but wanted Dr dT's opinion on it before one of them shared the bad news with me! Seriously, that is really what I was expecting. Boy, was I wrong!

The real motivation behind the request was that Dr dT had in fact been researching and considering and researching and considering...and wanted to explain to me, in person, with the aid of graphics and Sam's x-rays exactly what is going on in Sam's little left foot and what the plan is to rectify it (and, to top it off, there was no charge for the consultation). Slightly off the mark I was, I'd say. And, yes...here it comes...I am absolutely loving Sam's specialist's at the moment.

The only drawback (is there ever not one?) is that we might be doing the surgery on Sam's foot a little sooner than I originally anticipated, possibly by the age of 3/3½ which would mean May-December next year, but I was hoping to only do the removal of the right testicle around April (which would mean a eight month gap between this and the last op) but with Dr dT and Dr J (urologist) being at different hospitals we would not be able to couple the two surgeries together, so let's hope we are looking more around the 3½ yrs mark for the foot surgery. I am becoming increasinly anxious about the fact that that little right testicle is wafting around halfway to where it's supposed to be, mostly because of the reaction I get from others, mostly doctors actually, when I tell them. Perhaps we need to bump up that surgery to mid-March, depending on how much time I'll need to recover from the Argus. In fact, now that I think about it, with the Argus officially taking place on the 11th March, I might very well still be cycling it on the 15th (Yes, I do know you only have seven hours to finish)...mmmm, might need some further thought, the op that is....already have a headache just thinking about it all.

Our ST for this morning was cancelled due to an illness in ST's family, so we resume next Thursday. And of course we have little Matt & Nic's birthday parties tomorrow. Yay! for seeing our RTS family again. And, on Monday morning, it's back to PT...Yikes!

Remember this pic :
Sam in May 2010

And here's how much he's grown :

He can barely fit into the swing now and, seeing as he's become too heavy for it to mechanically swing him, he now swings himself. Did I mention that at our last paed appointment, Dr B pointed out that, taking Sam's corrected age into consideration, he is just just touching the very bottom line on a NORMAL...yes, I said it, NORMAL weight graph! 

Tuesday, October 4, 2011

Mom-losing-it...again.


I am feeling ever-so-slightly overwhelmed with all Sam's doctor and therapy appointments at the moment. Was sooooo looking forward to a "quiet" week what with the short school break but before we knew it, every day was filled with one or the other intervention by the end of last week already, with the exception of today when we got to enjoy a totally unmedically-related breakfast with Aunty M and the boys! (Dankie julle xxx). We did also manage to slip away to Stilbaai for the weekend to celebrate Ouma's birthday with her and, even though the trip started off a bit shakily when part of my tooth (for which I am currently undergoing root canal ) went M.I.A. after I bit into a cheese puff (yes...a cheese puff) only an hour into our journey. Still, the remainder of the weekend went well with Sam being not too whingey on the ride there and, other than one throw-up incident on Saturday night, us being able to enjoy some quality time with family.

Sam had his very first appointment and assessment with his new NDT speechie on Friday morning. We are going to be using the Prompt speech technique with Sam initially which, although it seems a little intrusive for Sam's liking at the moment, looks really promising. Sam's OT, Pippa, has offered to do a short 15min session with Sam before his speech appointments to help desensitise him, which I am going to mention to his ST on Friday. Yes, I've said it a million times...and, please Lord, let me say it a million more....having therapists/doctors who go over and beyond their professional requirements is key to both your SN child's and your own confidence and wellbeing. Pippa and I were discussing the need for Sam to return to PT as well (which I've neglected recently because I felt his sensory defensiveness and desperate need for communication are currently far more pressing) as muscle tone, imbalance, etc can also play a part in speech difficulties. It was just one of "those" moments when all of a sudden, in a split second, everything just seemed too much. In my mind I had just seemed to get on top of Sam's schedule and needs. To top it off, bouncing around in the back of my mind constantly is the fact that Sam's orthopaed's (the "other" orthopaed - legs, hips, feet, neck, etc) assistant phoned on Thursday morning and asked me to please bring Sam in this coming Thursday. Normally we only see him every six months, with July having been our most recent appointment, and neither he nor many of Sam's other doctors very regularly phone US to schedule appointments. So when Pippa mentioned the PT, for a moment I felt a little fragile and, if the truth be known, there might have been an ever so-slight lip quiver and stray tear forcing its way out (much to Meghan's absolute horror). Once my flash of weakness and uncertainty had disappeared, we discussed the possibility of scheduling a team meeting with all of Sam's therapists and specialists, in order to make sure no areas are being overlapped nor, more importantly, neglected. I am not sure about the practicality of such a meeting with everyone's hectic schedules, but certainly do see a need for such a meeting so will mention the possibility to the parties concerned and see what the reactions are.

Tomorrow we are off to the hand OT to have a look at Sam's splint. The nighttime wearing of the splint has not been going well, with the one night Sam seemed to be tolerating it relatively comfortably being the night that he threw up in Stilbaai...and all over the splint. I am a little concerned that it is not a perfect fit as the little finger, being the most bent at this point, seems to evade the strapping completely.

On Thursday we have the requested appointment with Dr dT and then on Friday we are off, iPad in hand, to ST.

Alas, there is a light at the end of the tunnel...we have been invited to share in the celebrating of Matt and Nic Tooke's birthdays, this coming Saturday! It will be WONDERFUL to get to visit with our RTS family and catch-up in "real life" on all the events of the last few months.

Wednesday, September 28, 2011

Camp-say-whosey-whatsit?

Yesterday morning we had our much anticipated follow-up appointment with Sam's hand surgeon to a) check that the bones in his thumbs are still growing straight after last year's procedure and b) to have a look at why those little smurfy fingers are growing in a bit of a funky curve. The entire appointment took two hours...which ordinarily would be a little frustrating but throw in a blessed outcome and it becomes less frustrating and so much more worth the trouble.

Firstly - Sam's thumbs, although not completely "normal", continue to grow in as straight a manner as possible, ie. no regression to growing skew again. We will still have to look at repeating the operation when Sam is five but should Sam seem to have a relative amount of functionality at that time, I am not too certain we would go ahead with the surgery.

Secondly, Sam has a condition called Camptodactyly in three of his fingers on the left hand and two fingers on the right hand. I was certain the remedy would involve a surgery in the near future, but amazinly Dr C feels nighttime splinting might be aggressive enough to correct the fingers. So, most of yesterday's two hours was first spent trying to get remotely accurate x-rays of the thumbs and then a good sitting at the occupational therapist to fashion a splint for Sam. The only problematic issue is that take one little smurf + some serious sensory issues = not great success with handling of hands/fingers....as the poor OT discovered yesterday while trying to mould the splint on a squirming, screaming Sam. I decided that I would wait for Sam to fall asleep last night before putting the splint on but eventually didn't go through with it because for the first time in a long time Sam fell asleep relatively easily and seemed quite peaceful. Taking into consideration the difficulty we've had over the past few weeks to first get Sam to sleep at night and then to keep him asleep, I decided not to rock the boat on the one night it was all going well. Tonight though, regardless of all of this, I am definitely going to put the splint on - "Oh Happy Days"

It looks like Spring has finally sprung here and Sam and I have celebrated with an occasional morning walk, although Sam looks more like he's going on safari in the North Pole (if there is such a thing) instead of a quick stroll around the block.



Spring or no Spring, the morning air is still quite nippy and we are (touch wood) off to Stilbaai for the weekend so can't have our little man getting ill now.

Sam seems to be getting back into the OT swing of things  (pardon the pun) and gave Pippa a much easier go of it on Monday morning, although I think it is much more Pippa's "special" way with Sam as opposed to Sam putting in a whole lot of effort. Tsk Tsk....if it was easy, it just wouldn't be Sam!

I have to rush off as my spirited little boy, amongst all his new-found abilities, has learned how to throw a "fake" tantrum by forcing out a really exaggerated type of cry/grunt/shriek...all because I refused to let him sit on my lap and press on the pc keyboard while I am trying to update his blog :)

Monday, September 26, 2011

You *have* to see it to believe it.....

For some time now, when Sam watches his Brainy Baby Numbers dvd, he will hold up which ever foam number they are speaking about at that moment. I have taken a video of this too, a while ago, but my near-hysterical exclamations of joy completely overpower the video so, in an attempt to preserve some element of self-respect, I decided not to post the video.

This afternoon while watching Sam carefully select his numbers I couldn't quite understand why, when he's done it correctly so many times before, he kept selecting the incorrect numbers. My first reaction was to try and correct him but it was only after the second "take" that I realised he was selecting his foam numbers, in the correct order of course, in advance before they actually appeared on the screen. My silence thereafter is a clear indication of how stunned I was.....it's a bit of a long video even though I did stop at number 5 (be sure to turn the volume up so you can hear which number is being counted on the dvd) :

video

To say that my little smurf blew me away today would be the understatement of the year...Brampies and I barely managed to control the tears when we began to fully comprehend the amazing blessing we'd experienced. How awesome is our God!!!!

Wednesday, September 21, 2011

A One-Smurf Band

I am becoming more and more concerned about our little man's absolute LOVE for tv, especially as he has taught himself how to turn the volume up using the buttons on the tv. Just this morning we had a war-of-the-fingers as I stood behind him with the remote and for every notch I turned the volume down, so he turned it up.The only, very slight, consolation is that he is only interested in watching singing/music or anything to do with numbers and counting. He has no interest in anything remotely cartooney anymore, not even Mickey Mouse Clubhouse which used to be his favourite.

One other not-too-bad aspect is that he has picked up a decent amount of knowledge from his music/number shows, coupled with our daily "lessons" on numbers, counting, colours, etc. (although he does seem to pay more attention to the tv lately and when I am sitting in front of him with whatever activity we are busy with at that moment, he will quite often look passed me and point to the tv - maybe I should make myself a cardboard frame to wear with some background music from a hidden iPod). Anyway, Sam quite often imitates what he sees on the tv especially on his Brainy Baby : Music dvd (as I've mentioned before, all the characters on the Brainy Baby dvd's are children which I think is actually what the attraction is for Sam). So, when the children are learning about musical instruments Sam is keen to participate....







Sam can find a rhythm in *anything* even something simple as running bathwater and, of course, anything remotely rhythmic calls for a serious amount of hand-flapping and head-shaking. He is awfully sweet, this little boy.

We finally got back into our OT routine yesterday and it felt good...well for me anyway. Whenever we are therapy-deprived I feel unsettled and anxious, like we are losing valuable time. I know, doesn't make sense, not even to me :) So it was great to see Nita and Pippa again yesterday, although with the latest surgery and sensory regression, even Pippa noted how defensive Sam is at the moment. It'll probably just take one or two more sessions before Sam's back to his old self again. Next week we've ST and a trip to the hand surgeon to add to our schedule as well and an utterly thrilling trip to the dentist for me, appointment no. 2 in yet another root canal process. I am keen to get Sam to a dentist soon too, although I don't see any obvious cavities or problems and he's quite okay with teeth brushing at the moment (surprisingly), has even taken to sticking his tongue out so I can brush that too. I guess with hair brushing, sensory brushing and teeth brushing he just figures ALL of him needs some type of brushing. I have noticed that his one little front tooth seems to be discolouring a little at the back so am thinking of having it checked out, but will wait until we've our orthopaedic appointment behind us before I subject Sam to any unnecessary trauma by adding another doc to our entourage.

We have had quite a long stretch as well since our last PT, but Sam and I still have our own PT session almost every day. He has gotten awfully cute with his PT exercises and when stretching his hams he does the leg exercises on his own and has even started lifting his own bum now...Heidi would *love* this, she tried at every session to get him to do this, but I am almost certain that if I had to try and coax him to do it during an actual PT session, Sam would just lie there like a ragdoll.

In the middle of typing this blog, I slipped out for my very first EVER Sam-less breakie with Aunty M, while Brampies stayed with Sam.....A-L-O-N-E! And, how do you know our Sam, he had to of course give Brampies a dirty nappy (Brampies' first EVER poo nappy...LOL). It was awesome to just sit back and indulge in some girly chatter while drinking a warm cappucino and munching on a muffin...thanks M xxx. And I got home to a perfectly calm little smurf and equally calm Brampies, with the only "oops" being that Sam has somehow managed to change our tv to black and white and I can't figure out how to fix it.

A short update on Sam's eating and sleeping (short because I am scared to jinx the good stuff) : Sam's appetite seems to have returned and/or his sudden aversion to pureed food has disappeared, whichever was the culprit. Sleeping is still a struggle with some really trying moments, like last night when it took two hours of trying to get him to sleep before eventually caving in and just going to lie with him in our bed. Oh, but at least he is eating again....thank the Lord!

Sunday, September 18, 2011

Luvin' Reflux

We possibly just attended our shortest church service *ever*! Why,you may ask...because our v-wording smurf, just as our minister's daughter began giving her first ever testimony, refluxed up not only the bottle he'd just been drinking, but both his porridge and morning bottle as well.

Luvin' reflux right now *sigh* (especially as this was the first time in almost 2 months that Sam seemed healthy enough to attend!)

Friday, September 16, 2011

Ride for Rubinstein-Taybi Syndrome

Well, it's confirmed...Chris and I have entered to ride in the Cape Argus Pick 'n Pay Cycle Tour being held on 11 March 2012. We would desperately love to be able to ride as a Charity Bond for RTS, which would mean we'd be featured on the official website and be able to purchase a stand at the Expo at a special rate, all in the hope of raising a greater awareness of Rubinstein-Taybi Syndrome in South Africa.

The only slight drawback is that to enter as part of a Charity Bond you pay a R500.00 registration fee, as opposed to the normal R300.00 but there are a number of advantages of riding in the Bond, well worth the extra R200.00 in my opinion, being :

  • A start time of no later than 08:45am (great news for "new riders" and especially for me as a first-time rider, as the latest starting time is 10:00am)
  • A "special" goody bag
  • A special area at registration for collection of race packs
  •  The opportunity to support a good cause
In order to be able to ride as a Bond, we need to have confirmed a minimum of ten riders by 30th September 2011 and (at R500.00 per rider) be able to pay the R5,000.00 by that time as well. Thereafter, we have until 15 January 2012 to add riders to our Bond.

Yes, the thought of cycling 110km's is pretty daunting for some (or just plain scary for me), but the modus operandi from my side is to simply have heaps of fun, to get caught up in the excitement and anticipation of "getting ready" before the time...enough to actually make the 110km's within the allocated time...and of course doing all this while knowing I am doing something for my precious little smurf. So you need not be a veteran or even half-serious cyclist to join us. And to give you an idea of how challenging this is going to be for me....it took me half an hour to cycle 5km's on Wed! Yikes! Oh please let me finish in less than eleven hours :)

So come on, folks, we need to find just eight riders in fourteen days (Gee, that sounded a lot simpler in my head). For further details, email me at nicky.debeer@telkomsa.net

Monday, September 12, 2011

Hurry! Hurry!

As I frantically switch the computer on, grabbing a bowl of cereal while it starts up (yes, it IS 11:38am already but it's the first chance I've had to have breakfast) I am already mentally typing my post in order to waste no time. You see, it has just taken forty minutes to get Protesting Smurf to sleep and I guarantee he will stay asleep for less than half of that.

So, a quick review of the past week....on Friday, as mentioned, we headed off to the paed with a temp, a cough and a snotty nose. Paed confirmed that Sam has croup...yet again. Started the oral cortisone and whammed him with a mighty dose of Pulmicort through the neb...



And when I say "mighty" it's no exaggeration, it took over forty-five minutes to completely neb the 8mls. We had to take a five minute break in between but, although he fought like crazy when we first started (as usual), eventually Sam settled down and just sat it through.

We've been having a really rough time getting Sam to eat. He was tolerating absolutely NO pureed food last week, not even porridge. In fact, there were two days where he ate practically nothing - thank goodness for Pedisure, which at least gives you peace of mind that he is getting some fragment of nutrition in. By Monday I was totally convinced there had to be a physical/medical reason for Sam's refusing to eat because at times he would open his mouth for a spoonful of food, but just not swallow it. He kept one mouthful in his mouth for over twenty MINUTES! He doesn't quite know how to spit the food out but eventually the food was reduced to nothing more than an orangey-slimey-glob and just sort of poured out of his mouth while he was crawling. So off we went to the GP on Monday, almost certain we were dealing with tonsilitis at the very least. The diagnosis? No tonsilitis, no weird obstructions in his throat preventing swallowing, no sores in his mouth...not even remotely red and/or swollen teething gums. Nothing except for a fairly mild ear infection and the persistent low-grade temp. (Did you gasp when you read "ear infection" and wonder to yourself why, if Sam has had continuous problems with his ears for the last four months, was under anaesthetic for another ENT procedure AND all the equipment to insert grommets/tubes had been rushed to the theatre moments before Sam's op because Dr S was so certain Sam would need gromments - why they weren't put in? I, along with several other doctors, have found ourselves wondering the exact same thing!)

So off we went on Monday afternoon, with another antibiotic but still completely baffled as to why Sam was not eating. Over the past couple of months I have slowly being introducing small amounts of "normal" food into Sam's diet, largely because I could see he was quickly becoming bored with purity especially because he is so incredibly fussy and eats only a tiny variety. So on Tuesday I thought that this HAS to be the problem...Sam wants to eat "normal" food all the time. I made him a bowl of instant noodles (cooked to almost a pulp, of course) and he ate it. I thought "Yay! Problem solved. My little smurf is just growing up!" 


As if it could possibly be that easy!

On Tuesday we decided to make a last minute reservation for Goudini Spa. Sam's croup seemed to be gone, he had been in better spirits on Tuesday morning and after our lunchtime success we were all feeling a little more positive. Meghan left on Wednesday morning for her very first school camp, it was a very stressful couple of weeks leading up to Wednesday as she is very much a "homely" little girl and not always comfortable spending time away from home. It would be first time she would be sleeping out of the house in a good couple of years. After a rather teary farewell (on both her's and my part) on Wednesday, we packed up and headed off for Goudini. Although Sam's eating victory was short-lived and we were back to almost force-feeding him by Thursday, the rest of our little "vacation" was awesome. The resort was a little busier than we expected, just enough to feel like we weren't alone but peaceful enough to just do what we wanted, when we wanted.

Of course we went prepared and packed Sam's dvd player in so that he didn't have to miss out on three day's of number counting!



The outside rock pool (exclusive to our little circle of bungalows) was literally a stone's throw away from our patio. On Wednesday afternoon it was warm enough outside just to make do with this pool, but by Thursday morning strong winds had set in and after some afternoon drizzling, we resorted to the undercover pool.


Sam *LOVED* the warmwater pools (there's a little video of him at the end of the post)!

Just taking it easy on Saturday......

And so, for our next really REALLY big news....Sam has an iPad! The topic of Sam's communication capabilities, or lack thereof, has been one of the main topics in our home lately. Although at one point Sam seemed to show some aptitude towards signing, we have stagnated and he makes very little effort now with this at all. He can, to an extent, communicate certain things to us by either gesturing with his hand or actually physically taking our hand and, say, putting it on a book he wants us to read. Also, as with many of Sam's RTS brothers and sisters, Sam's receptive language is excellent. He almost daily takes us by surprise by understanding things we say to him, or even to each other. There was a time when Sam did do some baby-babbling, but he hasn't done that in months and now most of his verbal language consists of grunts or a really lovely kind of sing-songing! Of course our heart's desire is that Sam will talk one day, but we need to be realistic as well and make all possible resources available to him which might make it possible for him to communicate with us. Speech has also been a regular topic on the RTS listserve recently, which couldn't have come at a better time, and one comment I read which stays in my mind and was a definining moment for me was this one (hope you don't mind Kristi) :

"Even though it's not Noah's actual voice on his I pad it is still his thoughts. So to me it IS his voice."

So Chris and I chatted...and chatted....and chatted some more. We decided that Sam will undoubtedly benefit from the the iPad, even if he is not able to fully utilise it from the beginning, and the knowledge that a large number of Sam's RTS brothers and sisters rely very much on their iPads for communication pretty much had us convinced this is the way we want to go. Our only concern and obstacle was the price of the iPad. And that's round about when Sam's precious Aunty Anthea stepped in. As a mom of two special needs girls and being extremely passionate about giving non-verbal children a voice, Aunty Anthea was desperate for Sam to have the iPad and so contributed a large portion of the cost thereof as an awesome, totally unexpected, hugely appreciated gift to our Sam! How amazing is that? We can never thank you enough, Aunty Anthea, or fully express how grateful we are to you for making this possible for us and for Sam of course xxx



So, we are slowly introducing iPadding Smurf to this lovely new device. We have looked at a couple of communication applications so far as well as some fun apps for Sam. I am hoping to make an appointment with the ST before the end of the week so that we can also have a professional input as well...but it is soooooooooooo exciting!





In closing, a videa of Sam in the warm pool at Goudini. Just before I picked up the camera, he was acting like a crazy loon...squealing and so on, but decided "less is more" by the time I pressed "record".
video


P.S. Sam has now been asleep for 1hr57mins.....that's the longest sleep in over a week....WHOOP! WHOOP!