And here's why...

...(for those who might ever have wondered) it is not a fab idea to have your overwhelmingly anxious child's dentist located in a shopping mall you frequent. Beeeeeecause...surprisingly...when three consecutive trips to said mall are purely for dental consults (the last of which ended in Meg and I discreetly trying to dispose of a margarine tub full of puke) certain smurfy lil dudes presume that every visit thereafter will involve more of the same. So it was with a touch of our own anxiety that we went off to run a few errands recently. When merely walking towards the entrance (on the completely opposite side of the mall) Sam transformed into a teeth-chattering, uncontrollably-shaking little bundle of nerves so Meg and I agreed to make it a super fast dash through the necessities, avoiding that side of the mall at all costs. How entertaining to, literally moments later, bump into.....guess who....Sam's dentist. Eeeeeeekk! After a quick exchange of niceties and firm reassurances that Sam was not, in fact, succumbing to hyperthermia we rushed through the centre like a couple of crazy loons and came out on the other end triumphant! I mean really, every puke-deprived outing is something to celebrate, right?

 

After spinal cord surgery, 2 x testicle surgeries, thumb surgery and a few ENT procedures here and there who would have imagined a dental procedure could be anywhere near as traumatic. After having our original theatre date bumped further along thanks to a doctor and his ego (not even gonna go there) which resulted in an unnecessary additional consultation (which would be the one that involved that dodgy marg tub disposal) we eventually made our way to the day hospital last week Tuesday. On the agenda was the removal of one tooth on the side which the dentist suspected might have had an abscess on it for some time, filling what ever else required it, applying sealant and then the removal of that little front, chipped tooth which was the one we were most concerned about as, having ground the tooth literally down into the gum, Sam had left nothing left to be gripped which meant the tooth literally had to be cut out of the gum. Sam was relatively calm until the moment we entered the theatre. Whether it was the absence of a pre-med, the presence of the dentist or the fact that the gas was administered at a much slower rate than usual...or a combination of all three...Sam freaked out. And by freaked out I mean he kicked, body slammed, smacked and pulled anything and everything he could make contact with. It was by far the most traumatic anaesthetic out of eight, we've ever experienced and left me feeling extremely unsettled and disorientated as I made my way back to the ward. Once the almost two-hour long procedure was over the dentist came in to advise that all had gone well. There certainly had been a nasty abscess on that one tooth which had drained once she pulled the tooth. She advised that both sets of stitches would dissolve in about 8 - 10 days and shortly after that we were on our way home. Over the next couple of days I kept a careful watch on Sam's wounds, focusing mainly on the front one where the tooth had required cutting out as it looked a little more "brutal" than I'd anticipated. On Tuesday morning I noticed that the gum where the abscess had been was very red and inflamed. I took a pic and e-mailed it to the dentist :

 

 

She felt that Sam might be having an allergic reaction to the suture and suggested I try removing the stitch. Um...sure...why not? After trying for almost an hour on Tuesday evening, I could not get Sam to stop flapping and head-rolling long enough to get hold of the stitch although he'd quite alarmingly allowed me to fiddle around in this mouth without much protesting. On Wed I took Sam off to the GP to see if she couldn't perhaps remove the stitch but once again Sam's flapping got in the way and so we made our way home with both the stitch and a prescription for an antibiotic to at least try and clear up the infection. On Wednesday evening, desperate to just put all this toothy business behind us, I lay on the bed with Sam and every couple of minutes would snip lightly at the knot and low-and-behold the darn thing came loose after a couple of tugs. Wooo Hooo! Hopefully the antibiotic successfully does it's thing and we don't have to even think about a dentist (nothing personal of course) for another six months.

 

Other than all things tooth-related, life has been low-key with the exception of a particularly exciting walk around our local pond all thanks to a psycho, stalker bee who mistook me in my violet fleece top to be a giant helping of something pollen filled and despite hysterical screeches and bee-deterring dances (much to the delight of fellow pond-visitors) lay in waiting as we completed our stroll to launch yet another farewell attack. Thankfully the random stroller parts which were hurled at it and frantic swiping and side-stepping eventually allowed us to escape. From now on, only black or grey garb shall be worn on sunny winter days when trying to remedy a bit of cabin fever with a leisurely walk. Pfffft.



One of Sam's current fads...umbrellas! We are so passed the whole "opening an umbrella indoors is bad luck" scenario :D

 

And for sure the only kid who is more fascinated by the scrolling numbers on the dvd player than the actual dvd playing.

 

It was several kinds of wonderful to get out of the house on Friday and spend some time with fellow journeying moms, made that much more appreciated by being treated to lunch by the Daniel and Friends Fund ladies, as well as each being sent home with a pack of nappies and tin of Pediasure. It being a different mall to that mall Sam was pretty chilled, despite it being over a busy lunchtime, and absolutely adored all the attention he got and precious new friends he and mom made...a truly blessed afternoon it was...

 

 

Many thanks to Marilyn, Kate and Lianie xxx

 

World RTS Day ♡ Why awareness is essential

Today, all around the world, hundreds of families are celebrating challenges overcome, journeys embraced and the incredible bond which exists between us,  all brought into being through a shared diagnosis of Rubinstein-Taybi Syndrome. A common sentiment rings loud across many...Rubinstein-Taybi Syndrome (or any other condition for that matter) does not define who our children are. 

I do still feel quite strongly about a particular element of our World RTS Day.  RAISING AWARENESS. And here's why...

Sam was delivered through an emergency c-section, two months prem, in severe distress. There was no cuddling on the delivery table, no pics snapped through happy tears by dad. In it's place a blue, lifeless body... barely 3 apples high... (aaahhh...smurf?) was whisked briefly over me to an awaiting incubator amidst mutterings of "abnormal" and equally devastating words.

Before I'd even had the chance to meet my little smurf, the paediatrician delivered the diagnosis. Rubinstein-Taybi Syndrome. 

The prognosis? 

Sam will never walk. Sam will never talk. A high risk of cancer can be expected, as can an average IQ of 30. A feeding tube was on the table as too was a look into a 'home'. No cruel intent on the part of the paediatrician,  he was sharing what he knew of RTS...which, having never heard of it before, was precious little. Hours later I made my way to the NICU filled with mind-numbing fear of what RTS was going to look like, feel like. But lying in that incubator, attached to an oscillator and way too many other tubes and needles, was a now purpley-blue little form...still barely 3 apples high with an oversized white hat. For me the diagnosis and subsequent prognosis fell into a deep, black hole to be revisited some other time...there was just too much loving and bonding and nurturing happening to care. 

But what if I wasn't me? 

Considered a high-risk pregnancy because of my age, my gynae asked early on into my pregnancy of I would be opting for an amnio. My answer was no, regardless of the result of any test termination would never be an option for me. Not at all a judgement, merely a fact. But what if I was perhaps a very young woman, unmarried, at the start of a promising career or even without any hope of financial comfort and not particularly swaying to either abortion or pro-life with any substantial conviction. What if, early enough into my pregnancy, RTS was suspected and I was delivered the exact same information? My choice, sadly inadequately informed, might well lead me to a decision which deprives the world of one more RTS sweetie. 

Raising awareness of Rubinstein-Taybi Syndrome, and other rare and unknown conditions, is vital. It will ultimately lead to doctors who are better equipped to prepare parents for the journey ahead by immediately creating a trusting affirmation that he/she knows what they're talking about and not merely rushing frantically to the nearest search engine to consume the exact same medical entries we as parents can. Sharing details or posts of fellow RTS families could help diagnose those who through lack of limited resources have slipped through the system. A perfect example for our avid Mr Tumble fans - little Lauren! Family and friends instantly recognise her as a sweetie with RTS. Had they not known Sam, she might not have stood out from all the other crazy-adorable kids in those videos. I never miss out on an opportunity to educate, waiting eagerly for the slightest indication in any interaction with a stranger to do so...sometimes they have me at 'hallo'!

So what if our young, unmarried mother with the fabulous career and life awaiting her was told the following instead:

Your child might not walk...unassisted. But will move around like a pro with the assistance of a walker, however most children with RTS do actually walk unassisted and even participate in sports like soccer and baseball and so much more. 

Your child might not talk...the same way you do. However they are more than adequately able to express themselves through sign language and AAC's, sometimes with delightful quirks of good humour. 

An average IQ cannot be predetermined as all folks with RTS, while sharing many similar traits, are also unique in their development and abilities. However knowing all the numbers up to twenty by the age of 2 can be expected,  as too can colours, shapes and the alphabet by age 4 and 50+ hand signs. 

Your child might be prone to tumours and cancer due to the gene which is effected, being the gene which produces the body's binding protein and is responsible for suppressing tumors. But with the ever-increasing number of people falling prey to cancer, can any one person be excluded from this possibility. 

In addition to the above, your child might have to face many medical challenges like seizures, a tethered spinal cord, immune issues, feeding issues, reflux and a few more. But a home filled with humming, twinning, happy-flapping, joy, admiration, determination and unconditional love is most definitely on the table. 

Creates a different picture, doesn't it? Education, information,  raising awareness. Vital.

If you had to ask this awesome bundle of smurfiness if, even for just one second, he'd ever felt his life was not worth living- what do you think he'd say?

If you had to ask this mom if, even for just one second, this child was not worth loving - what do you think she'd say?

A Rubinstein-Taybi Syndrome diagnosis should not be the end of a journey,  but the start of one ♡

Little Mr Smarty Pants

There is a song...about balloons... and colours...on Youtube. It is called... wait for it..."The Balloon Song (for learning colours)". Go have a listen. I did try download the link so I could share this delightful song with all of you but it automatically starts playing this song of delight and as the lil dude is lying sleeping next to me I can think of nothing more irritating right now than having him wake-up and demand to hear The Balloon Song. 

And demand he will because Sam listens to The Balloon Song on average (and no, 
this is no exaggeration) about 50 times. Each and every day. And while I don't deny the role The Balloon Song has had in Sam learning his colours, it does not take away from the fact that it is the most stuck-in-your-brain-like-no-other-song-in-the-history-of-all-songs kinda song. And yes, at random intervals throughout the day we will all find ourselves, to our horror, singing The Balloon Song.

And yet still, none of us have quite memorised the correct pattern of the song as Sam has. On Thursday evening Sam and I were enjoying our usual bathtime singalong and started on our first rendition of TBS. I sang 'red balloon', Sam signed 'red balloon'. I sang  'blue balloon', Sam signed 'blue balloon'. I sang 'green balloon', Sam signed 'white balloon'???

Uh no Sam... it's green after white. Started over but the same thing happened. And again. Eventually I asked Meg to bring me the iPad so I could help Sam right. The song started (feel free to sing along folks)

'Red red balloon, floating in the sky.

Blue blue balloon, floating up so high. 

(See? The lyrics are riveting!) 

White white balloon.....'

Say what? What happened to green? Oh pish posh. Green? White? What's the big diff anyway? Lol! 

Only after did I think about the dangerous can of worms I might have opened by bringing the iPad into the bathroom but thankfully there was no request of this kind from Sam the following night. And nevermind twinning (a fascinating quirk RTS peeps have which requires that they be, for instance, watching the same movie on their iPad and the tele at the same time) Sam has now acquired Tripling... with TBS on tv, on his iPad and homemade balloon flashcards for that extra tactile effect!

We've had a bit of a disappointing setback with Sam's teeth. Sam was meant to undergo a dental procedure this coming Wed to (finally) remove that little chipped front tooth (little as in milktooth and the minimal amount of actual tooth left after being ground right into the gum by the bottom tooth). However the dentist's office phoned on Friday morning to say that there's been some or other misunderstanding and Sam's procedure has been rescheduled for the 23rd July. What??? I'm having to keep the kid on 4-hourly doses of painmeds to limit the amount of mouth-bashing and obvious pain and discomfort he's in. Just waiting till the 2nd was gonna be a long stretch, how will he manage till the 23rd. Very distressing indeed. We all know how awful a toothache can be. So we're trying to get another anaesthetist on board who might be able to fit Sam in on the 11th July... please hold thumbs that this works out and he doesn't have to endure another 25 days with this wretched tooth :( 

So about that further comment upon completion of processing...

...we received the official report from the neuro-paed this morning. Sam's newly adjusted diagnosis now reads Rubinstein-Taybi Syndrome, Cerebral Palsy and secondary Autism.

I knew it was coming. I attended a lecture a couple of months ago given by JP Maes on the Maes concept for physiotherapy in kids with CP or similar neurological disorders. I was tagging along as the very minor contribution to the "similar neurological disorders" group. Within minutes into the lecture both the information being shared by JP as well as the little boy being focused on in the  documentary, had me sitting up straight. There were just too many similarities between this little boy and Sam at that age. That, the information I Googled on periventricular leucomalacia and Dr neuro-paed's comments during last week's examination on lesions caused by brain bleeds in utero, abnormal reflexes, etc had me comment to Chris on the way home already that she was thinking CP.

The report also advised that Sam was aggressive and seemingly frustrated...and that he certainly has been for the last 2-3 weeks. So much so that we had to make like a hermit for pretty much most of that time. And yesterday we found out why at Sam's dentist appointment. He has three teeth which have decayed all the way down to the nerve and, according to the dentist, he must be in severe pain.

Aaaahhh...the joy of verbal limitations.

About two years ago Sam chipped his front tooth on some sushi (plastic Nemo in the bathtub). It was noticeable but not too problematic. A few months later the tooth was further chipped during an intubation. Over the passed few months Sam has progressively ground that tooth right down to the gum with his bottom tooth and about a week ago it started turning brown. Hence the dentist appointment which, thankfully, lead us to the two 'brown' molars at the back which haven't even properly broken through yet. So on the 2nd July we'll be doing our second and hopefully last anaesthetic for the year. A bit of a wait and not so wonderful theatre time at 11:30am, but what can you do  *shrug    

Sam's current infatuations are carousels and flags. (Thanks Mr Tumbles) The flags are an easy enough hit, a short drive just through town usually has Sam exclaiming in excitement. Carousels? Little bit of a more challenging find they are. Luckily there is a small 3-horse carousel in the same centre as the dentist. Walking passed it was an absolute squeal (literally) for Sam on Monday, which was a public holiday and ensured that the carousel was constantly being ridden by other kids, to Sam's delight. As with most of Sam's infatuations, he prefers viewing them from a distance and shudders in fear if you get too close.

Sam was so well-behaved at his dentist appointment yesterday and allowed a thorough examination of his teeth, albeit through some harsh sounding but luckily unproductive gagging. Seeing as he'd frantically started signing carousel the moment we entered the parking lot, I promised him a stroll plastit after our appointment. What a bummer!  Mid-week morning meant no carousel-riding kiddies for Sam to watch :(

My makeshift homemade 'safer' Sam-friendly variation on a flag...he seems happy enough!

xxx

Eating Matters

One thing about sensory challenges, life is never boring or predictable. And today's no-no's become tomorrow's acceptables at the drop of a spoon...and vice versa.  

 

Up until a couple of weeks ago Sam was sporting a ferocious Cipla Actin-induced appetite which was satisfied by nought and which almost always overpowered his sensory aversion to his usual no-no foods. One night, having just finished dishing up our supper, Sam spotted my plate of chicken and whatnots while I quickly pureed up his own food so that we could eat together. Sam kept pointing at my plate and signing "eat" and eventually, in the hope of trying to finish his dins off in peace, I obliged and gave him a mouthful and waited for the gagging.  A minute or two later his mouth was empty! I was like "What? Really"? I'm standing here mushing up meat and veggies while you just smoothly chewed your way through CHICKEN!"

 

Keen to make the most of this sudden new accomplishment I offered Sam another bite and yet another and then eventually we all settled down to eat. My eyes caught a glimpse of something brownish-yellowish on the wall. And then another such blob on Sam's play mirror and yet another on the floor. I asked Meghan to see what it was, but she just shrugged that she couldn't make it out. Closer investigation revealed the unknown matter....chewed up chicken! What a laugh we had. And a few days later when Sam insisted on some unpureed cottage pie from my plate we saw exactly how the chicken had landed up plastered all over the place...he would chew it to the point of no recognition and then frantically brush it off his tongue and just fling it. Funny little boy :)

 

I have since removed the Cipla Actin from Sam's meds as I think it was largely contributing to his misery by making him almost insatiably hungry but still offer him new textures all the time. This afternoon Meg and I had egg and mayo sarmies for lunch and Sam quite likes egg so I made him his own half a sarmie.  Sam still shudders with displeasure if you make him hold and bite his own food. If you break up a cookie and give it to him in a bowl he will easily enough eat it as it requires a limited amount of handling before it is safely in his mouth. But as yet he doesn't seem able to tolerate the sensation of having to bite off pieces of food...and his egg and mayo sarmie was no different. Every time the filling touched his mouth he shuddered. So this is how egg and mayo sarmies are eaten in Smurfville...

 

 

 

So at last week's neuropaed appointment, Sam was prescribed some Risperdal to try and manage his, currently, very high sensory and anxiety issues. I was really worried about having to try yet a new med but NNP assured me that Risperdal is very often successfully used in children with Autism. We are on Day 6 so far and although we were told that we could only expect to see a real difference in about 3 - 4 weeks, I do have to admit that there is already some improvement with being able to cope with issues which would usually send Sam over the top. The previous Sunday we had attempted a short trip to a local shopping mall...it lasted all of about 30 seconds and ten steps into the mall before Sam just freaked out and he and I spent the remainder of the trip in the car singing "What's your favourite colour?" This passed long weekend we managed not one but TWO shopping trips with very little difficulty. In addition, as hoped for by NNP, the Risperdal seems to be having an effect on Sam's sleeping too and we've had only two really disruptive nights out of the six. Here's hoping this is that much-needed light at the end of this particular tunnel :) Tomorrow's dentist appointment is going to be the real test (Eeeek).

 

 





And when life becomes too challenging, we swing...... 

...and swing some more xxx 

This just in....

...just had a call from NNP who, after our consultation on Tues, thought it best to go over Sam's brain scan images with a radiologist.

She confirmed the presence of the periventricular leucomalacia, advised that the previous radiologist had mistakenly advised us that Sam's Corpus Callosum is in tact as, on the contrary, a third of it is absent...and kindly referred me to someone who could help both me and Sam with coping mechanisms for Autism.

*further comment to be uploaded upon completion of processing  :)

Hey! I was happy in Holland :(

There must be very few special needs parents who have not, at some point,  read through the piece by Emily Perl Kingsley...

 

WELCOME TO HOLLAND

 

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

 

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."But there's been a change in the flight plan. They've landed in Holland and there you must stay.The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland."

 

 

And the thing is, I was doing quite okay in Holland...tulips and windmills have become my 'thing' and I have become very passionate about the lovely things in Holland that those in Ireland miss out on. 

 

But now, after five years in Holland we're being pushed along to Belgium.and I'm like NO! That's not fair, we've laid our hearts in Holland. Why weren't we at least given the choice, seeing as we were bumped from Ireland, of whether we would prefer Holland or Belgium. I mean really! It's.just.not.fair! Okay sure, it's not like we're off to Egypt which would be a more radical change but there's only so much vacationing a person can handle. And if we absolutely HAVE to go to Belgium couldn't somebody have told us that in the beginning? Like hey guys, instead of going to Ireland you guys are going to Holland AND Belgium...some times you'll spend a fair amount of time in one before needing to cross over to the other but there will be times when you'll have one foot in Holland and another in Belgium. 

 

Yeah, that would definitely have made for a much smoother transition. Smooth is just not how this ride has being going lately...

 

The amazing news that Sam does not have the Agenisis/partial Agenisis of the Corpus Callosum more often associated with Rubinstein-Taybi Syndrome and that there has been no retethering of the spinal cord, had us all in a jovial mood and so we planned Sam's first ever birthday party. 

 

I suppose I can be 100% honest and say I truly believed that Sam would be walking by his 5th birthday. Heck, I thought he'd be walking by his 4th birthday. I read an article round about the time of Sam's birthday about 'living loss' or recurring grief which effectively is repeatedly dealing with the loss of the child you thought you were going to be bringing into this world. While I completely relate to the concept of the recurring grief (which can be brought on by occasions like birthdays) I do believe that, in spite of his RTS and more recent additional 'issues', the little personality inside from which shines his sense of humor, his affection and his smurfiness, is the very essence of Sam which would be the same regardless of the 'packaging' it came in. For me it's not so much a case of mourning the loss of the child I never had but more mourning the struggles the child I do have, has had to battle through and more heartbreakingly, those still to be encountered. 

 

The Monday before Sam's party I was asked to forward the MRI report to the new neuro-paed we were scheduling an appointment with. Only then did I realise I'd never seen the report so requested a copy from the radiologist and forwarded it on, only taking the time to read it myself a couple of days later seeing as I already knew what was in it. Or so I thought. 

 

And there it stood in black on white that the Corpus Callosum is in tact and that no syrinxes have formed on the spinal cord as a result of the original tethering. It said that the conus now lies on the L3 vertebrae which I can't say I was fabulously impressed with but because no post surgery MRI was done we don't know if this is the original post-op result.   

 

The report also contained the following :

 

"Multiple periventricular low T1 cysts are demonstrated likely consistent with Periventricular Leucomalacia sustained during perinatal life.

 

A lumbar segmental anomaly is identified with sacralisation  of a lumbar-type vertebra....Contiguous disc bulges are identified at the L3/4, L4/5 and L5/S1 levels.

 

Spina Bifida from the L5 to S2 levels.

 

Supratentorial, periventricular leucomalacia is identified."

 

Turned to the front page to make sure this was definitely Sam's report. It was :(

 

Well Hallo Belgium!

 

After reading through more of the report and with a little help from Prof Google it seems that the correct term for the lower vertebrae condition would be Spina Bifida Occulta . And the rest of the stuff? Who knows. Thankfully though our appointment with NNP (new neuro-paed) was bumped up from 22 August until, well, this afternoon...in almost exactly two hours to be precise. That type of being bumped I can handle.

 

But despite feeling a little blindsided by all the new info and more than a little battle-weary, we partied :)

 

Jumping Castles are one of Sam's current fads...so Aunty Cammy insisted on providing him with one for his birthday.

 

Fad or not, Sam was a little unsure at first but soon got into the spirit of things

 

Teletubbies meet Buzz Lightyear...Telebuzz's? Buzztubbies?

 

 

Another, rather trying fad, books! books! books! Sam goes nowhere without a book, he bodybashes himself to sleep holding a book and more often than not falls asleep on top of it, he swings with a book, eats with a book, has a nappy change with a book. So can you imagine how much fun bathtime is? And yes, we've tried the waterproof baby bath books...they just don't provide the same quality of sensory input that flipping through pages and biting covers does. Until we find a suitable alternative or until (oh yes please) this fad passes, bathtime every evening will be accompanied with hysterical help-I'm-being-murdered-screeching blaring from our home.

After a wonderful long Easter weekend in Stilbaai (although less than wonderful journey there compliments of the frightening number of reckless drivers on the road Thursday evening and a very grumpy smurfy dude who was not dealing well with the traffic delays) we started our week with Sam's MRI on Tuesday. I was a little tense about Sam being only third on the list and managing till 10:00 am without his morning bottle but with the exception of a few iffy moments where he seemed on the brink of a major wobble, he actually surprised me by managing even longer as the MRI department only sent for Sam at 10:40am. The entire scan took about an hour and forty minutes. The anaesthetist initially planned on trying to make do with a Laryngeal Mask as opposed to going with the compulsory intubation as per the RTS Medical Guidelines, seeing as there was no real procedure taking place. Sam having had seven previous anaesthetics, all with intubation from the onset, I was curious as to how his airway would react but the anaesthetist reported that Sam's airways collapsed almost immediately and so she had to intubate after all. At least now we know for sure that it's completely necessary and most definitely compulsory. 

 

Also as a precaution, an IV was placed... in Sam's right hand. The right hand of the same kid who almost always spews his stomach contents at the slightest contact from anything remotely resembling a plaster. Once again we couldn't even secure his hospital Id tag around his wrist upon admission. So an IV? Simply asking for trouble, despite there being no stomach contents to spew. Before even opening his eyes properly Sam started trying to bang the plasters off his hand, stopping only to alternate with frantically trying to pull it off himself. Before we could be discharged Sam had to have had something to drink/eat and passed urine. After a while the nurse eventually agreed that as long as the IV stayed in Sam's hand there would be no drinking or eating happening. Once it had been removed the starving little dude, now 17 hours since his last Pediasure intake, polished off a bottle, a bowl of jelly and custard and a yoghurt to follow when he repeatedly signed more. Sort of explains his sporting a healthy 16.9kg's on that no-so-smurfy-anymore frame. After waiting patiently for a wet nappy which would normally okay a patient for discharge, I shared with the nurse that Sam can go anything from six to sixteen hours without urinating especially when there are constipation issues at play (inevitable with anaesthesia) and so we left the hospital shortly thereafter...minus a wet nappy and the MRI results. 

Feeling a little sorry for himself

 

But still managing a smile

It was a little disappointing leaving without the results, particularly because with the last MRI they were sent to the ward almost immediately. The radiologist though had requested the previous scans images and reports which didn't quite make sense to me as I felt that having a completely 'fresh' review could hardly be a bad thing but nevertheless rushed the package along to the hospital early Wed morning, with a more than usual wheezy Sam in tow. By lunchtime on Thursday, after still no feedback, I called the neuro's office and was assured that he had received the results but was still going over them. Concern started creeping in at an alarming rate. 

Eventually on Friday afternoon the neuro guy called. Pheeeeeeeeeew!

He said that Sam's spinal cord was a little more low-lying than normal but a definite  improvement at L2 as opposed to L4 pre TSC surgery. He also shared that sometimes with a tethered spinal cord, the stretching of the cord can result in a Syrinx (or several) in the cord which is effectively little holes which form but was happy to advise that Sam's spinal cord is looking very healthy. And then he shared a rather profound bit of information regarding Sam's brain scan! 

Brain scan? Didn't know Sam was having a brain scan, did you? Nope? Me neither! For like forever I've whined about how intriguing it would be for Sam to have a brain scan to confirm whether he has the Agenisis/partial Agenisis of the Corpus Callosum often associated with Rubinstein-Taybi Syndrome. Not because it would cause an earth-shattering change to life as we know it but in the hope that the knowledge, if confirmed, together with more relevant and deeper research might lead way to my being able to sort of more effectively focus on the areas of development which Sam seems to struggle with the most. I guess a better way to describe it would be an incessant fear that I am missing something, that there is a wasted opportunity to help Sam reach his utmost potential simply because of ignorance or lack of knowledge. Watching as many of Sam's RTS siblings achieve milestones Sam has yet to conquer, often at less than half his age, has for sure left me wondering sometimes. Not jealous. Not bitter. Just really puzzled. So with Sam seemingly determined to even do different differently I would expect nothing short of a puzzling brain scan. And puzzling it was. Sam's scan showed a *normal* brain. 

Hysterically happy dancing? Absobloominglutely!

I waited in silence after the doc delivered his news for the "But..." only to hear the neurosurgeon admitting with amusement that he too had been a little surprised, so much so that he had phoned the radiologist to double check that there had been no mistake. The radiologist reassured him that Sam's Corpus Callosum is completely intact and very much present. The doc explained further that apart from tiny bubble-like cavities surrounding the blood vessels, most often associated with IUGR (which I confirmed being diagnosed with at 24weeks), referred to as luposomethingcephaly (my brain was struggling at this point with the wave of thoughts bombarding it - sorry) Sam's brain appeared as that of a typically developing child. How incredibly fascinating. The next step now is perhaps a little less jovial - a referral to a   developmental paediatrician to rule out any additional issues at play in that awesome little mind. We know there's the Sensory Processing Disorder which I've often complained seems more of a challenge to Sam than anything else. Who knows. I'm not even going to try and entertain my own assumptions at this point xxx

Shake it up baby now....

...twist and shout!

I have no conscious recollection of Sam ever having heard that song but somehow it must be playing over and over in his head because the second his pushchair rolls through the door of any shopping mall that's precisely what happens. We make sure that every shopping trip is accompanied by the ipod competing with the usual mall-raucous to belt out Heads & Shoulders and other equally delightful kiddies songs, which tunes are accompanied by a little dude whose entire body shakes, flaps, twists and occasionally squeals...not always harmoniously...in response to the music. And when I say entire body I mean it in every essence of the word....head,neck, arms, fingers, wrists, legs, feet and even the palm-tree-like tufts of hair on his head each go off at their very own rhythm. It inevitably creates a reaction. More often than not it's a friendly smile or lighthearted utterance about him being happy, etc. But sometimes it's a plain and undisguised stare, the kind where the deliverer of said stare glances out of the corner of their eye, quickly looks straight ahead with obvious feigned indifference and then just as you're about to pass from their view they do a sudden Ace Ventura-style headwhipping to take a better look at the blur of movement being barely restrained by the straps of his stroller. It's a fascinating scenario. I've only ever met two other kiddo's with RTS and although we've never strolled through a shopping mall together, I don't believe they are quite as twisty-flappy as Sam which makes me wonder if there are any other RTS kiddo's who do it and how their folks deal with the attention. Some days I just ignore it, some days I play a little private game where I try turn my head at the precise moment I think the Ace Ventura-style headwhipping will take place. Some days, like today, I'm just not up to it. So when we headed down to the mall this evening  left the ipod at home. And? There was twisty-flapping galore. It ain't the music on the ipod he's flapping to so it's gotta be the music in Sam's head :)

So on Monday we had our  appointment with new Neuro guy. It was an interesting process just getting to the hospital. Sam's bowels had been a bit sluggish so I'd increased his Movicol for a day or two which means, in turn, that there'd be a day or two of 'cleansing' when the Movicol kicked in. Would it be our life if that day of cleansing did not happen on Monday? Absolutely not. Sam had two relatively large nappies early in the morning so I felt we'd be free from the chaos always caused by Sam needing to be lied down for a nappy change any place other than my bed. We left the house en route to Aunty Justine's, a total journey of about 8 mins, in which time Sam delivered the ultimate cleanout I thought we'd already conquered. Rushed inside and worked through a tense but manageable nappy change saved only by the fact that it was being done on a bed at least. Then in the following eleven/twelve minutes max it took to the hospital, yet another cleanout was delivered! Seriously? Granted not as explosive as the previous one but without the safety of a bed to clean it on. So I drove to the very end of the parking lot, completely isolated from any other car where hopefully Sam's freaking out would not be heard by anyone. Arrived just just on time for appointment, ridiculously flustered. Luckily the 37 mins we waited gave me some time to catch my breath and cool down. New neuro guy is really nice so 37 min wait was quickly forgiven. He gave Sam the best possible examination you can perform on a squirming protesting little dude, we chatted about scheduling another MRI and then he asked me to please bring in the original post op MRI disc for comparison, which posed a very slight problem in that there never was a post op MRI. Seriously? Well better late than never right? Even though it's approximately 3yrs late. #eyeroll

So leave docs office and make my way through the door only to come to a grinding halt. The sunshine we'd arrived with had been replaced with a strong wind and drizzle. Firstly, I very VERY seldom wear skirts. I had a skirt on. And not just any skirt...an A-line and particularly flairy skirt (I so wished I'd done the ironing on Sunday night like I'd originally planned). And secondly, I'd parked as absolutely far away from the door as I could. I awkwardly maneuvered myself and Sam to the paypoint, trying to maintain my decency, shield Sam's summer-clad little body from the elements and pay my parking card at the same time. Grabbed the coins from the change drawer and dashed to the car, unlocking it and unfastening Sam's straps while looking in my bag for my paid ticket. The ticket. Nowhere to be found. S.E.R.I.O.U.S.L.Y!

I hadn't taken it from the machine.

Refasten Sam, relock car and dash back to the paypoint like a, now,frizzy-haired loon. Of course the ticket wasn't there, that would be too easy. Luckily the security guard remembered me being there just moments before and scooted around the entrance, thankfully finding my ticket caught in some plants where it had blown. Amidst mouthfuls of wayward hair, uttered my eternal gratitude and offered a repeat display of comedy departure. Yes...seriously.

The hospital phoned today to say that Sam's booked in on Tuesday already which is a little short notice and only at 10am which brings with it it's own set of challenges trying to calm a starving little Smurf who doesn't understand why he's being deprived of his morning bottle an porridge. Let's just pray that it's all made worthwhile by an MRI which clearly shows that there has not been a retethering of Sam's spinal cord.

And sleep? Well those glorious 14 nights we were spoilt with a couple of weeks ago don't seem to be making a comeback any time soon. We're back to 4-6 hours of thrashing around at night, mostly caused by an impossibly congested nose despite Sterimar and Iliadin sprays, eucalyptus misting and Karvol drops on the linen. Last night though Sam seemed to have an intense, unbearable itch all over his body. And tonight were doing continuous apnoea's.

I tried to sneak some time on the computer to have a go at pimping Sam's blog a little but as you can see, it did not go well - just as I started Sam woke up. So please excuse the rather random design for now.

On Sunday we were invited to an Easter egg hunt by Iris House where Sam had such a good time and no matter how excitedly he flapped and 'danced' the only looks he got were those of love...

All a mom wants :)

I was absolutely determined to hold out posting until I got an opportunity to do so from my pc...well that worked out well, so here we are :/

Iris House Childrens Hospice contacted me last week to say they're coming to do a respite care sit yesterday morning so I had mentally prepared a jampacked four hours of ironing, taking up the hems of the several pants hung over my chair that I can't wear (would be hysterically happy to one day buy a pair of pants that don't need shortening) and then of course had at least a two hour blogging session in mind. However, the IH ladies arrived and Sam seemed so completely relaxed and 'okay' and there were a few errands I needed to run yesterday which were going to be a bit tricky with Sam, like needing to have a few docs certified at the local police station for Meg's high school application (Eek). Which local police station has only 2 very steep, very short steps at the entrance...no ramp in sight...very disabled friendly. I also then needed to go deliver the application which would entail having to strap Sam into his pushchair to walk up a sloped driveway with my dodgy, braced ankle just to literally hand the envelope over and leave again. Unfortunately, while the idea of a nicely laid out post with neatly, appropriately detailed pictures was attractive, the thought of ironing and sewing compared to an hour to myself was not. And so Sam had his very first 'solo' respite sit! And it went really well. He refused to drink his Pediasure which was sort of expected but I was only gone for just under an hour-and-a-half so that wasn't a huge trainsmash.

And the dodgy ankle brace means that I can finally drive again. Big whoop whoop! Which means that Sam could return to his therapies for the first time in  almost 8 weeks. I anticipated a really resistance-filled physio session on Friday but Sam surprised both Heidi and myself. Of course there was some moaning, but there always is. I actually think it would be fair to say it was one of Sam's most fruitful sessions yet and with him having four-and-a-half years of therapy under the belt, that's no careless statement! With my ankle taking so long to heal I've had to push Sam to see walking as the first choice of movement and not so much mom's hip. So wherever we've needed to go, whether it's the short distance to the bathroom or the much longer distance from the car to the door, I've insisted Sam walks it with me holding him steady on his waist. Realistically, he's still not going to walk any time soon (even though his 5th birthday looms barely a month away) but he's definitely becoming less afraid and fear is ultimately what's holding him back right now. Last week I needed to pop into our local Spar and decided to take Sam's walker along. It was the most entertaining trip we've ever had to such a basic store. Of course Sam loved that he was navigating his own way and gestured wildly while exclaiming with delight, in an especially sing-songy voice, at things he recognised like bananas. At the end of the trip the five items we purchased took us more than 45 mins but it was well worth it. 

We're still battling to secure an appointment with the neurosurgeon who operated on Sam's tethered spinal cord which is becoming increasingly frustrating for a host of valid reasons, not least of which would be that as he performed the surgery he is obviously the person you'd most like to do the follow-ups and also, we really liked him and his caring and compassionate nature, which is probably the reason why he's chosen to discontinue private practice and focus only on his work at the state hospital, where we are not welcome. Thankfully, by way of kindness, we've been referred to a new neurosurgeon. The orthopaedic surgeon taking care of my ankle insisted on giving Sam an impromptu and free examination at my last follow-up. He completely agreed with the need to have Sam undergo a follow-up MRI of his spinal cord and immediately requested his assistant schedule an appointment for us with the neurosurgeon just down the passage, who he highly recommends. So we see the neuro this coming Monday...finally!

I do tend to become emotionally attached to Sam's specialists. It takes me a long while to establish trust, so to have to keep rebuilding relationships can be a bit exhausting, not to mention the nagging guilt. But I do have to admit that I now absolutely advocate the need for very occasionally acquiring a new perspective. For eighteen months we have battled, unsuccessfully, to try and resolve Sam's sleep problems and find out once and for all what prevents him from resting peacefully and drives him to such extreme frustration that he resorts to hours of harmful body bashing, despite us having tried almost every medication available. As I mentioned in my last post (I think?) the prof paed we saw on 10th March changed Sam's reflux meds from Losec to Nexium. Sounds kinda insignificant, right? Well for fourteen consecutive nights Sam slept through most of every night. There would be an occasional 30 seconds bashing here and there but nothing even as remotely distressing as before. He's now unfortunately got a bit of a snotty nose so we're back to disrupted sleep again, but still very manageable. He's even been taking afternoon naps again, the shortest one being today of just over an hour while the others have lasted up to two/two-and-a-half hours. And a kid who's finally getting some decent sleep makes for a much more relaxed little dude all round... whether it's at therapy, in shops or spending five hours next to a hockey field each day for Meg's recent hockey tour.

Sam also seemed to be in a bit of a eating slump at the time we saw Prof paed so he suggested putting Sam back on Cipla-Actin and what a barrel of laughs that has been, he's now constantly starving. And where we had found ourselves back at that place where I was pureeing things like cooked-to-the-point-of-being-mush oats and even shop bought baby food (Yes, really), all of a sudden Sam was eating pieces of apple, jelly tots and even chocstix (chocolate covered pretzels). And anyone eating in his presence without his own mouth chewing is a no-no. We were at a braai (BBQ) one night, Sam having had his dins much earlier, and I was just about to bite into my rib when a little hand reached over and slowly guided the meat to his own mouth. If it wasn't for the chilli spice on it I might have let him take a nibble just to see his reaction. 

Sleeping and eating.... what more could a mother want for her child? Okay... maybe pooping. Oh...and talking...and walking would be nice too :)

Ending off with pics ♡

For a kid with such major sensory issues,  Sam is very tactile and usually needs to be holding onto someone whether it's Meg's hand in the car, Mom's hand while he iPads or Mom's arm while he sleeps. I adore this part of Sam ♡  

  Another cute habit Sam has is what's commonly referred to by our RTS community as 'twinning'. Twinning is basically when, for instance, our kiddos want to watch the same thing on tv and their ipad at the same time. It can be quite tricky successfully timing both devices perfectly but I have to say we've quite near mastered it.  

   It's such a 'smally' for some but the fact that the lil smurfy dude can transition into a sitting position independently again still makes me so happy. No achievement is sweeter than when accomplished despite challenges, lost through trauma and then mastered again ♡

    Sam getting some much-missed flapping in next to the hockey field

     Making himself at home at Overmeer Guesthouse    

      Dad kinda loved the kingsize bed... less chance of being whacked by a stray,  thrashing arm  

       The only time Sam slept during the six hours there and the six hours back - and this snooze lasted all of about 15 mins. 

        Meg on the other hand slept almost the whole way... not unusual for her

        

Sam's early birthday pressie from Bramps 

H'so Samuelson

Only eight more sleeps till I lose my not-so-airy Aircast *happydance Honestly, I really thought the 'air' in Aircast implied that the boot was super lightweight. It isn't. I was beyond despair the first couple of days thinking the injury was so much more devastating than I'd thought if instead the boot seemed downright chunky and heavy, anything but airy. Was I ever amused to finally discover the little dial and round knob-type thing actually pump air into the cast. Aaaaahhhh...air! I am at least thankful that the boot enables me to move around without crutches and I've even been able to carry Sam a little. Any time off those knees is a huge relief but he seems more and more reluctant to walk with us. So we've created a really complex (not really) little game which involves whoever is willing to walk in front of Sam chanting "Left. Left. Right. Lift" and on cue the lil smurfy dude will lift his right leg, but only his right leg. If the chant stops on the wrong leg he takes great pains to switch over.

Somewhere out there there's a village with a karate kid-deprived parking pillion with your name on it my boy! 

To say there's an element of cabin fever in Smurfville would be an understatement of note so we thought it would be a good idea to go watch the last hour of Meg's evening marathon at school last Friday night. We drove the exact same route we've driven at least once every school day over the last seven years so a vomit episode triggered by encountering unfamiliar surroundings would not be called for, right? Wrong! No.1 it was dark and No.2 we turned through a different gate. Seconds later the little dude was hurling his dinner out.  Just a coincidence,  you might think...a case of bad timing perhaps? On Saturday morning we popped down to the local traffic department to collect my renewed driver's licence (you know, in case I get pulled over while going nowhere). Pull into the parking lot, I open my door and there the flood erupts. Nevermind the Terminator... The Vominator is back, in full force. Obviously with Sam and I effectively being homebound and him not needing to deal with the usual stress he faces with any sort of social encounters, we're going to find ourselves back at square one when I can eventually drive again. Something to look forward to.

On Monday Sam had an appointment with a new Prof Paed. We were a little anxious that upon entering the rooms Sam would instantly start throwing up. Luckily there were too many distractions. New Prof Paed suggested a new reflux med for Sam which is wonderful. I've wondered for some time whether Sam's sleep issues aren't related to his reflux but honestly didn't know there's an alternative to Losec. Because there's no chance that Sam would simply swallow half a Losec mup, I dissolve it in a drop of water and add it to his food (it doesn't go through the teat of a bottle) but if the Losec is not ingested with 10-15 minutes it basically becomes ineffective and Sam seldom finishes a meal in less than 30 mins nevermind 15. So the new med, Nexium, which is still Omeprazole, is simply mixed with a little water to form a completely flavourless syrup and given just once a day. Works like a dream so I think we've got the reflux sorted. Prof Paed shared the opinion of a good friend(who also happens to be a fab paediatrician) that Sam's urinary retention issues are almost certainly related to bouts of constipation Sam's had trouble with. A quick look in Sam's ears confirmed that the right grommet has already fallen out which is a bit of a bummer. The right ear is the problem ear and tends to react the moment the grommet falls out which is why the ENT  apparently used a different tube in the hope it would stay in place for at least 18 months. It's been only 9 months since the current set was inserted :(

Sam weighed pretty much what he has for the last six months, round 15.6kg's and stands just over 95cm's tall. That's just 58cm's shorter than his mom. Prof Paed asked if he could discuss Sam's sleeping issues with a colleague which had me impressed with both his caution and humility at not suggesting an immediate remedy. On Wednesday he called to say they'd come up with a possible option called Stilnox but that he would want to admit Sam overnight should we decide to give it a try as he is wary of Sam's reaction. That had me a little anxious but again grateful for his caution. At the end of the conversation we decided to wait it out a little longer before trying the Stilnox. 

Tracey from Iris House was spending the morning with Sam so I was able to have an attentive conversation with Prof. Shortly after the call I sat with Sam and Tracey and noticed Sam slipping into a sort of 'blank episode' which he's done before but not for quite some time. I've known for a while that many of Sam's RTS siblings suffer with absent seizures but have never been quite certain whether Sam's blank episodes were the same. Tracey confirmed instantly with one look at her that it was in fact an absent seizure and then confirmed it verbally too. At least now I know what to watch out for but there have thankfully been no more. 

Meg has been off on a school camp for five days, arriving home on Friday accompanied by a snotty nose, sore throat and coughing. Not great on its own but made more worrying by the fact that we leave for her hockey tour on Thursday. We've already joked about what kind of 6-7 hour trip we're in for if Sam's going to vomit with every unfamiliar parking lot we pull into. Yikes! 

To emigrate or not to emigrate...that is the question

It has recently come to my attention that my sleep pattern is no longer compatible with the South African time zone. I am generally wide awake from 12 am onwards so the only reasonable solution, at this insane hour, seems to be emigration. Perhaps spreading three kids out over sixteen years was not such a good idea...as each child eventually outgrew the early childhood sleep and health issues (asthma with Luke; croup, sinus and ears infections and eczema with Meg...and now Sam - nuff said) I went and had another baby. So after 20 years of motherhood assault my sleeping mechanisms have thrown up their hands and said 'you're on your own you crazy woman! '

Or it's the fact that at the ripe age of almost 40 I have a strict bedtime of 7:30pm thanks to Sam not being able to sleep on his own and refusing to go down with anyone else so, only ever having needed 4/5 hours sleep at night, I am bright-eyed and bushy-tailed by 1am (not so much by 2:00pm-ish tho). And this horrid cast and the subsequent rash it's caused on my shin doesn't help. Neither does the fact that Sam has upped his game from mere bodybashing to Tazmanian Devil style body-whipping. Why, you might ask. Because I have no faith in my own judgement, that's why. Chatted to Doc Paed last week about Sam's urine retention problem arising again (Did I blog about that yet? Sam went a record breaking 17 hours without a drop of wee) and mentioned that the lil smurfy dude is still not sleeping. Doc Paed asked if we should try Phenergan. With having a maximum two/three night success rate with Aterax and Valergan resulting in nothing less than an impromptu circus, the mind screamed DON'T.DO.IT!

The voice said...sure!

First couple of nights there was sleep but nothing fabulous. Last night the Tazmanian Devil arrived, literally whipping himself up the sides of the bed, pulling hair and trying to shred pillows with his bare teeth. So when preparing to get Sam into bed last night, Chris asked 'Phenergan?' (a legit question). The mind screamed DON'T.DO.IT!

The voice said...sure!

I've acknowledged I've been a long time sufferer of FIM Syndrome (Foot-in-Mouth) and my brain and mouth seldom seem connected but this is just ridiculous.

Just 1hr and 23min till my alarm goes off and 23 mins till the end of this particular loadshedding block, which never happened Woo hoo! Now I can get up and go to the loo. Didn't want to chance it during the scheduled times in case they decided to cut the power just as I'd stumbled up onto my crutches. My foot keeps going numb, especially at night, which is a little worrying as my cast is definitely not too tight. Even more worrying is Sam's lack of exercise since I fell. Before, he and I would walk around the house a good few times every day but he refuses to do it with anyone else and while I stretch his legs during the day, it's just not the same. I can already feel his tendons stiffening but what can I do? I can't even keep my own balance without crutches at the moment so don't feel comfortable trying to hold Sam up just yet. He's probably going to need more intense physio rehab than me :(

Sam's only happy place at the moment :

Twerking and ending the word

I wouldn't consider myself a term-o-phobe...unless it's a word meant in a derogatory way of course (I have no actual clue whether that's even a word so don't quote me. Would jump up and grab a dictionary quickly but with a 3ton contraption dangling from my ankle, there's not a lot of quick happening round here). It did not phase me at all to have Sam proudly featured on a Rare Disease Day banner recently...occasionally I have a little faith in my fellow human beings and their ability to consider 'disease' in this case in the correct context. And let's be honest, Sam is not the healthiest lil dude smurfing around and with things like autoimmune issues and the rest of it, illness quite often rears it's head along our journey with Rubinstein-Taybi Syndrome. Most things in life have an ambiguous connotation, sometimes you just gotta focus on what's real for you and not sweat the small stuff.  So,while I did twerk my post to read Rare Disease / Syndrome / Condition Day (Twerk? Really? Bleh...now I have images of Miley Cyrus assaulting my brain. TWEAK folks! I meant to say TWEAK!) I really enjoyed the spirit of unity and support displayed all over the social media and felt even more blessed when finding out that all seven of Sam's 'school friends' and their moms had donned jeans for genes. Too precious ♥

(Pics below as I am still figuring out this whole Android blogging app)

Yesterday was the official 'Spread the Word to end the Word' Day. People using the r-word as a means of insult in a derogatory way... that I do have a problem with. If it's a doctor referring to Sam's growth or development...sure, 'retarded' is an acceptable term. I can't say I agree with ANYONE referring to Sam's cognitive or academic abilities as retarded...yesterday, after several requests on my part, the kid correctly identified a  parallelogram out of four possible shapes... and not the boring basic shapes he's known for years, but more  challenging shapes like ovals and pentagrams. That's no mickey mouse achievement for a 4yr old. People referring to people/movies/situations/objects as retarded is nothing short of a neanderthal mentality. Really. Move on o' ye uninformed cavemen. People with intellectual/cognitive challenges are taking the world by storm...they have to work ten times harder to achieve what comes naturally to you, have to constantly prove that they are worthy of respect and acceptance...it makes them more diligent, more passionate and relentlessly determined. The only person whose intelligence requires questioning is the one whose vocabulary is so lacking that they are unable to produce a more appropriate word than the r-word. As I said,  occasionally...very occasionally...I have faith in my fellow human beings. 

So other than raising awareness and slamming ignorance, there's not much excitement going on in Smurfville. There could be what with night marathons,  crown birthdays, school camps, Iris House Easter egg hunts and hockey tours all happening within the next 3 weeks, I should be swept off my feet with anticipation. Well I'm swept off my feet alright, just for the wrong reason. Uugghh! So frustrated with this whole ankle story. But I can tell you one thing, it has given me a fresh perspective on the challenges people, and especially parents, with physical disabilities face. We most certainly take our bodies for granted.

In closing, I recently followed a thread where several moms debated whether SensoryProcessing Disorder and even a degree of Autism are both a part of RTS. While I absolutely agree that most RTS kiddies along with very many other conditions/syndromes afflicting children, are prone to sensory issues I can assure you that it is a whole different scenario to a child who has a completely separate and additional SPD or Autism diagnosis. To simplify, if you took the RTS out of some of our children would they still have those sensory issues? More than likely not. If you took the RTS out of Sam would it remove from his life  his inability to determine whether he is 1cm or 1metre from the floor, the confusing co-ordination which prevents him from being able to touch his nose when prompted, the debilitating fear with which he lives through each and every day of his life which prevents him from taking his first step, delighting in a slide at the park, enjoying his bath without cowering at the glimpse of a solitary water bubble floating behind him. Take the RTS out of Sam and we'd be doing a crazy loon dance at not having to deal with all these medical problems, but would the kid be in a different place  developmentally? Absolutely not!

Just wanted to put that out there. Reactions on some of the support groups have been a little fragile lately, feel safer here ;)

Sam's art class friends showing their support. Love.