Riddle me this....

Riddle me this
Riddle me that.
Some days are peaked,
Some days are flat.

Riddle me here
Riddle me there,
Senses unclear
Best beware!

This little dude's senses. A riddle, mystery and puzzle all on their own. Exhausting.

Over the past few weeks we're very very much back to throwing up all over the show again, not in the least bit reserved for unfamiliar places but seemingly more like at any place that's not home. We were visiting a friend recently who has an old-fashioned till in her school room. Sam was already anxious just about the outing in general. Meg was messing around by the till and pressed the little button to print a till slip but there being no paper in it, it simply made a funny sound. You can probably imagine what kind of sound - not particularly sensory disturbing, well not for us anyway but definitely distressing enough for Sam to throw up.

Again we're back to a fearful, plank-like extension when I try and get Sam to walk holding my one hand or using his walker yet a few weeks ago he walked all the way from the car into the physio rooms holding just my one hand??? And here's the doozey...completely fed up with walking around with soaking wet, long hair in the middle of winter thanks to not being able to use a vomit-triggering hairdryer I decided to give my hair the chop about 2 weeks ago. Still getting used to how quickly my hair now dries, after my shower this morning I hurriedly went about getting Sam ready for his physio session and happened to catch my reflection out of the corner of my eye as I rushed about. I looked like I had run headfirst into a Van de Graaff generator!

↑ If it wasn't for the hilarious notion of being able to sit down to have a cup of (warm) tea (Oh yes please) this would have been a pretty accurate picture. 

So there was little else to do but sit Sam down in front of me (for more effective vomit-catching efficiency) and switch the hairdryer on. I first only tried about 10 seconds then stopped, expecting to see that 'I'm about to share some projectile vomiting" face. Nothing. Tried another 10 second round, then longer, and longer. Nothing! I had just started my internal whoop-whoop celebratory dance at having (finally) conquered something sensory related when it hit me. I've chopped off my hair for nothing!  

Bum! 

Luckily, Sam's sensory challenges being the chaotic labyrinth of unpredictability that they are, I will quite likely pop the hairdryer on tomorrow morning only to have him shower us all in some or other partially digested substance. Oh the anticipation! 

So other than those fabulously entertaining sensory issues, there's been nothing particularly interesting to report. We've signed Sam up for the home programme at the Chere Botha School just to have a little guidance as to what next I should be teaching him. Having mastered numbers, shapes, letters and colours some time ago I am not 100% certain where to move onto next. While Sam's physical abilities are obviously compromised, the home programme co-oordinator was very obviously impressed with Sam's intellectual strengths, especially when I showed her how I 'test' Sam by drawing several balloons in black and then write the names of the colours inside (also in black so as not to give Sam any hints) and then set all the colour crayons out next to Sam. He will, without hesitating, correctly read the name of the colour needed and select it from the lot and colour the balloon in. Fair enough his colouring skills need a little attention, but it was a very proud mommy moment for me made even sweeter knowing that it's a skill I taught him myself ♡♡♡

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

 

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.

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! 

Nocturnal Smurf

Crocodile Samdee :)

Nocturnal Smurf was my original heading for this post after Sam pulled another all-nighter amidst several evenings of his usual sleep-challenged nights. Sam's only second ever art class was to be held at our house on Friday. It seemed like a good idea at the time but when Friday morning dawned and Sam had very few hours of sleep to brag about I started feeling a little anxious about Sam's ability to peacefully allow his friends to explore his territory. While Sam did not really participate in the art activities himself, he was unexpectedly okay with having the group in our small house and actually enjoyed quite a few delightful moments watching the others playing and putting on a show for him. Yes, there were one or two narrowly-escaped hair pulling and toy throwing incidents but at the end of the class I felt

the art class had been a successfully interacted experience for Sam, minus the actual art of course. 

Sam was fairly exhausted by evening and fell asleep quickly... and awoke just as quickly somewhere before midnight, not shutting his eyes again till 8:36am on Saturday morning for a two hour nap. 

There was bodybashing, crying, frustration, desperation... but no sleep. Oh... and there was fever... and vomit. Saturday and Sunday both flew passed in a haze of exhaustion and more of the above while trying to attend to necessary tasks, like laundry, in the 40ºc heat. Somewhere round 6pm on Sunday I remembered I'd done a load of washing and forgotten it. With the heat still stifling at that time I chose to quickly hang it out and it was in my haste that I trod incorrectly on an uneven piece of ground and popped my ankle. 

Off we rushed to the local trauma unit where after 4 hours of waiting and 6 x-rays the on call doctor determined it was just a bad sprain and after applying a bandage, sent me on my way with instruction to keep off the foot for a week. I was a little uncertain of her diagnosis but anxious to get home to my sick little man. 

With Sam being really miserable and clingy it was a little difficult to keep my leg elevated and while I didn't stand on the foot,  I most certainly had to resort to a little weight beating. 

By Tuesday morning Sam's temp was still hovering around 38ºc despite meds so I made a doc appointment for him. Chris' phone rang several times during the consultation from a somewhat familiar number but we did not want to be rude and answer it. Upon returning the call we were advised that my x-rays had gone to the resident orthopaedic surgeon who had found a fracture. 

Pretty handy info to have had 36 or so hours earlier, or what?

Next step (or rather clumsy crutch-clutched lurch) was the fitting of an aircast and the countdown to a follow up        consult on the 28th. Over and above the pain and discomfort of this bulky apparatus in the middle of summer is the rather heartbreaking issue of not being able to take care of my lil smurfy dude... especially when he is ill :(

Cloudy with a chance of vomit

Wow! Am I glad to see the back of this passed week - heck yeah! That brilliant night's sleep Sam had on Monday night? It was not a taste of more good things to come...rather a kind of cruel antagonising of what we're missing. So needless to say there was no sleep on Tuesday night, not many wet nappies but a whole lot of wet everything else as Sam indulged us in some fantastic displays of projectile vomiting.

Wednesday...I get tired all over again thinking about it. More of the same except with the added variety of an evening trip to the ER after Sam decided to partake in a little light acrobatics off the bed. Yip, screams of hysterical panic could be heard for miles...even Sam was crying. Once Sam had received a once-over by the on-call doc and bestowed generous amounts of his poorly digested dinner throughout the ER, he at least managed a degree of decent sleep.

I was thrilled to wake up to a wet nappy on Thursday morning and even though Thursday brought with it another bump on the head when Sam backflipped off his little push-bike, his bladder seems to have returned to it's usual 2-3 hour routine. And so too have we returned to a rather challenging 3hr average of sleep at night. While I'm sure grateful the lil dude's bladder seems healed, it definitely was not the contributing factor preventing him from sleep. A little disappointing...but we press on, a little baggy-eyed and cloudy-minded...but on nevertheless.

*yawn

Accessorise! Accessorise!

Move over Louis Vitton and Prada...I have recently acquired the ultimate fashion accessory.

 

 

Behold...the DNY all-purpose carry all!

 

Perfectly designed to catch and store the most ghastly of throw-ups with a large, easy-to-aim opening and readily disposable container. The product of a spontaneous brainstorming after last Friday's art class, when Sam spewed his entire stomach's contents all over the inside of the car, at the sighting of unfamiliar territory...before I'd even managed to get him out the car. 

 

This was the before picture...I thought it best not to capture the after picture LOL!

 

 

 

Several times over the days leading up to Sam's very first art class, I let him watch a video of children painting pictures, as well as on the Friday morning hoping to prepare him in a way for the morning's planned activities. I knew Sam would not hold a paintbrush, so opted instead for finger paints especially as he seems quite keen lately to try different textures on his hand, even textures which previously freaked him out, like bubble bath.  But of course before getting down to any painting there was the matter of transitioning him from familiar hence safe (car) to unfamiliar hence threat (never before visited home). Transitioning is definitely an issue with Sam at the moment...it's that vulnerable space between the safe, solid chair to the safe, solid floor.

 

My first reaction was to surrender and head our vomit-covered smurf home. But after encouragement from the wonderfully supportive other moms, decided to stay and although Sam refused any kind of painting and moaned occasionally, we spent a good hour just enjoying the other children proudly tackling their activities. 

 

Already caught up in a particularly challenging wave of anxiety, the severe lack of sleep happening in Smurfville is most certainly not helping at all. From Friday evening till Tuesday, Sam's sleep deteriorated from being awake roughly between 12am and 4am to less than two hours sleep on Monday evening. Sam woke just after 10pm and that was it, he bashed himself senseless and to the point of acquiring a few bruises, until just before 6am at which point it was easier to just admit defeat and get up. I was convinced there had to be something bothering him so went off to the doc but Sam received a clean bill of health. Sam's been having some urinating issues again and over the past few days going anything between 12 to 16 hours without a wet nappy has become the norm, despite drinking at least 1litre of fluid every day so I was looking forward to mentioning this at our neuro appointment on Wednesday, but quite distressingly the appointment was cancelled due to some sort of miscommunication regarding Sam's neurosurgeon's availability. We did do a urine test on Tuesday to rule out a UTI, which it did.

 

Another issue I wanted to raise at Wednesday's appointment was the possibility of Myoclonic Seizures. Quite some time ago I complained that Samuel's body twitches and jerks all through the night...his legs, his arms, his hands almost constantly and even his head. So much so that it lifts off the pillow sometimes.  Somewhere along the line I recall the term Myoclonic Seizures being mentioned on one of the SPD support sites. I paid little attention, reassuring myself that even though Sam's only had 5 seizures in his lifetime I would most certainly recognise it if it happened again. Then over Christmas Sam had that lovely little virus visiting his tummy and I awoke one night to him having a very short, but definite, convulsion. The first two convulsions he ever had were febrile convulsions caused by the onset of a nasty tummy bug, almost three years ago to that day. I kept a close eye on Sam for the next few days and decided to go read up on Myoclonic Seizures after all, just in case, only to discover that they are in fact not "seizures" as such, as I  had presumed, but rather a series of spontaneous jerking, etc. An extra bonus was that there are a few video's on Youtube actually showing what it looks like and it pretty much looks exactly like what Sam's little body is doing through the night, which would sort of explain why peaceful sleep escapes him. 

 

So, again, really disappointed that Wednesday's appointment didn't take place :(

 

Finally, Wednesday evening saw us enjoying at least a little sleep. Not a full night's, but there was more sleep than wakefulness...which becomes quite good enough. Thursday morning was Sam's first group outing -  to the Fire Department! Really exciting, particularly for me, as Sam loves doing the "fire engine" sign. Thankfully we avoided vomit for at least the first half hour, although Sam preferred observing the fire engine and the other children from a distance. When the firemen turned the water on, that distance entailed Sam and I having to leave the actual fire station and watching from outside the front of the fire station, through the great big doors. There might have been vomit, but it was just a little...not even enough for me to have to reach for my DNY but easily cleaned up with a wet wipe. That little bit of vomit though was quite a blessing as when rushing to the car to retrieve the wet wipe, I discovered I had left my car door open the entire time. GASP! These kind of little..um...oversights are becoming a bit too frequent. There has been the occasional bottle or phone left on the roof of the car and en route to the Fire Station on Friday I suddenly found myself at the local high school, not too far off my intended destination (barely a kilometre or five) but still just a tad worrying. Surviving on 1-2 hours sleep a night, I would have imagined far more perilous consequences so we're still good for now. And boy is that a good thing, because last night we did another whopping amount of bodybashing from, again, round 10pm till just before 5am. Thankfully Sam fell asleep then for just over three hours, giving us just enough time to make it to physio which lasted all of 20 minutes as Heidi was unable to work with the fearful and fight-or-flighting little dude :(

 



Where Sam is at his most happiest lately...at home, close to the floor, on a soft surface...with an adorable little boy for company

Sam and his "bike" providing us huge amounts of amusement because try what you might, he refuses to sit straight on the seat. As soon as you correct his position, he shifts that little bottom to the left and refuses to ride any other way.

Change

Sam turns five this year. Yikes!
Meghan turns thirteen. Double Yikes!
Mom turns.....mmm, let's just not go there!  #fortyphobia

Since pretty much the beginning of Sam's sensory/anxiety issues I have found myself wanting to homeschool Sam. I take great delight in sharing that before the age of three Sam knew all his numbers 1-20, many shapes, letters a-f and more recently can recognise almost 30 different WORDS from his list of signs.  And these words have no pictures or icons, it is simply a list of 200 words from which he can select several simply by scrolling down the list. And it's not the easy words...it's words like caterpillar, swing, sleep, daddy, mommy, grampa! I love how much Sam absorbed whatever I was "teaching" him and how he thrives on a one-on-one setup.

Towards the end of last year I started having second thoughts. Watching Meg enjoy the excitement of the various yearend activities like concerts and grade results, etc. made me a little bit emotional about Sam not ever experiencing those same things.  Suddenly all thoughts of homeschooling had me envisioning a solitary smurf, humped over his i-Pad, robbed of social interaction and, seemingly, life. Accompanied by an equally solitary, hermit-like,  humped-over mother (hers age-related LOL). I thought about the extra, included therapies Sam would benefit from by attending a school for differently-abled children as well as the possibility of me returning to work to try and keep our heads above water financially. 

Also, and perhaps having had the most impact, I recalled someone making a comment on some or other medium implying that homeschooling was effectively saying that you do not believe your child has the potential to thrive.

Yip. Definitely what had me ever-so-slightly mortified.  Simply because I know Sam truly does have potential, huge unimaginable hoards of potential.  And it would be devastating to have him or anyone else believe otherwise. 

And then the holidays happened. Along with a level of anxiety and distress we have never seen before...and we've seen plenty of both. Apart from the change in routine that goes with no school or work (which I've mentioned before) there were other minor things just as baffling. Samuel stopped pulling himself up on the tv unit, which he used to do all the time especially when watching his favourite dvd's. He became impossible to transition from, say, the couch to the floor. He would just turn around and cling to whatever he could grab in absolute fear. Having him so fearful in his own home is saddening.

Remember the story about the time I hung curtains in our bedroom? Try this one on...

As our lounge is a little quaint, putting the Christmas tree up required the moving of some furniture. And by "some" I mean shifting one sofa a total of about 1.5 metres at a 90deg angle. When Grampa returned from a two week visit with his sister and noticed the change in Sam, he asked if it couldn't perhaps be the shifting of the sofa that was unsettling Sam so much. I said "Nah!"

Yesterday morning I moved the lounge back to it's original arrangement. Instant improvement in Sam's behaviour. The fear is not completely gone, but it is better.

The lil smurfy dude just doesn't do well with change. He doesn't do well with unfamiliar. I tried to introduce Sam into the Sunday School class last weekend.  With the classes not having begun yet, the class was very casual with the other kiddies just playing ball or building blocks...nothing particularly exciting. Of course I planned to stay with Sam all the time. Instantly he started gagging. I tried to distract him, which worked for a little while. More gagging. Twice I left the room to try calm him. But eventually it got too much for him and he started vomiting again.

So here's the thing...Sam in a mainstream school will.not.work. It is not a cop out. It is not a surrendering of his potential. It is not an over-emotional grumbling. It is what it is. REALITY. Putting Sam in a mainstream school now would not be for Sam's benefit. It would be for ours...for the sake of our pockets and for the sake of the "normal" expectations instilled in us for our children, for the sake of fitting in, for the sake of a hundred other things except for the sake of our uniquely designed Sam.

Now, the only doubts I have about homeschooling are really about myself. Having no teaching experience, will I be able to adequately educate Sam? I am blessed to have a good friend who is currently homeschooling both her sons and has introduced me to a homeschooling group. Her reassurances that homeschooling by no means deprives a child of social interaction have been validated almost immediately by an arranged group art class tomorrow morning at 10:30 which Sam and I will be attending (hopefully minus v-wording) and an outing for next Thursday to the Fire Department which couldn't come at a better time as Sam has suddenly developed a keen interest in fire engines.  I have every intention of persevering with the Sunday school class as well and can only pray that Sam eventually starts to feel comfortable there. Taking that Meghan took a total of two years and nine months before she enjoyed her first tear-free day in primary school, I am hoping that by the time Sam is 7 we might have a successfully attended Sunday school class!!!

I am excited about our homeschooling journey. I am excited about finding new and creative ways to teach Sam, knowing that I am playing an active role in helping him be all that he can be. I know in my heart it's the right decision for Sam :) What was that I mumbled recently about how changing the path you take doesn't necessarily mean changing the goal xxx

Progress is a nice word, but change is its motivator.
And change has it's enemies.
(Robert Kennedy)

The Lighter side of Sensory Processing Disorder

Sam's newly acquired aversion to the sound of running water and, more importantly, the sound of running water hitting any kind of surface has become quite entertaining.  Last Sunday Sam had another vomit session at Church (Yes, really #sigh). The first thing we did once he stopped puking was walk him over to the outside tap to try and wash off his hands, hoping to make transporting Pukey Smurf a little less challenging. Well the poor kid jumped a metre high when the water hit the paving outside, almost starting the puking all over again.

 

This interesting new twist has kind of put a damper on my wanting to try Sam with some potty training this Summer.  I thought the least "pressured" step we could take would be to let Sam have a wee in the garden.  Well two major problems with that one a) he won't stand on the grass and b) that would entail him having to tolerate the sound of his wee hitting the grass.  It just ain't gonna happen folks. Quite amusing is the fact that he has taken a liking to having a whizz on the bathmat at night while I am undressing him and the sound of the little pool forming on the mat does not seem to bother him just one bit.  So the only thing I could think of was a fur-lined potty. JUST KIDDING! Well kinda, if I thought it would work I'd certainly try it.  Just for laughs though I googled fur-lined potties and actually found one! Unfortunately the fur would have to be at the bottom as that plastic bottom would definitely make for some serious startling. Nevermind the laundering challenges that would pose, although having to wash the bathmat on a daily basis is not much fun either.  

 

Luckily most of the moms on the Sensory Processing Disorder site have shared that trying to get SPD kiddo's onto a potty is almost impossible so we are being spared the epic fail that would come from fur-lined potties.

 

More seriously though, this SPD thing has us beat at the moment.  First there was RTS and having to adapt to a set of specific challenges.  Then 19mnths later, having just started feeling like we were sort of keeping head above water in the RTS ocean, along came SPD.  There, but pretty much in the background with the exception of some conquerable little quirks like keeping Sam away from sunlight (which caused him to scream as if in pain), making sure his milk was always the exact same temperature, etc etc while we still grappled with the more serious RTS issues like a tethered spinal cord, undescended testes, etc.  Then after that first testicle repair all of a sudden SPD was right up front giving RTS a remarkable run as most puzzling condition.  And now? Now Sam's sensory issues are by far more perplexing than his RTS issues. Why would the SPD issues be troubling us more than the RTS issues? Because, to a certain extent, we are at least prepared even if on a shortterm basis, for what to expect...what to look out for with RTS. But oh my gosh, no such thing with the SPD.  Sam's "symptoms/triggers" are changing almost on a daily basis. It's like having a different "condition" to master every morning, a different little person to nurture and securely guide through each day...every morning. It's pretty darn exhausting I tell you.

 

All of a sudden we are doing loads of gagging and then inevitably, throwing up again. Last Sunday we attempted to sit with Sam in the baby room during the Church service as it was empty.  Sam has not been in there for a while, maybe two months at the most, but there was a stage where that's where we sat with him every Sunday. Everything was going okay until I decided to move from the chair onto the floor with him, again what we would usually do most Sundays. And for some reason transitioning onto the floor has now become a major gagging trigger, even here at home since then. 

The v-wording thing is really hard for sure but Church being a gag/defensiveness trigger? Without a doubt one aspect I could least come to terms with. 

 

And as baffling as Sam revisiting his extreme fear of being moved around (we did this almost exactly two years ago when I struggled to get him into and out of his carseat, etc) is this....

 



 

For the first time in twenty-eight months he is quite comfortable with moving from his knee-walking position into sitting on the floor again..all on his own.  Not only that but about a week ago Sam started standing up, completely unsupported, on the bed.  I've tried desperately to take a pic but I am so scared of losing sight of him and having him somersault off the bed that I haven't quite captured a clear shot yet.  He can only manage about 10-15 seconds but each and every day his balance improves and he can more easily right himself when it looks like he might topple over. 

 

So...to sum it up, having mom or dad lift him from the couch to the floor is an absolute gag-worthy No No! As is running water and the bathrooms and baby room at Church.  But suddenly sitting all alone is like so blasé as is standing up for the first time EVER!  Baffled? Yip, me too!

 

Sometimes I wish with all my heart I could simply ask Sam what troubles him and what I can do to make it better.

 

But I can't.

 

I don't speak Smurf :(

 



One of Sam's Christmas pressies :

 

I don't know how possible it is, but I do wonder if this really inexpensive gift has not contributed to Sam becoming so much more confident with the sitting and standing. Sam does ride the little pushbike quite well, way better than I expected, so perhaps it's possible? Regardless, it is beyond joyful for this Mom to see her little boy cruising around on his bike...just so normal.



 

 

We've made it through a very low-key Christmas and even more low-key New Ýear's Celebration, filled mostly with time at home watching movies, splashing around in the pool. In fact, I was so concerned that the rather hectic change in Sam's routine was causing some of the newer gag-triggers that Sam and I did not leave the house for almost seven days, apart from quick trips down to the Spar and the like.  Well that and the fear of having to add a few more destinations to Sam's list of places he has vomited!!!

 

WISHING YOU ALL A TRULY BLESSED 2014.

MAY IT BE AWESOME XXX

Sleep Wars & V-wording

 

Different for sure is our little smurfy dude.  Still totally thrown by having his little world rudely interrupted by all things Christmas. Up until Friday evening we were surviving on very little sleep, most of the night spent with distressing (mostly for me) bodybashing and a seemingly aggressive itch (without any visible rash to justify it) which bothered Sam for hours, resulting in him scratching his skin open in some places.  By Friday, desperate for sleep, we went off to the pharmacy hoping to fill a longstanding script we have for Aterax, which we first used for Sam when his sleeping problems began but quickly found that, while effective the first three or four nights (as with many meds Sam has taken) the fifth night usually ends in a major fail when the med has the adverse effect and Aterax was for sure one of the most true to this pattern. The pharmacist advised that Aterax has been unavailable for some time but, with it being for shortterm use, suggested some Allergex syrup (Chlorpheniramine). Well Friday night Sam managed eight wonderful hours of sleep, Saturday night nine hours and last night an awesome eleven hours and 50-odd minutes!!! Despite my better judgement, we've gone ahead and tried one more night but regardless, just having three nights of decent sleep has us feeling almost human again. 

 

Sam's current anxiety/sensory mix is still Faverin in the morning and Clonidine in the evening.  Even though the Clonidine doesn't really help hugely with the sleeping issues, the combination of the two definitely makes for a calmer Sam during the day. That is, when we've not upped his social exposure and aren't having a much-needed braai (BBQ) with friends one night, off Christmas lightseeing the next evening and traipsing around the night market the very next. Perhaps three consecutive nights was a bit much for Recluse Smurf and left him pretty much like so today...

 

And with heightened sensory issues comes heightened v-wording incidents. And we're saying "v-wording"because defensive gagging followed by various degrees of v-wording is once again a regular occurence during our day...sometimes caused by my rather slow transition back into being alert for triggers. Yesterday morning I took Sam into the Ladies restroom at Church and within a second realised that I usually only take him into the Disabled bathroom with which he is now familiar. Any unfamiliar environment remotely "clinical" has always been puke-worthy, even before the holidays, so only twenty minutes into the service we were leaving with a stripped little smurf and an armful of eau de puke clothes. #sigh 

 

Having our last PT session for the year last Friday, Heidi and I discussed Sam's rather dysfunctional balance and possible ways to help him adopt at least a vague sense of being able to keep his little body upright. For instance, Sam cannot keep his body upright when going down a slide...he instantly falls backwards. Even in the swimming pool, he just sort of topples over. Sam's been doing really well on working with the PT ball again which is pretty awesome and I chatted to Heidi about possibly trying him on one of those little push motorbikes, particularly because he seems quite fascinated with motorbikes and fire engines at the moment.  Fire engines are definitely his favourite, always accompanied by the most adorable signing of fire engine but while I would love to buy him a fire engine of his very own that he can ride on/in, we've gone with the toy motorbike. I think it'll be one of the first gifts he'll be really excited about...which of course makes mom excited too :)



Words and Steps

Having just finished supper one evening last week, chinwagging about this and that, Brampies wondered out loud what Sam would be like if he did not have RTS or SPD.

 

I said that I think he would be very intelligent, quite cheeky, have an excellent sense of humour, be rather mischievous, extremely demanding and strong-willed but loving and affectionate too, you know, kinda like he is now....just with words and steps :)

 

At the moment though, words and steps are not flowing in abundance. It's been more than 6 weeks since that solitary word and not a single one more. Sam had quite a major fall with his walker, which I thought would put that one to rest for a while too but, both strangely and thankfully enough, he was quite happy to use the walker again the very next day. Sam was doing quite well with walking while holding one of our hands and then seemed to become quite fearful again. We still try at least once a day to give it a go...sometimes it works, sometimes it doesn't. This evening I was in the bathroom, getting Sam's bath ready and out of the corner of my eye I saw a little person...just a single, little person...walking round the corner. Honestly, my heart simply stopped...I couldn't move, couldn't blink...for a millisecond, until I realised that the single, little person's hand was actually attached to his, only then visible, Dad's hand. Disappointed much.

 

We are two weeks into our six week school holidays here, with the 2013 school year having ended on the 4th December.  There have been plenty of award ceremonies, concerts, recitals and all the other year-end happenings...most of which Sam did not tolerate all that well.  He lasted all of about two minutes into Meg's ballet recital before Dad had to head home with him, screaming and pulling hair like...uuhhmm, a kid with SPD actuallly. At least I got to stay till the end #Yay 



 

A recent addition to Sam's list of "hostile"sounds is water. The sound of the waves at the beach now freak him out, the sound of a sprinkler going, the water hitting the ground when Brampies or Dad waters the lawn. No less alarming, was the sound of the garden house filling our little pool for Summer.  So much so that Sam had a mini-anxiety attack every time we needed to walk past the pool (now full) over the next few days. Until we managed to coax him in of course. Then every time he saw the pool he asked, with his most charming sign language, to swim. Even on the way to OT one not-so-sunny morning at 9am.  And of course the moment he spots Meghan taking a dip, he requests so desperately to join her that there often isn't even time to grab his swimming trunks. Meg, being the awesome big sister that she is, has been very accommodating so far...

 

 

 And then there's this...

 

The little smurfy dude has taken to watching his Mr Tumble dvd's like this. Any time spent off his knees is welcomed, nevermind how darn cute he looks. He hasn't quite tried to "sail" along the furniture yet, but just having him feel comfortable enough to stand up again is quite huge. Baby steps, right? 

Change the plan but never the goal



Cannot believe it's the last day of November. And I've only blogged once this whole month, so had to attempt at least one more post, albeit short.  This time of the year is notoriusly "crazy" as the school year comes to an end and brings with it all kinds of activities like concerts and prizegivings, etc amongst having to study and write exams, Meghan that is.  We've only three school days left for 2013 and I can safely say that the entire household, Sam included, is looking forward to a little "chill" time.  

 

Sam's behaviour is all over the place...we have surprisingly harmonius days, like Friday, when the little dude was the most charming smurf around.  All smiles and co-operation during his physio session and sweet and friendly during a shopping trip immediately after physio, which is normally taboo with a capital YIKES! Followed by a day of up-and-downing in the car getting Meg to her different commitments.  Today he has been completely unruly, throwing anything and everything he can get his hands on, causing mutiny during Meg's ballet prizegiving and just generally being grouchy.  I am hoping that once our routine settles down again we'll see a little balance restored.  Even when life is a little more peaceful Sam tends to act up on weekends when, inevitably, his daily routine is disrupted. 

 

We have had quite significant improvement with Sam's walking.  I ditched the towelling wedgey I'd fashioned on Sam's walker as, although it was providing the security he needed when using the walker, it definitely made his walking a little awkward.  So, with Plan A proving unsuccessful, I fashioned Plan B...an old, stretchy belt attached to the walker which provides just enough security around Sam's trunk without hindering his movement. And, even more exciting, is that Sam has started pulling himself up on things again.

 

 

Success! Now Sam's more than happy to spend more time in his walker  #phew   

Heck yeah!

 

 

With Sam's testing all kinds of boundaries over the last few weeks I decided it was time to bring in some serious reinforcement when disciplining him and introduced a naughty chair. His first few sits were really quite traumatic for Sam, with his having sensory challenges with transitioning to and from a sitting position, but by the second day his being placed on the naughty chair was an opportunity for him to discover just how quickly he could "cute" himself out of punishment.   

 

 

On Thursday Sam had his very first haircut at an actual hairdresser.  The hair salon I had made the appointment with is super cute, decorated in true kiddies style with individual tv's and dvd players at each cutting station.  As soon as we walked in though Sam started gagging purely from having to encounter a completely unfamiliar environment. Of course getting him to sit on the chair was not an option but the stylist cutting his hair was refreshingly patient with him and pulled up a seat we could both sit on, which is where she eventually succeeded in taking a few worthwhile snips. 

 

The result (try as I might, I could not get this pic to rotate )... 

 

 

 

There's been not a single other "Mamma" uttered at all :(  But we persevere with getting Sam to repeat our very many requests to do so....or any other words for that matter.  But oh my gosh, the kid's signing vocabulary grows by the day as he astounds us often with signs he has learnt himself from watching Mr Tumble or his iPad.  His developed a bit of a defensiveness to water again, which is quite disappointing as Sam's evening bathtime has always been one of our favourite daily activities. Now, within minutes, he's throwing his bath toys on the floor and splashing around in frustration like a looney. I'm hoping this too will settle down soon, as I would often hang over the side of the tub, my face bare inches away from Sam's, and prompt some of our most intense speech therapy sessions.

 

So, with Christmas being just 25 days away, I guess it's time Smurfville considers putting up some Christmas decorations and an actual tree. I have to admit I am ever so slightly apprehensive about the entertainment value said tree and decorations are going to provide for Sam...watch this space!

 

Remember remember the 5th of November,

A day which brought joy equal to no other!

Sam has a book. Scrap that. Sam and I have a book, well several of them by now. He has this really interesting need for me to draw things relevant to whatever we might be doing/watching.  For instance, if we're watching Mr Tumble I will have to draw the spotty bag, Mr Tumble's house and occasionally even Mr Tumble himself.  If we're counting, I'll have to draw numbers. If we're sitting at the kitchen counter I'll have to draw the things he can see...the chairs, kettle, etc.  To be fair, most of the drawings are fairly hideous due to the rather challenging pace at which they need to be drawn, but certainly do reflect Sam's obviously vivid imagination as often I see absolutely no resemblance to the object of focus in my drawing, yet Sam will gesture excitedly in confirmation. 

Recently Sam has taken a liking to the biggest, most amateurish (and, needless to say, most embarrasing) of these books accompanying us out in public and I dare not leave home without it.  Driving while he pages through the book for the millionth time can be quite challenging as he expects me to acknowledge each page when he taps it enthusiastically.  On Tuesday on the way to fetch Meg from school was such a moment and while I try to (sometimes) fake a quick glance and guess what he might be looking at, in an attempt not to pancakerise the newly hatched goslings wandering around the local pond, I failed to even fake-glance.  After hearing him tap the page exaggeratedly, a small smurfy voice suddenly beckoned. "Mamma"

Any overshow of excitement with Sam usually ends in him crying so it took every ounce of self-control I could muster (and trust me, I am far from abundant in self-control with these things) to calmly stop the car, turn around and say "Clever Sam", acknowledge the drawing of Tinky Winky's bag he'd been trying to show me and then continue driving on to the school focusing through tear-filled eyes.  Once we got to Meg's school I straight away tried to get Sam to repeat it, but all he could manage was his usual "Vavava", with which he seemed just as pleased...
 

  

We've yet to hear another "Mamma" but believe me when I share that I attempt, several hundred times each day, to help Sam's brain find the path back to that wonderful place.

 

Sometimes the depth of Sam's sensory dysfunction completely blows my mind.  It took almost a whole year before Sam mustered up the courage to crawl down the really very short passage in this house, into our bedroom where he would sit in front of the mirror playing his drums or doing silent renditions of Heads, Shoulders, Knees and Toes (given away only by his actions), but suddenly about three weeks ago he became too fearful of entering our room again. The other day I decided to remove the curtains we'd hung over the blinds as they seemed to make the room too dark.  Within minutes Sam crawled into the room to admire himself in the mirror.  I did a quick calculation and realised he'd stopped coming into the room when we'd hung the curtains. No wonder moving house knocked the kid sideways...and a little to the rear too :)

 

Ah, sleeping wars...an ongoing battle indeed.  There was no substantial negative on nights four and five of the Clonodine, just that it doesn't work every night. Wednesday was a good night, Sam fell asleep within 20 minutes and only started bodybashing round 5am. Last night took the all too familiar two hours of bodybashing and a violent nosebleed before he eventually fell asleep, only to start thrashing again round 2am.  Makes me wonder if the Clonodine is contributing at all. Sam's system seems to have the most warped habit of doing well on a new med for the first four/five days and then somehow Smurfanity prevails and blows the new med out the water...or blood. So we've done Epsom Salt baths, Rescue Remedy, Valerian Root drops, Melatonin, Neurontin and now Clonidine. Honestly, could there be anything else to try? Perhaps I need to try all of these things together? On me!! Heck, there's a thought...with any luck I wouldn't even be aware of any smurfy bashing going on.  Hehe! Just kidding.

 

Rolled himself to sleep in a pillow pancake ;)

 

We're still trying to limit Sam's kneewalking but it becomes more and more difficult with each day as he grows increasingly frustrated, not only at having his mobility and independence curbed but also because most of his self-stimming is done on his knees. After Tuesday's little moment, I wondered to myself which of the two would be the most beneficial to Sam, if we could somehow guarantee that he would at least master one of the two, walking or speech...I think we'd definitely opt for speech, but still remain hopeful for both xxx