TEETH, FEET AND A FIRST EVER SCHOOL CONCERT GONE SMURF-SHAPED

Woo Hoo! A blog post! This is like, what...my sixth one for the year! Really quite pitiful, if I do say so myself, especially as there are so very many things going on in the Lil Flappy Dude's life that I could probably easily blog every day. 

Where should we start....let's start with some of the not-so-fabulous stuff and, as always, end off with the good stuff. 

Teeth! Teeth? Yes, really...teeth. Of all the issues we'd prepared to deal with when Sam was diagnosed with Rubinstein-Taybi Syndrome I not once expected TEETH to be such an issue.  What the doc should have said when giving us the low-down on RTS was "Child will have walking issues, feeding issues, breathing issues, sensory issues, spinal cord issues, testicle issues, speech issues, orthopaedic issues, digestive issues BUT out of ALL OF THOSE issues....the one which will challenge you the most is TEETH!!" Okay, I'm being a little melodramatic...which is completely out of character...but still.  So we were nearing the end of the three months we had to wait to see what that little talon cusp was going to do and were thankful that the area around the talon cusp had seemed to settle (after lots of infection and inflammation) when a couple of weeks ago Sam started refusing to eat and drink again.  I thought it was just another round of irritation so had a look inside Sam's mouth and was not too happy to see another talon cusp coming through.  Another three-month wait here we come.  With (I think) most of the Rubinstein-Taybi kiddos having developed talon cusps, the issue itself is not anywhere close to being considered medically "serious" or anything like that, but it's all the spin-offs from this "small" issue which are really quite frustrating. 

As always, Sam's first line of defence is to throw some hectic oral sensory aversion at me and refuse to eat or drink...a little annoying but, oh, we've done our time with this stunt and it eventually comes right.  The more worrying problem is that he steps his teeth-grinding up a level or ten.  We've already had to cut the remains of one ground-down tooth out of his gum which caused the subsequent adult tooth to come out sort of in the front of the gum as opposed to out the bottom of the gum because it could not break through the area which had been stitched closed after the procedure.  Now, with there being more irritation in his mouth, Sam has managed to completely grind down yet another tooth into the gum and has another two, mere days away from going the same way.  I get that Sam's REALLY into doing things a little different (because after all DIFFERENT IS COOL!) and I'm really into embracing all that funky difference. But every now and again maybe doing one or two things in the normal way...like just having your teeth come through the right spot in the gum...would be quite fab. 

Funny story though...when we were done with our most recent sensory-instigated fast, the lil dude decided that he was done with pureed foods. Yay!! Of course, we've been here before, but this time it really is looking promising.  We last had pureed food a little more than a week ago ("we"?...because I make a habit of eating pureed food?) and have done really great with sliced beef and chicken, just the minced meat remains a very expressive no-no.  So the meat might have been cut up really small. Like REALLY small...like to about what I'd imagine an ant's portion would be. But still, progress is progress so it most definitely counts.  Only time will tell how long we will be doing ant portions of food though because Sam's sensory issues and digestive issues are not usually keen on parallel progress...but here's hoping!

Random funny story...Sam watches a bit of tv in the morning when he wakes up so that I can try get all the morning tasks seen to.  If Sam has not woken up by a certain time, I usually put a movie on (always Teletubbies Bedtime where Alex sings "Wake up sleepy head"...pretty cute hey?) quite loudly, but on the odd occasion that Sam wakes up before that, he sticks his hands out from under the blanket and before even opening his eyes will sign whichever movie he wants to watch...and it's never Teletubbies Bedtime. You sort of have to see it to appreciate it, but basically he'll be lying dead still (which generally only happens from about 5am onwards) and all of a sudden two little hands will frantically pop up and sign the desired dvd in an exaggerated and very cheeky way...which is so odd, because our lil flappy dude is NEVER cheeky (*exaggerated eyeroll).

Seeing as we're currently into all things -free (puree-free...sleep-free) we decided to have another shot at nappy-free...or as close to that as we can get.  WARNING : POTTY-TALK TO FOLLOW! Previous attempts have been a bit tricky.  While you can get Sam to pee on demand, he doesn't quite seem to grasp the concept of telling you when he has the need to go (there had been a degree of damage to his bladder prior to the spinal cord surgery but there was almost a remarkable improvement after the surgery which in my layman's mind would say that Sam should recognise the "urge" to pee, but specialists' opinions seem unclear).  This might not seem terribly problematic but when attempting to potty train the last time, we found ourselves in a situation where Sam would only urinate when I took him to the toilet, he just refused to pee in a nappy.  The challenge with this is that he freaks out when sitting on the toilet, so he needs to stand...which would ordinarily not be an issue...except that the lil dude obviously cannot stand unassisted.  So I land up supporting him, which leaves those little funky hands free to roam the toilet. Eeeeek! At home this is thankfully a little less of an Eeeeek! but this method of peeing means that Sam using a public toilet is not an option.  The tricky part comes in when you're doing a four-hour trip to Stilbaai and the dude won't pee in his nappy and cannot use a public toilet. You see? Tricky indeed.  Luckily I spotted this nifty little item on Facebook recently...

...and we're giving it a go...and a rather successful go at that.  We've gone days where Sam has only used one nappy the entire day and he seems to have gotten over the idea that he cannot alternate between nappy and toilet (even though it was actually pretty awesome that that was his mindset).  The only minor obstacle here is that I haven't quite yet figured out how I'm going to go about sticking little green, froggy urinals in every public bathroom we might ever need to visit in the greater Cape Town area.  It's a little all over the place for now but it's a start (again)...an awfully tricky start...but a start nevertheless.

And we're almost on to the really good stuff (nay...awesome stuff).  Last bit of trickiness comes in with those funky little feet.  After acquiring some rather entertaining physical issues (a hip which keeps clicking out...a knobbly-thingy protruding from my neck...and and) I thought it might be best to stop carrying our 25kg's of smurfiness around.  Understandably the lil dude was not too excited about having to abandon his go-to mode of transport, being mom's hip, but now seems quite keen to walk into school (assisted of course) in the mornings...unless we are late (which, ahem, almost NEVER happens) then hip it remains.  So, lil dude is keen to 'walk' and mom is keen to have something vaguely resembling an aligned body back at some stage - it all sounds pretty peachy.  Which it is.  Except for these uniquely-designed little feet :

While it's pretty awesome to see how steadily more confident Sam is becoming on his feet, it's a little worrying that these little feet seem to get more funky by the day.  Sam is not very keen on walking with his AFO's on, but walking without them seems to be worsening both the Hallux Varus in the left foot and the over-pronation in the right foot. So, the problem - Sam needs to walk.  Sam does not want to walk with AFO's. Sam's feet are thus becoming more funky.  The solution? I am clueless. For now. 

And on that terribly constructive note...here's the AWESOME!

My precious little, triple-diagnosed, previously deemed "ineducable" and only worthy of "a place to put him so I could go on with my life" flappy dude took part in his FIRST EVER school concert.  This mama's heart near exploded with pride and awe as I watched him...what an incredible kid! What an incredible inspiration! What an incredible school for being able to recognise the potential which lay hidden in the non-verbal, sensory-dominated labyrinth in which Sam waited to be discovered.  Thankfully though, before I could embarrass myself by turning into a blobbering mushy mess, my not-so-little-anymore very flappy and terribly cheeky dude decided to throw a Sam-spin on things...see for yourself xxx

Are We There Yet?

Where?

 

Okay....are we okay yet?

 

The first five years are the most challenging...after that, everything seems to settle and you'll be okay...one of the most regularly-shared reassurances we were offered during those first years.  Gosh...Year 5 became my desperately sought-after utopia, if only we could make it to that benchmark, then we'd be OKAY!

 

Except...we didn't get okay! Instead we got Belgium and Belgium was pretty sucky as it came in the form of an additional diagnosis, Cerebral Palsy. That is just so not how it was supposed to go.  Initial diagnosis at birth - Rubinstein-Taybi Syndrome. Great, got it...no speaking, feeding issues, ineducable...blah blah blah. Or so according to Sam's (then) paediatrician.  So, shatter all dreams for your littlie and try and just get through each day at a time...and literally at that stage because the little dude wasn't quite sure he wanted to do this whole ventilation-less breathing thing or leave his entertaining game of musical incubators in the NICU so for the first few weeks, each time entering the NICU was accompanied by crushing waves of nausea and fear about whether Sam had managed to make it through the night without slipping back to High Care.  But then we linked up with other parents of RTS kiddos...parents who were a more accurate and encouraging source of information and support than any medical journal and/or individual divulging said information...and we discovered okay, where children with RTS DID in fact thrive and learn and communicate (perhaps not verbally) and went to school and were so very educable.  So...kept the eyes focused on that five year mark and bulldozed ahead through therapies and surgeries and doctors' appointments and regressions and illness and and and...because at the end of all those draining challenges was our okay.  Except, literally days before our five year mark, our okay got ever-so-slightly crushed with the results of an MRI which explained why Sam was not yet quite achieving milestones other RTS peers had by his age. 

 

I think I kind of gave up on okay.  I certainly was not going to go setting new benchmarks because the tricky combination of Sam's diagnoses (Yeah, we got to officially throw Autism in there as well) meant we no longer had a clear guide as to what to expect when, with no similarly effected children to draw measure from.  So, benchmarks are just not our thing it seems.  I felt kind of lost.  Actually, I felt very lost.  There was no longer a plan with a somewhat defined goal.  We were goal-less.  Goal-less is not great I tell you, it can suck the motivation and spirit to keep going right out of you.  So we threw goals out the window and just went with whatever was working for Sam at that moment.  And, at that stage, it was one-on-one tutoring with as little social interaction or change of routine as possible.  And that worked really well, for a while. 

 

But by mid-way through last year things changed.  With no experience in teaching and/or educational guidance whatsoever, I ran out of stimulating things to challenge Sam with...and he became extremely bored with the work I was doing with him.  Aggravating the situation more was the disruption of our every day routine after I joined the Danniel and Friends Fund and while I was revelling in having something so exciting to throw myself into, Sam was doing just the opposite.  Still, there were no schools which I felt were adequately able to withdraw the immense potential lurking beneath the lil flappy dude's packaging and so homeschooling it stayed. 

 

And then 2016 happened :

Where Sam finally overcame his fear of sitting on unfamiliar objects

and ventured onto a (for all intents and purposes) "Mickey Mouse"

one Sunday morning...granted after much coaxing from Dad.

And the newfound courage to try new things lingered a little longer.

 

And we added a member to our family - Chipolata aka "Chippy"

who first caused incredible disruption in our home as Sam battled

with the idea of having his place of comfort so vigorously invaded

by this not-so-welcome addition.  But before long, the two had bonded

and now every day upon arriving home from school, Sam first spends

a few mins with Chippy (who, if he was human, would most definitely

be just as flappy a dude as Sam) offering his hand to Chippy for some

crazy-affectionate licking and nibbling.  

 

Um...did you spot it...THAT word...school!

 

At the beginning of the year Sam and I started attending one-on-tutoring sessions at a newly opened school closeby, Edu-Play.  The sessions went extremely well. Sam completely soaked up what was being shared with him as the activities were being tailored specifically to Sam's style of learning and the patient, accepting and genuinely caring atmosphere of the facility made Sam feel comfortable and safe.  At the end of the second term, Sam's tutor, Carlyn, suggested finding a carer/facilitator for Sam and enrolling Sam in fulltime classes.  Neither my mind nor my heart could work my way around the idea.  I'd given up on the idea that Sam would ever do something as "normal" as go to school, especially here in South Africa where not only are schools for differently-abled children limited, but schools which can cater for as unique a combination of diagnoses as Sam's are very nearly non-existent. Even as I started the process of trying to find the right carer for Sam, I don't think I ever really considered it becoming a reality.  And it almost didn't.  Finding a carer for Sam proved more tricky than I'd anticipated and it was literally two school days before Sam was meant to start that Leeanne happened upon our little flappy dude. 

 

So, on the 18th July 2016 I drove Sam and Leeanne to school for the very first time.  To be able to indulge in an activity so normal and taken for granted by so many others, is without words.  Sam's unexpectedly comfortable transition into his new routine still has me a little surprised, but reassured that he is happy.  As Sam nears the end of his seventh week in school, the novelty of each trip to and from school remains.  Over the passed couple of weeks Sam has been trying desperately to communicate more, becoming extremely frustrated when I am not able to fathom the signs he has resigned to making up himself when I do not grasp what he is trying to say.  It is a frustrating process, but also an encouraging one which I am sure can be built on to try and shape a way forward for some form of effective communication medium for Sam.  Being the only child in the school who is not able to walk, Sam has also started taking one or two steps on his own, although he is still extremely fearful and cautious.  On several occasions now he has stood completely independently to be able to use both hands to sign to me.  There was a nasty fall that happened a few weeks ago with one such incident, but the anticipated regression which would usually come with such a fall was short-lived and seemingly quickly forgotten.  The extent of Sam's progress over the last month-and-a-half is something I would simply not have imagined and without a doubt I know that Sam is where he is supposed to be right now, tapping into yet-to-be-discovered potential.  It makes my mama heart burst with pride.  And as I read the daily reports about what Sam has done at school, look at pictures of his daily activities and still occasionally glance over Sam's very first Playball report, unpack his lunchbox and prep his schoolbag for the next day I sigh and dare for a moment to entertain the idea that I think we have finally made it to okay.  

 

 

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 

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



Tumblemania, Relocations....and poop

So at our paed appointment last Thursday we discovered that Sam's sole surviving little testicle has, in fact, checked out of Motel Scrotum and travelled up North :( Doc Paed does not seem all that concerned about it, hopefully it'll come back "home" on it's own...

 

Two things Doc Paed did seem concerned about were Sam's knees and Sam's rather very full-of-poop gut. Little pus-filled pimples have formed on Sam's knees from all of his knee-walking and with his completely refusing to use his walker lately, Sam is spending more and more time walking on his knees which causes the little pimples to break into little sores.  Doc Paed advised that the little open sores could become infected and the infection could then travel into Sam's joints. I tried sewing felt-filled patches onto his pants but a) the patches move too much as he crawls and flaps when self-stimming and b) it looks like its the actual friction between his skin and the fabric (regardless of how thick the fabric is) which is causing the problem.  So next solution...keeping Sam off his knees.  The first couple of days went relatively okay but Sam has become really frustrated at not being able to "walk"around as he's used to.  Also, for physiotherapy reasons and his forever tightening muscles and tendons, limiting his mobility is not the ideal solution.

 

So I decided to try modify Sam's walker, hoping that he would once again feel safe enough to spend some time in it...

 

 

 

...and it seems to have done the trick, to a degree. Despite Sam looking like he has one epic wedgey, the bit of cloth he can feel around him definitely makes him feel alot more secure and he's spent a fair amount of time in the walker over the past few days. Yesterday he and I even played a little walker soccer! From a physiotherapy point of view, providing Sam with a "crutch" is perhaps not the most suitable way of getting him to walk. But from a SPD point of view, sadly, as we get closer and closer to Sam's 5th birthday and with no really fabulous improvements with most of his anxieties and fears I think we're moving further and further away from Sam walking independantly one day.  So if having a little bit of security in his walker helps, so be it.  I'll give the fabric a rethink to find something more durable but without being uncomfortable. 

 

As for the poop - when Doc Paed examined Sam on Thursday, Sam instantly flinched when he touched Sam's tummy. An x-ray revealed that Sam's gut was absolutely filled to the...uuhhmm, brim (?)...with poop. So we've more than doubled his Movicol intake and used suppositories for two days, which is about as many as we'll get to use as that little butt instantly clinches shut now. Sam seemed to be doing quite well with more solid foods lately, but obviously his digestive system needs to catch up with his sensory self....so we're back to very pureed foods. 

 

A long while ago Doc Paed prescribed a med called Neurontin for Sam, to help with his increasingly-forceful body bashing at night. I was a little sceptical about the Neurontin as when googling it, I read that it was initially intended to treat epilipsy.  But as Sam's body bashing became more distressful and his left hip started "clicking" again, which it hasn't done for some time I decided to give the Neurontin a try. 

 

Oh my hat!

 

The kid didn't move....I didn't sleep! I lay awake making sure he was breathing, occasionally turning him so that his body didn't cramp. #eyeroll  But on the 3rd morning, Sam woke up with the mother of all moods and Morning 4 only got worse.  Mentioned this to Doc Paed who quickly came up with an alternative...Clonidine. 

 

Oh my hat!

 

While the Neurontin helped Sam stay asleep and free from body bashing throughout the night, it didn't help him fall asleep and this is when Sam does his most damaging body bashing. It has been taking Sam as long as two to two-and-a-half hours to fall asleep sometimes.  We started the Clonidine on Monday evening and Sam has fallen asleep within 20 minutes every night so far.  Night 4 is usually the defining night, so let's see what happens tonight. 

 

Random Smurfy News : About a month ago, a friend gave Sam three *Mr Tumble : Something Special* dvd's.  Have you seen these? I can't say I found Justin Fletcher particularly entertaining in Jollywobbles and Justin's House...perhaps because I am just a teeny bit over the age group of the targeted audience? But in these particular movies, Justin works together with some pretty adorable children with special needs to create a fun way of learning, using Makaton throughout the movies. Sam is besotted.  He watches absolutely nothing else...no Teletubbies, no Barney, no Tweenies...just Mr Tumble, for which he has formulated his own "sign' and has picked up many of the proper Makaton signs.  I'm almost a little disappointed that I hadn't started Sam with Makaton right from the beginning as he seems to be grasping these signs far more easily.

 

 

 



 Random Smurfy pic :