Learner Drivers

Don't worry - he didn't really fall at the end of the video :) Just came up a little close and then got a bit of a fright.  So Sam's taking a little longer to get used to the swivel wheels than what he did to the actual walker, which happened almost immediately.  He's still grasping the concept that, while holding on, the walker follows his hands...and being a rather busy little dude, his hands are all over the place. So holding on to the walker and his book, while gesturing about what he can see around him plus a little (gobby) talking and singing makes for a challenging exercise.  I made sure I had enough time yesterday morning to load the walker into the car to take along to our weekly physio session and it was awfully sweet watching Sam show off his newfound mobility to the ladies there. Heidi feels that the walker is perfect for Sam and was thrilled at his good posture while walking. She's even already started working on getting him into a standing position on his own, using the walker as support, so that he doesn't have to wait for someone to help him up. Not sure I'm terribly keen on this idea but I am pretty sure it'll take Sam some time to let go of his sensory anxieties and embrace such a massive step towards independence, so take your time little smurf.

We spent last weekend in Stilbaai and were thrilled to find the beach extremely quiet on Saturday morning, despite the lovely weather.  Sam, however, was not quite as thrilled though.  The sound of the waves seemed to frighten him which in turn added to his fear of the water and he was not loving the feeling of the sand on his skin.  So we had to take turns sitting under the umbrella with him.  Despite his distaste for the sea sand, Sam actually managed about five minutes of sitting unsupported on it which makes this whole sitting-aversion increasingly interesting...and baffling at that. So sitting on the hard, cold bath surface is in (without any water), as is (apparently) detestable sea sand and (only our) bed (still somewhat understandable). But sitting on the physio's spongey matt is out, as is the soft rug?  Am I the only one struggling to see the pattern here?

Snuggled safe in Dad's shoulder, protected from the wind and scary sound of the waves

Hands thrown up in a defensive startle reflex (from the sand) which quite often lands a pretty forceful blow to the face of the person holding Sam

Sammy and Oupa

Early Morning Grins

This moment was quite something...Sam not only taking a bottle from someone other than myself (and very occasionally Chris) but during a rather bumpy car ride.

Sam was playing with his empty Kiddy-Calm bucket in the bath last night, kept studying the letters on it (we have "school" every day at home which includes numbers, shapes, colours, signing, letters, etc) and then signing "Daddy".  After a while I'd realised that he'd recognised the "..ddy" from the word "daddy". It's so exciting that he's starting to associate and apply the things we learn at home, in every day "outside" environments for eg, he recognises the numbers used to mark tills and aisles in the shops, he recognises letters in shopfront adverts, etc. Me thinks that Sam might not be quite as ineducable as I was told he would be when receiving his diagnosis.  What thinks you?

Walking, horses and toe-padding

So....



 

 

Sam has his walker *does really goofy-looking smurfy-dance *  (Mom, not Sam) Whoop Whoop!

 

And he is loving it. So much so that I took this awesome LITTLE video of him taking a stroll down the road with it. But after the video still not having uploaded after almost an hour, I had to conclude that the darn thing was not THAT little after all. Eish. Will try again. Sorry Lynn ;)

 

At least we have a pic.  We have adjusted the height of the walker somewhat which makes for a much more comfortable gait and way more confidence. At the moment, the wheels can only go straight, which we thought might be a good idea at first so as to avoid Sam having some rather damaging (to both himself and the household contents) bumper car episodes. But alas, the little dude is becoming very frustrated at not being able to go exactly where he wants to and so tries to lift the walker and shift it himself, which works okay some of the time but more often than not results in him overbalancing.  The great thing about the walker is that it has these little reverse brakes on the wheels so the wheels actually cannot roll backwards at all which means when Sam does lose his balance he simply grabs onto the walker and steadies himself quite well.  I was considering taking the walker with to our physio session this morning, just to show Heidi and have her confirm that the height and everything else was as it should be. However, we ran out of time (largely due to Sam's new morning ritual - more about that later) so I decided having to first negotiate fitting the walker into the car would just make us even more late. From next week though I will make sure we have enough time to pack the walker in as when walking with the physio's trolley, Sam lost his balance, immediately grabbed the trolley to regain it and instead landed up toppling backwards as well as pulling the trolley over his little feet in the process. 

 

Overall, having the walker is such a blessing. It is going to be so beneficial to Sam.  I really can't believe I had developed such a mental aversion to it. And it's an extra blessing that, Sam being Sam, he has become so comfortable with it so quickly, as opposed to shoving it into one of his sensory no-no's along with sitting, holding his own bottle, lying on the floor, hairdryers, vacuums, balloons, etc. . I will most definitely take another video ASAP...just perhaps a little shorter...and post it :)

 

Sam and Meg had another riding session on Saturday morning. This time Sam rode with Elbie. Oh, he is LUVIN' all the attention from the girls, little charmer. And the colour-coded hats was purely coincidental by the way.  The weather played along beautifully, pleasantly warm with loads of clouds to avoid having to stress about sun exposure.  Yet again, Sam adored his time at Haven of Hope. And, an unexpected advantage, having to run alongside the horses to keep up is providing mom and dad with some much needed exercise. 

 

Yet another love affair developing...while Aunty Cheryl kept checking in to make sure her baby was doing okay. What an amazing group of ladies at Haven of Hope. Love you guys xxx

 

 

Meg feeling a lot more comfortable on Knight and even managed a little independent riding towards the end of the morning.

 

So, Sam's new morning ritual?  As you all know by now, Sam's still-not-resolved sleeping issues usually result in me putting him in our bed (Ja Ja! Co-sleeping is bad) to a)avoid him shattering the bones in his hands and arms with the sheer force by which he slams them into the side of his cot and b) in a feeble attempt to try and get something remotely resembling sleep myself. Which means that every morning Sam wakes up in our bed and insists on being delicately transitioned into the new day with some cuddles and then some i-padding before having to get up and face the big bad world.  And, even more entertaining is that he's taking to i-padding with his toes.  Because being somewhat "different" is not enough...he HAS to go the whole hog. 

 



 

 

 

Back to *BLESSINGS* (Okay. So the "flow" of my posts needs a little work lately. Hehe)

 



Both Sam's physiotherapy costs for the entire year and the cost of the walker have been gifted to Samuel by members of our families.  As you can imagine both these costs are substantial.  There are no words which can adequately express our gratitude and appreciation  (you know who you are xxx). The best we can offer is a heartfelt and emotional THANK YOU at lifting such a heavy burden from our shoulders. Does the Lord not work in truly wonderful ways? xxx

Sammy Singing a Lovely Song

Sam has being making a new sort of sound. Although I know that any form of verbalising is in no way an indication of whether Sam will speak one day...his "talking" is still terribly amusing and oh-so cute.

We FINALLY made it out to Haven Of Hope Equine Aid Centre this last Saturday.  We have not been there in forever. Sam had such a good time, he even started falling asleep mid-ride.  And never a wasted opportunity for therapy, at one point Thembi's stride slowed down a little but Sam's little body kept on with the "rocking" motion which is apparently really beneficial for his walking and gait development. 

Sam and Aunty Cheryl on Thembi, completely relaxed and enjoying having a far less anxious support behind him, than his Mom ;)

Meg on Knight for the first time...rather chaffed with herself that she's riding the beautiful creature she once saw as being terribly intimidating

Aunty Marili and Sam's friend Antoni xxx

Neil and Elbie, part of HOH's support, doing an awesome job leading Thembi and Jabu for our boys

Talking about walking and gaits...so Sam went to test-drive the walker Solutions had sourced for him. And it was a perfect fit.  Sam took to the walker immediately, doing a couple of laps around the shop amidst cheering from us, the Solutions' staff and even a few contractors attending to some renovations on the premises.  The walker has been undergoing some "pimping" to make it even more comfortable for Sam and is now ready for collection.  We can unfortunately only fetch it tomorrow morning...watch this space for pics :)

Sleeping : Sam had seven absolutely awful nights...throwing himself violently into the sides of his cot for hours-upon-hours.  He had a nasty fall on Wednesday morning (last week), slamming his chin and chest into the tiled floor at home. Since then he repeatedly signs "sore" but his complete comprehension of the "sore" sign is a little troubling lately. Sam signs "sore" for pretty much everything now...everything which possibly makes him sad or distressed...like having to go sleep, not wanting to eat, etc. Anyway, I have worried that perhaps there is an underlying injury from the fall which is bothering him, although he still drinks his bottle and does chew. He just seems to be constantly fiddling his mouth, quite often flinching or in obvious discomfort.  When we saw the dentist at the end of last year, she did point out that Sam still had a few molars to grow into...so this could also be the problem.  He's also battling with a bit of a nasal drip and blocked nose at night which could be causing a bit of a sore throat. Urrrggghhhhhhhh! So tired of guesswork.
But...and it's a BIG OL' BUT....last night Sam went down at about 8:30pm, did not rock/throw/bodyslam himself once during the night and only woke up this morning when I physically had to wake him just before 7am so we could make it to OT on time. 

Awesomeness....as usual, I cannot pinpoint any physical thing I did remarkably different, except for this one thing.  Usually when I pray at night, I start with my "thank you"'s and then move on to my petitions. However I have to reluctantly confess that more often than not, I fall asleep before I've even made it through half of my petitions.  (Embarrassing but true <BLUSH BLUSH). Last night, after experiencing some really scary sleep-deprivation behaviour during the course of the day (especially when driving from physio yesterday morning and finding myself repeatedly drawn to the righthand curb the whole journey) I excused my self-absorption to the Lord and could only manage a pitiful "Dear Lord, please let us have just one night's good sleep...for both mine and Sam's sake".

Need I say more? 

xxx

Uncertain...

...of my emotions about tomorrow. 

Over the last few weeks I've been on a mission to find Sam a walker.  What an experience...an incredibly frustrating one.  Particularly when you realise that some companies are quite at peace with taking advantage of your near-desperate quest to benefit their own financial gain.  The last quote we had was an amount of R34,500.  I could only laugh....what do you even say to that?  Sure! What the heck, I'll take seven...a different colour for each day of the week. Eish!

Last Thursday Brampies took a picture of the walker we've been looking at to a company he remembered manufacturing medical equipment. This company in turn referred him to another company, quite close to home. Sam and I then went in on Friday morning (on the way back from his opthalmology appointment - which got a thumbs-up) and found the staff wonderfully helpful.  They assured us they would do their best to try and find, at the very least, something similar to the Trekker or even modify one of their current walkers (mostly for adults) to accommodate Sam.  I just received a call from Maryna from Medical Solutions to say they've managed to bring a walker down to Cape Town which they think would be suitable for Sam...and asked if we'll come in to "fit" it tomorrow.

Every time I picture Sam in a walker, I get butterflies in my stomach...which butterflies seem to have an invisible string attached to my tear ducts which then go into super-overflow. I know I've blogged about this before and for a good reason - I just can't seem to move past it.  Who knows why? I have such an emotional block about this silly walker. I know Sam NEEDS to be more mobile - for all sorts of reasons : development, independence, medical (those little knees)...even physically, so that those little calf muscles can work on becoming as solid and muscular as his awesome little thighs (or "hams" as Chris calls them).  So - common sense (what little I have) sends a message to my brain saying "WALKER = GOOD THING". And then...right outa nowhere...my heart butts in, slamdunks a "WALKER =  HEARTSORE"...knocking my common sense message right outa play.  

So it's going to be a really interesting shopping trip tomorrow ;)

Praise The Lord - There's always something good to share though, isn't there? Sam has had his Buzz Lightyear ride-on since he was about 18months old.  Since his sensory/anxiety issues went South almost 2 years ago, he seldom sits on it and when he does, he is doubled over in pure fear. The same goes for the little rocking horse you can see in the photo background.  On Tuesday morning he was kneeling on the floor playing with the horse and asked to sit on it.  For the first few minutes, I held him around his trunk as I usually do, while rocking Sam, the horse and myself.  Excruciating cramps in my calf muscles eventually meant I had to stand up for a short while to relieve the pain...and would you know, the little dude was quite calm.  I then sat on the floor next to him for a while and it was a good few minutes before he asked to come off.  I waited a while and then thought I'd try the Buzz Lightyear car.  "Joy!" screamed my heart... AND my aching back. Again Sam was quite calm and happy to sit unsupported. Progress is progress, no matter how small or "every day" it might seem to some. 

So adore this little boy - my heart wants to explode with love when I look at him xxx



And too for my little Mommy 2IC (posing with her Academic Merit Award and Badge she received for her 2012 final grades).  Chris and I ventured out for a (very) short while last night in I-honestly-don't-know how long.  Sam was apparently relatively okay until he spotted a video of me on his iPad, then became quite distressed and started crying. Meg picked him up and walked around the house with him singing Twinkle Twinkle Little Star until he was feeling better. She also helped Brampies change his nappy. 

She's such a good girl and Sam knows it too - he rocked himself to sleep earlier, clutching a photo of her to his chest. 

xox

Sam performing Twinkle Twinkle Little Star

The sound's a little poor, so hope it (Twinkle Twinkle Little Star) comes through okay.

Rushing through Pick 'n Pay this morning, heading back towards the car I noticed (a little confused) several people smiling with amusement at us. Just before we reached the car, one lady laughed out loud and said "You're teaching them young lately!"  Sam had grabbed the Sale Ads from who-knows-where and was earnestly perusing what the specials were and, with him insisting that the canopy always remains down, I did not even notice. Sam's really into numbers and letters now so there's a small chance that that's actually what drew his attention...but, hey, let's go with the reading thing. 

Why I'm desperate for him to walk...by the end of each day, his knees are red and blue, swollen and horribly chaffed :(

Little Emma desperately needs your prayers

Below is a link to a page from the Little Fighters Cancer Trust, written by a Mom who has watched her little girl courageously fight the cancer that has ravaged her body so many times over the last few years.  We've heard that Emma has taken a turn for the worse - she is in desperate need of prayer and, really, a miracle.  Please take a few minutes to read Emma's Story and, gosh, shut your eyes for the mere five seconds it'll take to say "Dear Lord, please heal Emma"

Thank you xxx

Emma (left)

Great Expectations

So, in prepping for the upcoming year, I sat down with Meghan and chatted to her about what we expect from her this year...good grades, more responsibility regarding tidyness and helping around the home...you know, the same things we've been "discussing" for the last four years or so. Of course Meghan took the conversation very seriously....for about the two minutes it took her to reach the front door so she could happily resume the bicycle & hula hoop races, hand tennis games, treehouse building, archery competitions and the like which have kept her and her neighbourhood friends entertained literally from sunrise till sunset, almost every day of the holidays when we were at home. 

Yip...this sure looks like a kid who's snapped out of holiday mode

Then I sat down with Samuel and shared our expectations for him for the next eleven months. There were no biggies, just a few minor things like learning to either hold his own bottle (Oh, yes please!) or at least a sippy cup...AND.....learning to walk. Now that we've mentally prepared ourselves for these events, we've gone full steam ahead into the necessary "training" required for both of these conquests.

So the sippy cup task is going well! Sam's aversion to holding his own bottle is just so completely mindblowing.  I've discussed the matter at length with all three of his therapists but no-one can really say for certain what the problem is.  There is definitely a major sensory element involved as he's on the verge of gagging if I try and place his hands on the bottle.  There's also a co-ordination and a simple physical ability element involved as Sam cannot grasp the bottle securely in one hand with his little thumb but still mostly neglects using his right hand unless you remind him that it's there when you see him battling to do something with just his left hand. While he seemed relatively willing to touch the sippy cup, albeit quite gingerly, he would not allow me to put the spout anywhere near his mouth.  There was a time when I could squirt little sips of juice, etc into his mouth from a squeeze bottle but he's also stopped tolerating that.  So....perhaps it will be easier for me to learn to deal with the awkwardness of having strangers look on with confused and (too often) disapproving faces at me bottle-feeding my almost 4 year old son.    

With Brampies having moved out at the end of last year, working through each day's chores has become quite challenging so it's been wonderful to have Meghan helping out with Sam where she can. 



Don't worry - he's face looks like that when I feed him too...LOL

Sam has become delightfully brave at attempting new textures with regards to food. Of course there has to be at least a one-step-forward-one-step-backwards balance with Sam, so he's not too keen on the squeeze bottles anymore but while reclining comfortably against me while I sat eating my supper one evening, a little hand reached in under my arm and helped himself to some of the food off my plate. The very next evening Sam sat at the counter while I grated some cheese and after I pushed the plate out of my way and, unintentionally, within his grasp Sam helped himself to a handful of cheese as well.  Unfortunately though Sam eats extremely slowly so when we're reaching the forty-five minute mark on a "solid food" meal, I resort to pureed food rather just to make sure he's getting enough nutrition. 

I am so excited about Sam's signing at the moment...although he first had me a little worried.  I've tried to teach him the signs for the things I feel he would most need to communicate to me...like "more" which he picked up a while ago, "bottle" (although it's a Sammified version of bottle as with many of Sam's signs and I am not sure anyone outside of our home would know what he's indicating) and most recently, "sore".  Now "sore" and "more" not only sound the same when verbalised but have really similar signs too.  Sam easily copied "sore" the moment I showed him but then started using it for "more" as well. Typical, I thought, not only did I NOT teach him "sore", I've now confused his "more" as well. 

"Sore"

 

"More"

 

 

Sam, however, painfully reassured me that he had in fact mastered "sore" when he knelt next to me while I packed his toybox away one afternoon and just as I closed the lid, stuck his hand in and got his little finger caught. While crying hysterically, he frantically signed "sore" over and over.  Not the most charming way of having to find out but it certainly made me realise that I still tend to underestimate our little smurfy dude sometimes.  I am loving that he can tell me whenever he wants a bottle, even though he seems to be having so many more bottles a day than he used to...I can hardly tell him "No" when I am trying to show him that signing will help him get across what he wants.  Which makes it quite difficult to decide how to react when I put him into bed at night and each night brings with it a new "ailment" as Sam protests unhappily while signing "sore" and then points to his teeth...or tummy...or knee. Ai!

The Sammified version of "cry" - we are often ordered to cry for Samuel's amusement, especially Meghan in her most melodramatic manner. And often, while he is crying, Sam will passionately sign "cry" just to avoid any misunderstanding that he is, in fact, crying.

 

As you can see in the above pics, Sam's had another vomit-inducing, shriek-yielding haircut during which he emptied his entire evening's sustenance, including his Faverin, pretty much over everything within a 5m radius...which would include me, as usual. And that is not good.  I've completely stopped Sam's Melatonin as it was just making no difference whatsoever to Sam's sleeping and was not worth the trouble it took to get into his system.  The Faverin, however, has proved hugely successful so I take great pains to ensure Sam gets it each day...and keeps it in.

 

    

Random Pics :

Happiness

Fun

 



Awesome evening walks (Stilbaai)

Desperately Seeking my Mojo

Smurfy wishes for an awesome 2013 everyone :)

I seem to have misplaced my blogging mojo a few weeks ago. It's quite possible it got washed out with the litres-upon-litres of vomit (bleghhh) we were shovelling four to five times a day towards mid-December, when Sam struggled through possibly one of his most health-challenged periods. After 9 days of unbreakable fever, no eating, loads of slime, coughing, croup and of course the relentless v-wording it felt like we'd never see a healthy Sam again. 

Needless to say, this trial too passed and Sam was healthy enough for us to go spend a few days in Stilbaai with family. 

While Sam was sick, the only activity which seemed to keep him calm and comfortable was "going ta-ta" so at least once a day, after he'd gesture towards the garage waving his little hand eagerly, we'd take Sam for a no-destination drive.  Thankfully the "ta-ta bug" was still biting on the way to Stilbaai so Sam had no trouble enduring the lengthy 4 hour drive. 

Sam's been prone to lovely 2hr-long afternoon naps lately and with Dad being on holiday too, he eagerly took advantage

Meg and Chrisna waiting for the 2hr-long nap to end so that they don't have to be on noise restrictions any longer

Sam loving the 3-way chair enjoyed by his uncles and cousins over the last 35 years (Yes, really). Sam's Buzz Lightyear car had to of course be brought with, along with several other toys and favourite dvd's, to keep Sam's environment as familiar as possible.

On Friday afternoon we drove out to Sam's cousins, Cayla and Dewald, in George.

Sam was keen to join them in the pool but settled instead for some sideline flapping which left him just as wet anyway

Both Dewald and Cayla insisted on giving Sam one of each of their toys.  From Dewald Sam got this really awesome light making, noise emitting, vibration yielding object. 

And from Cayla, one of her babies :) to keep Sam company along the 2hr drive back to Stilbaai, along which Sam finally lost his "ta-ta bug"

For the first time in a long time, Sam had a really good night's sleep on Friday night.

Which meant we could hit the beach before 8am already to avoid both the extensive crowds and sweltering heat

All beached out and ready for breakfast in his Smurfy towel

Sam slept really well on Saturday and Sunday evenings, waking just before 10am yesterday morning. He was so keen to see the New Year in though that he was awake from just after 12am till just before 5am this morning...but is making up for it by still laying fast asleep right now.

Enjoy your New Year's celebrations everyone....here's hoping I stumble across that darn blogging mojo soon xxx

Sleep Wars (3) : A changed strategy

NO WAYS!

I cannot believe it's been so long since I updated the blog. Life, as always at this time of the year, is a nerve-wracking whirlwind of various concert rehearsals, studying for exams, tears and sulking associated with studying for exams, more concert rehearsals...trying desperately to think of cost-effective but excitement-yielding gifts (Yes, Disillusioned *is* in fact my second name)...the actual exams...the actual concerts...as they say, time flies when you're having fun? ("Disillusioned" seems to be a popular second name).

So, taking everyone's chaotic schedules into consideration, here is a condensed yet thoroughly comprehensive summary of the Sleep Wars Saga over the past few weeks :

First we didn't sleep, then we did, now we don't. 

The End

And now for the more detailed version...

On the 14th Nov Sam and I went off to see Doc Paul, after sending him a brief e-mailed explanation of what had been going on with Sam's rocking-and-rolling nighttime jiving.  I find this a hugely beneficial exercise for both the doc and us (the pre-consult information, not the rocking-and-rolling) as it gives them time to research the scenario completely and come up with a workable solution in less than the few minutes assigned to each consultation.  The sad thing is that I am quite often disappointed to find that the doctor has not read the e-mail or, as was the case with a recent new specialist's appointment, was asked by the receptionist when requesting the doctor's email address, to not send her an e-mail as she would not have the time to read it. Thankfully Doc Paul had taken the time (major smurfy kudos to him) and had obviously given Sam's situation enough thought.  Ultimately Doc Paul shared Sam's OT's view that Sam's sensory and high-anxiety levels have reached a point where basic occupational therapy exercises like brushing, swinging, etc are not as equally intense as the symptoms themself.  While he agreed that it was time to resort to medication, he explained carefully why meds like Vallergan, Urbanol, Aterax, etc are not the most efficient treatment and that if Sam has had a bad reaction to just one of those, he would more than likely react the same to the rest of that "group" of meds as well.

So instead he prescribed a very low dose of Faverin for Sam which effectively is an anti-depressant when used for adults, but has been found to be extremely successful in treating children with high anxiety and/or OCD/repetitive behaviour issues...in other words...Samuel. It takes approximately 2 to 4 weeks for the medication to start working at its full potential and we are only on Day 12.  The first few days and nights there was no remarkable improvement, then Wed-Fri nights we had absolute, pure BLISS with Sam sleeping straight through from 8pm-ish to after 7am without any rocking-and-rolling or practically any movement at all going on.  And all was well with the world...well, other than that Sam was not in the least bit amused at waking up in his own bed as opposed to snuggled comfortably between Mom and Dad.  And this is where the inspiration to change his strategy was born. 

On Saturday night, or rather Sunday morning, somewhere round the unearthly-wee-hours our littlest dude woke up.  He didn't rock-and-roll in his sleep. He plain and simply woke up.  And decided it was as good a time as any to play a little peek-a-boo with the duvet, search excitedly for imaginery Po's and La-La's lurking within the blankety darkness and practice his most awesomely adorable smiles and giggles. Ai Ai! What is a mom to do when confronted by such ruthless and unleashed cuteness? Well I tell you what she simply CANNOT do....ignore it.  So my giggle-stifled, mock-scolding commands that Sam lies down and goes to sleep were most certainly not obeyed by the little smurf.  Unlike Chris (and probably most other dads) I've yet to master the art of ignoring such antics, no matter how desperate I am for sleep.  Sunday night was pretty much a repeat of the previous and last night we did about a half-hour of playing and about an hour of rocking-and-rolling before Sam eventually went off to sleep again.

While our sleeping issues at night are still very much a work in progress, there has definitely been a huge improvement with Sam's behaviour during the day.  The snowballing lack of sleep was making him quite heartbreakingly difficult to cope with during the day with more meltdowns than I'd like to remember.  There are still tantrums and frustrations aplenty, but nothing in comparison to our pre-Faverin journey.  And, while there are still occasional nap-starved days, the norm over the past few days is hovering around an hour to two hours napping in the afternoon - YeeHaa! One out of two is quite satisfying for the time being ;) 

PainfUL Blogging

THIS IS WHAT MY TYPING looks like if I don'T TAKE THE TIME TO "FIX" IT AFTER EVERYTHING i type.  the caps lock key has a (warped at that) minD OF IT'S OWN and KEEPS GOING on anD OFF AT really rapid, RANdom inTERVALS.

I've tried to outsmart the key by non-chalantly reaching for the keyboard when the key goes off, pretending to look elsewhere whilst whistling a merry tune, but in the split second before my finger touches the keyboard the little light starts its flickering dance...it is pure FrustRaTION at ITS utMOst!

Of course we can take the computer in to be repaired but apart from the worry that having your pc repaired usually results in acquiring some problems you didn't even have to start off with, it will apparently take 2-3 weeks before I have it back! That would be like telling me to survive without air or, horror of horrors, chocolate for 2-3weeks...this is my lifeline to our RTS family after all. Take yesterday for example, the whole no sleeping/lots of jiving thing was really getting me down (that and surviving on little scraps of sleep here and there) so I posted the video's on our RTS Facebook group and it turns out that Sam is by no means the only little RTS sweetie who has dealt/is dealing with this problem...and here I was thinking that my littlest dude did not think being 1 in a coupla hundred thousand was unique enough. Nothing makes it easier to deal with a new challenge than knowing you're not doing it alone, whether it's a few minutes or an ocean or two separating you from your support.

Sam's OT is busy doing some research on Rhythmic Movement Disorder which we'll discuss on Tuesday morning and then I've set up an appointment with Sam's paed on Wed morning to discuss doing a sleep study. At worst, the net information indicates that most kids suffering with RMD tend to outgrow it by the age of six...WooHoo...only another 1,OOO or so sleepless nights to endure! And some say this whole silver lining thing is hogwash...tsk tsk.

Smurfy Jive : Sleep Wars (2) : Any thoughts?

So we had four really good nights last week with very little sleep-jiving going on and when it did, it would last for 30secs to a minute, max...especially Saturday night when Sam did another awesome straight sleep through until just after 5am.  From Sunday evening though we were back to the very challenging rocking/spinning/jiving/whatever-you-want-to-call-it with another awesome three hour non-stop session this morning till about 4am.

I cannot for the life of me figure out what was done differently between the two nighttime scenarios as I am trying super hard to to keep Sam's days as strictly routine as possible. 

Below are video's of the two different types of rocking/jiving that Sam does...this is the "good" version which he does when he's merely trying to fall asleep. At least here I can still try and communicate with him and attempt to soothe him. At night however he seldom wakes up during these little jiving sessions and is far less cautious, eventually banging his head into whatever hard surfaces he can find.  And if you try and restrain hin or place something soft around him to cushion the blows, he becomes even more agitated.

The videos give a rough idea of the type of movement Sam does...I am really keen...no...pretty desperate at this point to find out if there any other children from our RTS/special needs family who do this?

Smurfy Swagger...this is how I roll (2)

So I think I have mentioned how Sam's physiotherapy sessions usually run but just in case I haven't - we start off in the neurotherapy room where Heidi works on balance, crossing midline, transitioning from kneeling to standing, some roller and mirror play, etc. I'm sure most of you are pretty familiar with that drill already. However, when it came to lying Sam down on the mat for some serious stretching, he used to have one hectic smurfy-wobble. If the poor little dude won't even SIT on the floor because of all his SID issues, what are the chances he'd be happy lying, right? So for quite some time now, Heidi finishes Sam's therapy off on the normal physiotherapy tables attending to all his stretches while he lays, quite calm and relaxed, with the speakers from the iPod whispering all his favourite tunes ("He's Got The Whole World" is the current favourite) into Sam's ears. A few months ago Heidi started introducing Sam to the walking trolley but, as expected, he was petrified of being left holding on on his own so Heidi would support his torso as he walked himself over to the therapy tables. Last week, however, Heidi sneaked away mid-walk and Sam quite happily continued the walk on his own. For fear of distracting him and initiating a fall, I opted against whisking my phone out to video the scene...but this week I was prepared!!!

I watched the video over and over and over with excitement.  But then, still quite unexplainably, it made me heartsore. And I had to stop watching it.  I've thought about the whole incident alot over the last few days, trying to figure out how such a huge achievement for Sam could possibly make me sad.  It's difficult to put into words but I think most of the time I tend to see Sam as "normal".  His little unique way of being has just so completely become our normal that I don't always think about how the outside world sees him. Watching him in the video, he seemed so incredibly fragile and almost *lost*...I don't even know if that's the word I am looking for. My heart just suddenly became extremely heavy with all of the struggles and challenges he faces each and every day...and maybe, just for the briefest of moments, I desperately wanted him to be a *normal* three year old...the outside world's normal, not ours. 

Is that terrible?

In my defense, we are severely...and I mean SEVERELY as in literally walking into walls, forgetting destinations en route, having serious speech malfunctions...sleep deprived in Smurfville. In 62 days we've had 2 nights of proper sleep (being from 9pm till round 5am without any significant waking episodes) and 3 nights of somewhat-disturbed sleep, as last night was...sound sleeping from 9pm till round 1am and then about 3 hours of that soul-destroying rocking/violent head banging before Sam eventually exhausts himself and has another hour long nap or two. The other 57 nights start with the rocking/head banging within an hour of Sam going down. We have now resigned ourselves to having to put Sam through a sleep study.  I do know that many of Sam's RTS siblings have undergone a sleep study, some of them more than just on one occasion, but I also know that Sam (the very same Sam who tolerated having his blood drawn with some pretty mild whimpering and then proceeded to indulge in some projectile vomiting when Doc Paul simply placed a plaster over the tiny puncture wound) is not going to do too well with having his head and chin covered in probes and tape for 24 hours. But if the sleepless nights aren't enough motivation to find a way, then trust me that having to manage this little smurf the day thereafter, sure is. Let's just say that there are tantrums a-plenty and leave it at that.

When not fighting sleep or throwing tantrums so severe they measure on the Richter scale, Sam's current favourite pastimes are lots and lots of swinging...almost always accompanied by his music...

 ...or iPadding.

 Sam is seriously addicted to his Signing Times app at the moment but it apparently only has the desired effect if he is nose-to-screen with the iPad, at the very least...there might even have been some licking involved.

Some serious contemplation after a particular window drawing episode I Facebooked about:



 I attended my 20 year High School reunion last Saturday...and it was *awesome*.  Not just to see everyone and catch-up but also the pure bliss of having a couple of hours breathing time. I sneaked into the house at 12:50am...just in time to catch Sam on his 1am wake-up call...so Sunday was a super interesting day...LOL! But it was still so worth it...looking forward to our 20yr and 1month reunion on the 27th of this month...woo hoo!!

Okay, perhaps a little too eager then :)   

Me and the gals, Sam and Debbs. Can't believe my head was still wafting around everyone's knees despite a mean pair of wedges I was wearing (which wedges also contributed to a very attractive bruise I was sporting at the reunion, after wiping out at home before I even left. 

Absolutely have to get out more *sigh*)