The unchanging....

If I had a Rand for every person who's ever told me how great it is that I can remain lighthearted about most of our challenges, I'd have...well a handful of Rands...enough to buy a lottery ticket and put me in the runnings to become a MILLIONAIRE! (As long as "millionaire"'s somewhere in that equation, right?) Usually I laugh and say "Well, if I don't laugh, I'll cry...and if I start crying, I'm not sure I'd stop" and then we laugh some more.

Few realise how completely honest I am being.

Some days I just can't muster the energy to fake okay. Today is one of those days.

Sam has many issues relating to his RTS, Cerebral Palsy and Autism. Some are pretty straightforward...reflux, constipation, etc...some are more serious...apnoea, physical abnormalities, odd seizures, etc. I can live fairly peacefully with almost all of these and the care they require. They are all tangible issues...things I can feel or see or smell or hear.  They are all fairly common issues too, maybe not always effecting one person at the same time, but isolated they are all issues that when discussed with someone else they are easily recognised and relatively easy to treat, whether it's upping Movicol, reducing fluids before bed, sleeping on a wedge, having regular physiotherapy - they are mostly tangible problems with tangible solutions.

They are the easiest part of our journey.

And the hard part? The hard part is something that cannot be seen or heard or felt or smelled. If you sent Sam for an MRI/scan/scope it would not show up like a tethered spinal cord or malfunctioning oesophagul valve or thickened bowel wall or funky airways or Periventricular Leukomalacia or any of the other things responsible for the above ailments.

FEAR!

Irrational, uncontrollable, all-consuming, life-draining FEAR!

You just cannot begin to imagine what sort of fears a 5 year old could possibly have that might be anywhere near as debilitating as what I'm trying to imply. Let me blog you through our last 36hrs....

After averaging yet another night of only 3-4 hrs sleep, Sam woke grumpy, with a grumbling tummy due to his growing aversion to anything remotely resembling food and the sight of his dad in bed next to him. Yes, sounds like a harsh statement for me to make but Sam knows that Dad not going off to work means weekend which in turn means a change to his daily routine. Pediasure bottle made and handed to shaking hands - Sam has a fear of liquid moving, whether it's waves at the beach, water from a sprinkler, water poured over him in the bath or, as in this instance, milk swishing about in his bottle. It takes him a good few minutes to build up enough courage to put the swishing milk to his lips, almost choking as his shaking prevents him from swallowing calmly. Still, it's an accomplishment as sometimes fear trumps hunger and the bottle goes flying to the floor as if it might cause him physical harm. Fear 0 : Sam 1

Once we're all showered and dressed, off to the kitchen to prepare Sam's porridge. Throwing good parenting skills out the window, I put Sam in front of the TV with his favourite show hoping it will distract him enough to at least tolerate a few spoonfuls. Fail. The second I bring the bowl in he starts gagging. Fear 1 : Sam 1

Dad leaves to drop his car off at service garage. Needing to follow shortly so that I can collect Dad and we can go to shops, I opt for another Pediasure bottle. Sam spots bottle entering the room, gags and throws up what's left of the previous bottle. Fear 2 : Sam 1. Off to fetch dad and brace month-end shoppers on an empty stomach. Or so I thought.

Arrive at service place, walk into dimly-lit garage to see how it's going with car. Sam starts gagging. Mom does not panic as there can be precious little left in the kid's stomach. Wrong! Sam showers the parking lot and mom with a surprising amount of fermenting Pediasure. Fear 3 : Sam 1

Back home to shower and de-puke. Survived a thankfully uneventful shopping trip for nappies and Pediasure. Once home and after yet another food-sighting-induced-gag-session, Sam manages about 5 spoons of mashed potatoes and 120mls of Pediasure. Desperate to have this small helping actually digested, remain at home. Another night of restless, body-bashing follows.

Sam wakes a little more cheerful this morning until his bottle is placed in his hands. More gagging, but luckily this time puke-less.  Same story as yesterday when porridge bowl is spotted. Surrender and head off once again to supermarket for the rest of the family's needs. Barely in shop a few minutes when employee decides to remove the strip which keeps the prices in place on the shelves. The 'ripping' noise sends Sam into instant gagging mode and over the next few minutes, Sam empties his entire stomach's contents (?) all over the trolley, shop floor and himself. Mom flees with vomit-saturated kid and scarlet-faced teenager, leaving Dad to finish the shopping. Back home for bath and de-puking. Before heading back to shop to collect Dad, Mom swings by local church to collect two generously gifted items for her new playgroup. Upon pulling into the unfamiliar parking lot and choosing to park right in front of the open doors, a motherload of Pediasure is projected from Sam's stomach. Sam, carseat and car's seat all drenched. Phone Dad to advise we are headed home first for de-puking. Once Dad and groceries have been collected, retreat to our cave giving up (once again) on the Sunday afternoon family outing.

Washing machine works overtime for the remainder of the day, family members tiptoe around with their own food to avoid further gagging and eventually, after a mere 320mls of Pediasure for a straight 24hr period, Sam falls asleep exhausted from a day filled with unexplainably frightening things.

Mom sits next to him on the bed, listening to his grumbling tummy and shushing him when he whimpers in his sleep, feeling helpless and lost about how to help him. Is it possible to avoid all the things that cause her 5 year old so much anxiety? Yes, of course...but it means never leaving home. She wipes the tears from her cheeks as she reminds herself that no-one gets this part of Sam...of their lives, especially the doctors and specialists...and realises that until someone does, it can't ever change.

FEAR 54785588 : MOM 0

Lost in Translation

Perhaps a more accurate heading would be "Lost in Interpretation" but it doesn't quite grab one the same, does it?

Either way, the way Sam interprets information sure is fascinating. When I was sort of groping around for behaviour guidance, I introduced a naughty chair as a means of discipline. And then loaded a pic of it onto the iPad together with the other items relevant to Sam's life, as well as to all those beautifully professional hand-drawn books Sam has a habit of dragging out of the woodwork...particularly when we're going out in public. Next to the naughty chair was a little poster displaying which possible actions would have landed that smurfy little posterior in the chair and what the acceptable alternatives would have been, eg. smacking vs soft touch.

Well no sooner had I added them when I had to remove all the pics because Sam would be happily flicking through them, minding his own business, until a pic of that darn naughty chair popped up. Then instantly his hand would go out and slap whoever was within range...slapping meant naughty chair and naughty chair meant slapping.

By now it's become common practice (with all children) to reinforce positive behaviour as opposed to focalising negative behaviour, eg. don't throw vs please put down softly. Sounds pretty simple, doesn't it? Except when the 16yrs of parenting prior to needing a more attentive approach to a child with communication challenges was filled with "No's" and "Don'ts", those allegedly-detrimental statements always seem to run a kickbutt race to the finish line that is my mouth! #thehorror

The other problem of course is the very simple fact that, when finished with something, the more natural process seems to be to throw it down instead of putting it down, well for Sam anyhow and, from what I can remember, a few of Sam's RTS siblings have/had a tendency to do the same. For this reason, I very seldom take the iPad with in the car and, on the odd occasion I do, it is only when there will be someone sitting next to Sam at the back. Up until last Friday that is.

About to leave home for a particularly long wait outside Meg's school, I passed the iPad on the table just as I was wondering how I was going to keep Sam occupied in the warm car. A quick back-and-forth of "Should I, shouldn't I" ensued and before I knew it, Sam was in his carseat and being handed the iPad.

DO NOT SAY "DON'T THROW!"
DO NOT SAY "DON'T THROW!"
DO NOT SAY "DON'T THROW!"

"Sam, when you are finished with the iPad, ta for Mommy"

"DO.NOT.THROW.THE.IPAD!"

WHAT??? WHO SAID THAT???

Well, before I had the chance to pounce on the sneaky scoundrel who'd dared utter those words (in a remarkably similar voice to mine, I might add) , the iPad was out the still open door and hitting the cement floor with a stomach-curdling CRACK!

Mom's reflexes    :  0
iPad repair place :  3

There very nearly wasn't a 3rd round for the iPad repair place with more pressing issues needing attention, but Sam's granny came to his rescue by offering to see to the costs. And, with today been the fourth day without his electronic appendage, frustration and lack of understanding why he could not have his iPad, reached an almost unbearable high and saw me getting walloped on the forehead with a wooden hammer during occupational therapy.

Mom's reflexes   : 0
Bump on noggin : 1

Hmmmmm...perhaps it is I who is lost in translation!

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

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

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

The voice said...sure!

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

The voice said...sure!

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

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

Sam's only happy place at the moment :

Twerking and ending the word

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

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

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

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

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

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

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

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

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*)

Straitjackets, Melatonin and some serious v-wording

So exactly 20 days ago we moved house. And exactly 20 days ago we turned an already anxiety-filled and sensory turmoiled world upside down for Sam.  I knew Sam would go through a period of being unsettled and super-di-dooperdi defensive...but boy was I clueless.  A little more clingy? For sure. A little more vomit? Would it be Sam if not? A few extra meltdowns? Heck yeah! Even more disrupted sleep than usual...bring it on! But....and that's a smurfinormous big ol' BUT...hours-upon-hours of freaky nighttime spinning from side-to-side? Well that one just completely threw us over that exceptionally fine line between coping and grappling for those lovely white straitjackets.

I won't deny that there have been one or two days during the last 3 weeks when I shed a solitary tear while trying desperately to bring Sam around, amidst screaming and vomit, from one of his emotional overloads while listening intently for the doorbell indicating that one of our, now too-close-for-(Sam's)comfort, neighbours had finally resorted to phoning either the police or child welfare or both to please come and rescue the poor child next door who was obviously being barbarically abused by his mother. Surprisingly no such rescue has yet taken place, despite an hour-long meltdown last Friday morning. And yet all of these hiccups would have been so much easier to cope with if it weren't for the even more stressful nights.  Before the move, the evenings at least provided an hour or so to relax in front of the computer or tv and then grab a couple of hours sleep (albeit it sometimes disturbed) to rejuvenate for the next day. By Monday morning, after less than an hour's total sleep, the situation had become desperate.  Sam's OT has been keen for me to take Sam to a very well-known neurologist paediatrician as she is worried that Sam has reached a level of anxiety and sensory disarray that cannot be overcome without the help of medication.  I have been extremely hesitant to resort to this as, as fiesty and challenging as what this little smurf is, he has the most awesome spirit and I would hate to do anything that might change his personality or break this spirit.  Dr B once told me that he believed the key to Sam's sensory problems was firstly patience and secondly acceptance that, to a degree, they would always be there...with which I totally agree. But by Monday morning I had to consider the affect all the sleepless nights and anxiety-filled days were having on Sam so off to the neurologist we went. 

The consultation was not one of our most charming...Sam vomited all over the place the second the doc touched him, which sent Chris back to work covered in a little eu de puke. What we did manage to take away from the appointment was the possibility that Samuel's spinning was more a frustration-filled reaction to not being able to reach deep sleep and then stay there, as opposed to a frenzied attempt at self-soothing.  We were given a prescription for Choral Hydrate to assist Sam in reaching deep sleep but were told by the pharmacist that it has been completely removed from the market.  The doc then faxed through another script yesterday morning for a nightly dose of Melatonin, with which I have no argument against as I know many of Sam's RTS siblings use this, as well as 5mls of Urbanol.  Mmmm..Google? Of course! Only to read that Urbanol is predominantly used in patients with Epilepsy and also has some cautions regarding use in patients with respiratory disease and apnoea. Now I don't know if obstructive apnoea is relevant with that caution, but Sam sure has had one or two respiratory issues in his life.  So, in utter uncertainty whether to try these meds or not, I sent a Whatsapp message to Dr Sinclair just after 5pm  :

Sidestep : I sent a Whatsapp message...not a polite email or professional phone call...a rather forward infringement on his "personal space" even I have to admit.  And it is not the first time I've done it (there was a brief panic moment at the beginning of the year when I thought Sam might have come in contact with Measles). And within five minutes, Doc Paul had replied.  By now, you all know how much I appreciate the rather few "Wow!" doctors out there so I can assure you that having such a quick and (seemingly) unoffended response to a seriously sleep-deprived and insanely emotional mom who is literally counting the minutes away to the possibility of another crazy night with a certain little smurf, is beyond invaluable :) There are just too many docs who would've asked that I rather bring Sam in instead, for fear of missing out on a consult fee.

Anyhoo, Doc Paul okayed the Melatonin but was also wary of the Urbanol. So come 7pm I readied Sam's Melatonin, even more delighted at the fact that it has no real taste and dissolves super easily in a little water. Within half an hour, Sam was yawning and satisfyingly sleepy - Woo Hoo! Success! Really? Of course not - Sam first started shaking, then started crying and then started vomiting...and vomiting...and vomiting. Definitely not reflux because reflux, unfortunately, doesn't come with such a prologned warming-up warning. Knowing of so many children who are doing quite well on Melatonin I didn't even bother to read the possible side-effects, not least of all because the pharmacy had stuck their label right over it.  But when the v-wording started we tried to peel what we could off the container and could just make out that Melatonin can, although rarely does, induce nausea, cramping and vomiting.  Oh Sam...tsk tsk...the relentless lover of all things rare, unknown and one-in-a-million (or would that be 300 000) chance worthy.  So another restless, crying, spinning and largely sleepless night was enjoyed by all *bangs head against wall*

Amazingly enough, the only thing that hasn't really been hugely effected by this whole moving upset is Sam's eating. He had a few wobblies with most of his therapies which were mostly spent with his arms tightly wrung around my neck.  There were two really entertaining sessions week before last though, one OT and one ST, where Sam vigorously demanded that both myself and the relevant therapist, Christa and Tanya respectively, sleep on the floor which is a command he loves watching on his "Verbs with Milo" app on the iPad. It would have been terribly funny to watch, I am sure, and the fact that both therapists were so animatedly accommodating just made it all that more amusing to Sam.  Although there was one rather challenging session, also suprising is that Sam's physio sessions have remained relatively unchanged.  Sam is doing loads of "walking" at the moment, mostly to keep those tendons nice and flexible in the hope of avoiding that surgery Sam's orthopaed mentioned but also because Sam quite enjoys being on his feet now.  I no longer have to hold him securely around his torso, but allow him to take his full weight on his feet with just my hands on his shoulders providing a little bit of pressure and the occasional safety catch when he does lose his balance. 

Sam has also been making some new sounds..."th" quite often as well as "sssss" and even made a startling almost-proper-sound on Monday evening which sounded something like "Buff" (obviously referring to himself of course). Even more fascinating is the number of signs Samuel has taught himself from the Baby Signs app on his iPad. His physical development and sensory processing make-up might be all over the place and stagnating, at best. But that little mind is running full steam ahead and just soaking up every bit of mental stimulation it can.  I can just see him in 30 years time....sitting at a rather fancy desk, happy-flapping and spinning around on his chair atop a vomit-spewn carpet and half-chewed nameplate sporting the words PROFESSOR SAMUEL "SAM-THE-MAN, SMURF"' DE BEER.  Hehehe!

While it seems as though Sam The Conqueror is fast becoming a monthly blog, it is most definitely not intentional.  With any luck and a whole lotta prayers we'll get Sam back into the swing of things before I forget my own blog addy. But till then, this is what we had to resort to today :

Makes for not great quality posting and a really sticky keyboard but a post nevertheless  :)

Waiting for Tanya at speech therapy on Thursday - such a big boy. Doesn't matter the mag was upside down, he would just grab one from the stack next to him, turn it around and throw it on the floor.

And big boys need big boy lunch....like yummy french toast

Has to lean in super close just in case he misses something

Sleep or no sleep, he's just too darn cute xxx

Just a short post....

.....to say that we are still here but everything is broken at the moment...including my pc and, most distressing, including Sam...

Smurfville under attack....

...serious attack...nasty BUG attack!

Err...no, that's a picture of me from last week...not the seriously nasty bug in question.

Last post I mentioned that Sam had been ill with a URTI.  Sam just seemed to be recovering, when I got sick last week and by Saturday Sam was all congested again, coughing by Sunday, gagging when eating by Monday morning and all croupy by Monday evening . I first tried to treat him naturally (because that usually works well?) as he'd just finished a course of Orelox but once we stumble across that croup-bark, we're heading for trouble.  So off to Dr B on Tuesday in the middle of a mini-storm with gale force winds and rain a-plenty.  Now usually all the mom-and-tot parking bays in front of Dr B's chambers are taken...all eight of them.  You would think eight mom-and-tot parking bays would be ample with there being only two paediatricians in the building.  But apparently not. What is, however, in ample supply is the number of people who have no reservation parking in these bays even though they are visiting the centre completely and utterly child-less.  The last time we had an appointment with Dr B I pulled into the parking area behind one other car, a white Jetta, just in time to see the driver pull into the very last M&T parking bay. I then watched the childless, 40-something-year-old woman trot fitly up the stairs to the entrance.  Had she at least shown some sign of physical hardship or disability I would have insisted she take the parking in any case. But such random acts of inconsideration usually means I (and several other folk I'm sure) land up having to park at the actual hospital itself and walk across to the completely separate building, awkwardly carrying 14kg's of smurfiness.  Here's a hint though to all those M&T snatching drivers...usually when a parent visits a paediatrician's rooms with...horror of horrors...an actual child on the arm...there's a really good chance the actual child is actually sick so having to walk from one building to the other is not always such a great idea.  Dare I even open that can of worms concerning disabled parking bay snatchers? Nope, we'll save that for another post. Yesterday, with the awful weather, I decided to leave for the paed's rooms super early so that I had time to wait outside the entrance for one of the M&T parking bays to become available...and fix the potential offender with a particularly scathing glare, if necessary.  Pulled into the parking area twenty-two minutes early and straight into an available parking bay, literally in front of the entrance.  Ouch!

After the usual luvin' Dr B bestows upon our little conqueror at the beginning of every consultation, he confirmed tracheitis (infection of the windpipe) and croup and sent us packing with another ten day course of Augmentyn (Double Ouch) and some cortisone (not enough Ouch's for that one).  Sam + cortisone make for a very aggro little smurf so the past couple of days have been fairly entertaining...first with Sam's relentless coughing when he eats...drinks...sleeps...breathes...and now with him being unconsoleably miserable.  And of course, excessive coughing coupled with a problematic little esophageal valve makes drinking of bottles and mealtimes just that little bit more exciting. The Academy award-winning performance was definitely Sam's total meltdown at 2am this morning.  He'd woken up crying, coughing and bunged up and with little lips ruby red and so dry they were shining, from breathing through his mouth. I tried to put a little coolled, boiled water in his mouth with a syringe (because of course Sam allows nothing passed his lips but Pediasure bottles) but in his half-asleep daze Sam must have thought I was trying to give him medicine and started crying hysterically...and carried on like that for a good hour with no amount of hugging and comforting being able to calm him down.  And of course at the end of it all, he eventually fell asleep with an even more bunged up nose and not a drop of water in his body.

Usually by Day 3 of the antibiotics and cortisone, there's a marked improvement so here's looking forward to tomorrow. I can't quite recall what sort of Winter Sam had last year (now if only I had some form of journal or electronic medium consisting of regular entries about the details of our lives, to which I could refer) but he wasn't doing too bad this year till this last month. Only four or so weeks to go and then hopefully we're heading towards some warmer weather. Oh my...and the daunting prospect of moving house which at this point looks like it's going to happen sooner than the end of October. Of course, with the passed two weeks revolving almost solely around illness there hasn't been much time to attend to all the details...and inevitable stress.  But perhaps that's a blessing in disguise.  There definitely has not been enough picture-taking and that is something I'll have to see to soon.

There has been one seemingly small but so hugely-significant conquest for us.  As mentioned previously, Sam's spatial awareness particularly with regards to his body, is simply apalling.  I had watched a video of one of Sam's RTS siblings, Brooklyn, enjoying a popsicle which she'd been holding herself and thought that perhaps if I persevered a little more with Sam, trying to get him to at least put an occasional food or treat in his own mouth, it might just improve the spatial awareness surrounding his face and, in turn and really the main aim, improve his fine motor planning with regards to handsigns meant to be displayed round the face. We have just recently discovered the Nestle baby treats on the market, specifically the little juicy chews which are incredibly soft, non-gag inducing and very Sam friendly, as well as their own mini-version of cheese curls. I first tried blatantly putting them in a bowl and offering them to Sam but of course he was not about to place that sensory-defensive little hand into a bowl of strange textures. Plan B was to put Sam's favourite dvd on, have him stand up at the tv unit and scatter the cheese curls randomly across the surface. At first I had to completely manipulate Sam's hand myself to pick the cheese curl up and place it in his mouth but after just a few guided attempts, he was quite confidently doing it himself.  Now he even manages to navigate the small little juicy treats, clasped firmly between his little angulated thumb and index finger, into his mouth.  He still won't pick the food/treats out of a bowl, but will happily take them when offered from my own hand or a flat, open surface like a food tray, etc.  Baby steps are just fine for now anyhow and although there are still some hopelessly out-of-place signs, there is also a definite improvement with signs like "crying" and "pig" now being displayed on Sam's forehead as opposed to on the side of his head. Like I said...baby steps :)

The Birthday Boy!

On Tuesday, 15th May, our little conqueror celebrated his third Smurfday (ala Kym-Maree - I've stolen it, but thank you xxx). As the messages streamed in from everywhere through all mediums, I realised just how many lives this little smurf has touched.

As always with Sam, celebrations are kept very low-key and while I would adore throwing Sam a lovely themed birthday party (Yes - even though it would sport way too many Lala's and Po's) it would more than likely be more for my beneift than Sam's. We'll wait it out another year and perhaps by this time next year Sam's sensory issues might have subdued a bit and a proper birthday party would be more enjoyable than stressful for Sam....those words do sound awfully familiar though. I'd like to think that, despite still been woken up at the crack of dawn for an OT session, Sam had a relatively pleasant day with visits from Aunty's Mandie and Cammy, not to mention a sweet haul of new toys. Fairly subconsciously, we've noticed that pretty much anything we buy lately in the way of a "toy" always has some or other educational/therapeutic element to it and so desperately wanted to buy something this time that was purely just for fun. The mission, however, was unsuccessful. The only thing "fun" we did give Sam was a really basic remote control train, to perhaps satisfy his OCD button-pressing fetish, but with a little boy who even jumps at the sound of velcro tearing the train just scared the living daylights out of him :)

Besides Sam turning three, not much else has changed in Smurfville. With the exception of two nights this passed week, Sam's nighttime sleeping (daytime naps aren't even worth a mention) is still largely disrupted and eratic and I don't expect it to improve anytime soon. Getting him to actually fall asleep is also still fairly challenging. When Sam was ill I couldn't resist but resort to walking him to sleep again but, when collecting another set of iBuprofen tabs (to ease the pain of shushing 13kg's to sleep), our local pharmacist subtley pushed a brochure across the counter for a local rehab clinic....making me think that perhaps it was time to rethink the whole thing...or find another pharmacy perhaps?

So, we're back to Sam going down in his cot, which is pushed flush up against our bed, while either Chris or myself lay next to him until he falls asleep....Sam that is, although sometimes Chris beats him to it. The thing is, while Chris is extremely disciplined in not interacting with Sam while they lie there, I cannot ignore him when he "talks" to me....which in turn leads to it taking sometimes 45 mins to an hour for Sam to fall asleep, especially when a little hand reaches over and tousles your hair or taps on your leg. Quite often though the tousling becomes tugging and is accompanied by a few slaps across the face or whichever other part of your body the smurf can get in contact with. This morning, after Sam slapped me a couple of times on the head, I moved my face out of his reach. Not to give up so easily (he is a conqueror of all things after all) Sam grabbed my hand and sort of threw it at my own head a couple of times, as if to say I don't mind who does the slapping...as long as there's slapping going on. It's so incredibly difficult not to laugh then.

I read an article recently about how important it is for moms/primary caregivers to take really good care of themselves, especially moms/caregivers of special needs children. It is suggested that you get as much sleep/rest as possible, eat healthy, take yourself to the doctor when necessary, etc. I found it quite entertaining really because if all those things were so easily achievable, would there be such a thing as an exhausted mom? I considered sending in my own article which would state that for quite some time I've survived on an average of 2-3 hours sleep a night (and not always in one go), medicate myself on whatever I can find lying around the house when sick and over the past week or so have consumed a diet predominantly of tea and biscuits and, as far as I can tell, I am still walking around....albeit a little shakily...hehehe. I'll keep you updated on the T&B diet as it's terribly convenient especially if Brampies is around, as he makes a cup of tea literally on the hour. It's just so easy to grab a cup of tea, (almost always) stick it in the microwave, grab a biccie, dunk it and of course, share it with Sam....fuel for me and entertainment for Sam all in one go. I mean, who really needs vegetables....protein...calcium...carbs...or clothes that fit....right?

At Sam's OT session this week we discussed the options available for getting Sam to sit and walk, including the use of a walker or gait trainer (pics below) :

Up until Tuesday, I really thought I had this whole "acceptance" thing down. Now I am really not so sure. Of course I know the statistics, the very large scale of development for our RTS children and even that a number of Sam's RTS siblings make use of walkers. But yet the thought of seeing Sam in one is very literally breaking my heart and it's difficult to even type this without wanting to just burst into tears. I just took it for granted that Sam would crawl and then walk, even if it's at his own pace, but both Sam's OT and PT feel that having a transition step from the one to the other would benefit Sam. Me? I am petrified that once Sam starts using the walker, he'll never stop. And it's especially frustrating that a year ago he was pulling himself up and coasting along the furniture...and now we're having to consider this.

I know that, like everything else, I'll get my head around this...and hopefully my heart too. We did research the cost of importing a gait-trainer from overseas (apparently the ones available in SA are just not as good) but were a little shocked when the prices hovered around R4 000-00. Thankfully, the PT that works with Sam's OT has one we could "borrow" for Sam for a while so by this time next week we should know if it's an option for Sam.

We've known for some time that Sam is going to have his foot operation round about three-and-a-half years old and often spoke about how challenging it was going to be keeping Sam off his feet for the six weeks that the pin stays in....I even remember saying once or twice that maybe it would be better if Sam hasn't started walking properly by then, purely to make that part of the recovery easier.  Now I sit and wonder if perhaps I have not, yet again, invited this particular challenge in....

Smurf Wars

Things have been somewhat hairy in Smurfville over the last few days. Sam seemed a littly more "fragile" than usual at the beginning of last week but I put it all down to his teething...not least supported by the fact that he sports two farely red and "thoroughly gnawed" thumbs lately...because them being angulated doesn't attract enough attention? By Wednesday there was definitely something else bugging Sam when we were back to the clinginess, mostly sleepless nights and nocturnal thrashing that Sam is prone to when something is ailing him. Even if I'd had the time to blog, the posts would have looked something like this :

Wednesday, 2nd May

HELP?



 Thursday, 3rd May

HELP!

Friday, 4th May

H E L P !!!!



The fourth was definitely not with us on Friday <<cringe>> Sorry, couldn't resist...especially because I only found out round 6pm why everyone was "May the Fourth be with you"ing all day.

In actual fact, when Chris let me know he was on his way home on Friday evening I sent him a text saying "Are you sure you don't want to rethink that?" No point in both of us going down, right?  So run while you can my friend! By Friday evening Sam's eyes were looking really puffy and his cheeks all flushed and somewhat swollen. Mmmm...I told Chris I was quite convinced Sam had sinusitis - had a little experience with that one myself you see, so I could almost "feel" how Sam "looked". 

The weekend was pretty much more of the same so come Monday, off we headed to the paediatrician who, after a thorough examination and usual vomitting that comes with Sam being weighed, said "Mmmm....Sam has a rather nasty sinusitis!" So another ten day course of antibiotics for Sam...the only antibiotic left that we haven't exhausted during the last three months. Sam seemed to have a much more comfortable night on Monday, but last night we were back to the smurfrobatics (nighttime thrashing), now accompanied by additional coughing coming from Meghan's bedroom. Sigh!

Ironically, Sam had his best ever physio session last Wednesday...all thanks to his iPad. It had worked for his previous OT session, so I suggested to Heidi we give it a try for physio as well and, with the exception of one or two moans from Sam when Heidi tried to push him a little, Sam did really well...as long as I kept the apps flowing. So being able to use Sam's iPad to entice/distract Sam with OT and PT respectively, has proven to be quite the added bonus. However, at this point, we are focusing predominantly on speech prompts and signing for speech therapy where bringing the iPad in would not really be beneficial. Usually this would not be a problem as Sam is quite relaxed and comfortable with speech therapy, but on Thursday Sam obviously felt he had to give us at least some therapy resistance for the week and so moaned and protested throughout the entire session. With physio having gone quite well again this morning, let's hope tomorrow's speech session is not going to follow last week's pattern.

That's roughly about where we are at the moment. Sam's Granny is coming for a visit from tomorrow until Monday, which is something to look forward to and other than having to go do a bit of a hunt for a birthday pressie for Tuesday, we have nothing else really exciting planned. Yes! Sam is three years old on Tuesday. Almost hard to believe...as is the fact that he now weighs a solid 13kg's (although I have no trouble convincing my aching arms and neck that he weighs that much). Exactly three years ago I was lying in hospital praying that I would carry Sam to 34 weeks, but that just didn't seem to be the plan for us :) 

Giving a lighthearted account of how things have been over the last week or so is quite refreshing and therapeutic...but this time last week lightheartedness was the last thing I had running through me. Disheartened would be far more accurate. We've dealt with it before and will no doubt deal with it again...aggressiveness. Just after his surgery in August, Sam became extremely aggressive and lashed out mostly at me and, with obviously feeling really crummy last week and not being able to communicate it to anyone, Sam resorted to some pretty aggressive (and mostly well-aimed) hitting and kicking. While I know not to take it as a personal attack, it doesn't always soften the blow to one's spirit. It's really only the second time we've dealt with this challenge and by Monday Sam was not only back to his usual affectionate self, but even seemed to be trying to make up for his behaviour last week by dishing out even more love and hugs than usual. When I allow my mind to delve into that dark place, I have to admit that it is something that I find quite frightening. I know, from occasional posts to the listserv or FB group, that behavioural issues as these RTS sweeties (and many special needs kids I would presume) grow older are not uncommon. Almost makes you wish there was a way to prepare yourself for it - but that would just be too easy, now wouldn't it? Still, perhaps trying on Meg's goalie kit might not be entirely unfruitful ;)

Yo-Yo-ing...care to join me?

I have been rapped across the knuckles by one or two people for not having updated Sam's blog recently, but the truth is there's really been nothing remotely blog-worthy to post about. And, yes, I know in the past this would not have prevented me from subjecting all-and-sundry to my senseless ramblings but we just seem to be caught in this yo-yo-ing time bubble which, I can only imagine, must be pretty tedious to have to read about.


The last two weeks have been filled with much of the usual same old-same old, with the exception of an additional joint-attention speech therapy session last week Tuesday, a follow-up visit to Sam's neurosurgeon on Wednesday and Meg's eleventh birthday yesterday.


So the joint-attention speech therapy went relatively well. Tanya was pleased to see that Sam remained engaged with Meg for the entire thirty minute session, which is quite something because quite often he flits from one activity to the other at regular thirty second intervals, nevermind thirty minutes. Meg just brings out an entirely different side to Sam, completely playful and just so utterly little-boyish as he tackles her and giggles hysterically - it's pure joy to watch. The only minor downside was that Meg, for some completely unexpected reason, was suddenly overcome with uncharacteristic shyness (possibly as a result of Tanya video recording the session) and did not "verbalise"as much with Sam as she does at home. For those of you who personally know Meg, this is quite unusual for a little girl who will quite randomly and without any ado break into song and dance in the middle of a restaurant or shopping centre, or demand that I waltz with her in a doctor's waiting room or something equally unreserved. Regardless, Tanya seemed satisfied that we are still moving in the right direction with Sam which is all we can ask for. About three days ago Sam started making a new sound, sort of like a car sound, and seems to be exploring more with what noises his mouth and tongue are capable of producing.


The follow-up with Sam's neurosurgeon was relatively unremarkable. The consultation started out relaxed enough with Sam banging happily on the desk and pointing out to me every chair he could catch sight of (have I mentioned that Sam has an almost impossible chair fetish) but the second APF moved in closer for an actual examination, Sam initiated his defence mode (arm in "shielding" position across his chest and face) which made APF's task a little more difficult. After performing what examination he could around Sam's defensiveness, Prof F said that he felt all was still going well with Sam spinal cord and reflexes, etc. He did remind me of the exceptionally rare, but still note-worthy, chance that the spinal cord can re-tether when it is repaired at such a young age but felt that, as it would present with the same symptoms it did in the first place, it would hardly go unnoticed. We did agree that an MRI conveniently coupled with any upcoming surgeries in the next year or so would not be a complete waste of time.


Sam's general wellbeing over the last two weeks has been all over the place. Something positive or encouraging happens and I make a mental note to blog about it but before I get a chance to hit the keyboard, something less positive and perhaps a little worrying happens and then I kinda lose the spirit of mentioning the "good" thing because you sort of ask yourself "What's the point? I am just going to have to mention the not-so-great thing afterwards!"


For example : About a week ago, just out of the blue, I decided to try Sam on some Stage 3 baby food and low-and-behold without a single gag or tiny bit of resistance, he polished the food off. I gave the Stage 3 food for another day or two and he carried on eating it without any hesitation. In the meantime, he's developed this really bad habit of insisting on eating from my plate, without obviously being able to understand that it's not always something he'll tolerate. But the one day I had a PB&J sarmie, Sam gestured pointedly at my sarmie so I gave him a bite...and another bite...and another bite and eventually had to make him his own sarmie, which he ate about ⅔ of. The next evening he had a bite of my McD's burger, patty and all, and swallowed quite easily. I was too scared to celebrate too loudly because we all know my friend Murph by now...and, just as expected, by Monday Sam was not only no longer tolerating the Stage 3 baby food anymore, but even gagging on his normal ultra-pureed food. And the reason? Sam is in the throws of coming down with something nasty again. On Saturday night he battled with a snotty nose and problems swallowing while he was asleep, on Monday morning he woke up with a temp just under 38 ºc and by yesterday his tonsils were looking quite remarkably sago-pudding-like (Chris's creative description) with the left one sporting about three of those little pus follicles already.


I decided not to rush immediately to the doc, because I already know what course of action he's going to advise...but instead am just praying frantically that somehow that darn Zithromax will kick-in or kick-butt against whatever relentless viral thing it is that is wreaking havoc on Sam's immune system. I am starting to worry that something is being overlooked...something serious, because I just find it quite challenging to accept that Sam's immune system is THAT compromised that it cannot rid itself of this virus. I do, at the very least, weekly urine analysis' on Sam's urine and realised yesterday that the last "normal" results were at the end of November last year. Unfortunately, come tomorrow, my holding out for the sake of an answered prayer will begin to teeter dangerously on the side of negligence and I will have to make that appointment. But still a few good praying hours left.....care to join me?

Love him so much that it sometimes feels like a physical pain in my chest - so wish I could make him healthy...that's all....just healthy.  

What Special Needs Parents want from Doctors and Hospitals

"An appreciation of our child as something more than a cost-effectiveness problem.



Healthy or ill, rallying or near death, our child is a unique individual with strengths and gifts you may never know about -- not just a bag of organs using up a bed.


Cooperation, not combat.



Doctors and hospitals should be fighting with us against what's ailing our child, not against us to circumvent our parenting rights: Be our ally, not our enemy.


More options, not fewer.



If we seek alternative treatments, it's not because we're fools or dreamers, but because you've stopped offering creative and hope-inspiring options; show us you're not tied down by the-way-it's-always-done, and we'll listen.


Respect for the power of love.



Our love for our child endures past diagnosis, past illness, past hospitalization and treatment and futility and brain death -- our love for our child has no limits. Don't be surprised if we put more faith in that love than in you.


An understanding of the preciousness of one more hour, one more day.



Our memories may soon be all we have of our beloved child. We want as many as we can get. One more birthday, one more book read together, one more smile -- these are not small things.


A little respect.



We may not have gone to medical school, but we're the world's #1 expert on our child. Treat us like a peer, not like a roadblock in your way.


Get this: You could be wrong!



Doctors make mistakes. Frequently. Not little mistakes. Big ones. Chances are, we've had doctors underestimate, misinterpret, or mistreat our children before. We're still willing to listen and work with you. But take off that Superman cape before you talk to us."

The above is an excerpt I borrowed from Terri Mauro off one of her recent  specialchildren.about.com posts following the outrage caused by the atrociously unjust manner in which Amelia "Mia" Rivera's life threatening need for a kidney transplant was dismissed due to her mental disability.

The subject of doctors and their compassion and care (or lack thereof) of patients, especially special needs children, is probably one of my most passionate and infuriating "sensitivities" and I have "sensitivities" by the truckload so that's really saying something.

Since Sam's arrival into our lives we've had to, as with all SN families, encounter too many doctors, specialists, nurses and the likes. The reason for having had so many is not purely because that's how many medical caregivers Sam has needed but also largely due to not always being able to find a caregiver who is not only experienced and clued-up in his/her particular field, but also compassionate, caring, supportive and assertive yet humble enough to lead you confidently towards a particular treatment/medication, etc without stripping you of your power to make that final decision at your discretion. As I've mentioned many times before, we have been blessed to find several specialists to take care of Sam who genuinely are all of these wonderful things, but there have just been too many who either intentionally dismiss several of Sam's issues relating to his wellbeing either because of unjustified ego's or complete indifference to all of their patients.  Or  those who unintentionally dismiss him possibly because they feel his mental disability does not allow him to experience pain/discomfort/fear the same way we do? While I struggle to hold the second group completely accountable for their actions, the first group I believe are bordering on unforgivable.

I have sometimes wondered if perhaps my less-than-assertive manner of speaking and only-slightly-taller-than-a-smurf height might have something to do with why some doctors don't seem to pay much attention to my suggestions/queries or take me seriously because, in all fairness, it is not only doctors who sometimes overlook (pardon the pun) what I have to say. But then I will occasionally notice other "normal" patients being treated the same and it is, in a warped kind of way, reassuring that it isn't just me and/or Sam. There can surely only be two reasons why any one person decides to choose a vocation in medical caregiving : a pure and unconditional love of caring for others and their wellbeing or a pure and unconditional love of money. And only one of those reasons belong to the doctors you want treating your child. The whole situation is frustrating beyond, largely because it will never change. I cannot even begin to imagine the emotional anguish Amelia Rivera's mother must have endured when being told that her precious daughter's life had been rendered "second rate" just because of the different and unique way in which her little brain functions.

I always have and always will continue to make a point of sincerely thanking those doctors/specialists treating Sam who are quite obviously not just driven by the money, and affording them the praise and recognition they righteously deserve.

A possible tonsillectomy and potential head-bashing

Sam did not have a great night on Sunday night...continued fever despite the suppository, another vomit-episode and by Monday morning he was so dehydrated that his tongue was virtually stuck to the side of his mouth. First thing on Monday morning we went off to our GP hoping it was not too serious but after examining Sam and being a little concerned about how quickly he'd become dehydrated, he phoned Dr S who instructed us to take Sam straight back to the ward. Dr S gave Sam a quick once-over and said he definitely needed a drip, if we could manage one as both wrists and his left ankle had already been punctured and bruised from the surgery. Dr S did manage an initial success with Sam's left wrist but within seconds the vein collapsed. After much screaming and gagging, he eventually got the drip into Sam's right leg and also drew some blood for testing as well.

Once Sam was settled back in the ward he had a bottle, a dose of Rocephin and a dose of Perfalgon and then took a four hour long nap. He was thoroughly exhausted. Dr S advised that his blood tests had come back clean of any "funnies" and that his feel was that with Sam's throat having already been a little irritated before the surgery, intubating him could possibly have brought on a full-on infection. On Tuesday afternoon we were discharged again, after another dose of Rocephin and a seemingly more comfortable smurf. We continued our post-op surgery regime at home and although Sam's wound seemed to be doing okay (despite needing a dressing change on Thursday after a particularly explosive poo nappy) by Thursday night Sam's nose was sounding really congested again and most of the night was disrupted by his choking/gagging/apnoeaíng episodes. Sam was originally supposed to see his ENT last Friday already but with him only having been discharged on the Tuesday with regular examinations by Dr S (who confirmed that his grommets were looking great) I had originally intended to give the kid a break from Vincent Pallotti and only make the follow-up for the end of this week but after Thursday night's troubles, managed an appointment for this morning. And thank goodness too! So far every nighttime has been plagued with breathing difficulties (including a mid-sleep vomit on Saturday night) and definite discomfort when swallowing.

Sam's ENT confirmed this morning that Sam has quite a nasty dose of tonsillitis, leaving him with rather enlarged tonsils, and also feels that it is more than likely as a result of being intubated while his immune system was already a little compromised. He's put Sam on a course of Augmentyn (which will be totally awesome on his already drug-riddled tummy) but warned that we could be looking at a tonsillectomy soon!! Really??? Arrrrggghhhh!!!  I cannot for the life of me remember when last Sam was even remotely healthy....he started with the croup and viral infections round October/November at least (and that's not including all the ear troubles before that) and we are mid-February now. It is so unbelievably frustrating - I left the ENT's rooms with the usual "thank you's" and what-nots but honestly felt like going around the corner and bashing my head into the nearest wall.... :(

Bathing Bloopers

I never imagined bathtime could be such an incredible source of entertainment. On Friday evening we tried out Plan A which was that I would put Sam in the bath with me then, once Sam had enjoyed some bathtime playing and had been washed, Chris would take him out and dress him. Within minutes I was silently  "Whoop Whooping" to myself as, after not a moment's hesitation to get into the bath, Sam lay back, super-relaxed kicking and sing-songing away to himself while he played with his foam numbers. Ahh...the sweet joy of success. And then Chris came to take Sam out to dry and dress him and Sam screamed BLUE murder....literally - he turned blue from all his screaming. So...on to Plan B.

On Saturday evening Chris got into the bath with Sam. Although taking Sam out at the end of the bath was pretty uneventful, Sam refused to sit down in the water. So Chris ended up having to hold him upright while I washed him...which is just about as effective and successful as Chris simply holding him over the bath like we found ourselves doing last week.

On to Plan C : last night we tried Plan A again with a slight modification. Instead of Chris taking Sam out of the bath and, obviously the problem, away from me...I would try and get both Sam and I out of the bath at the same time. It would of course prove a logistical nightmare with me having to hold onto Sam while lifting us both out of the bath. Still, I thought it was worth a shot and had the bath been a little shallower, Sam been a little smaller, me been a little stronger and ever-so-slightly more like Mr Fantastic from the Fantastic Four, Plan C could well have worked. Unfortunately it was just plain ol' me, Sam and our thirty-something year old, metre deep bath (well at least that's what it felt like). So after an almost dislocated shoulder and knee, it was decided that Plan C is not do-able either.

If it wasn't so frustrating it would be unbelievably hilarious! What am I saying? It's still hilarious! Especially last night's episode. So...on to Plan D tonight which is a plain and simple shower for me and Sam. We've done it before, we know it works and, although it means that Sam has to skip out on his playtime in the bath, it's the best we can do for now. In any case, if all goes well and Sam's surgery goes ahead on Friday we'll be doing about two weeks of "bed baths" regardless of sensory issues. There's always a Plan E....

Which in our case would be the BAD method! Just kidding!

Speaking of surgery...in an already unsure mind as to whether Sam will be good to go for Friday because of his fairly congested nose and up-and-down temp again over the past couple of days (high enough for me to have to give him some meds on Saturday and yesterday) Meg, unintentionally of course, has us even more concerned as she is in bed today with a stomach bug. Keeping her mostly confined to her bedroom is not proving to be too much of a challenge as she's feeling quite miserable and is quite happy to just lie in her bed...so my plan to tape up her doorway and feed her her meals from outside the house, through her bedroom window might not be necessary after all. Which is really quite a pity as I imagine it would have caused quite a stir with the neighbours.

In closing, some random pics (some already seen by my FB friends) :

Who needs those R299 "crawling buddies" from Toys R Us when you have a Meg

(when she's healthy of course)