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*)

Smurf @ Pooh Caves

Last weekend Sam's Ouma and Oupa arranged a weekend getaway for the family at Pooh Caves (aka Guano Caves) to celebrate their 70th birthdays.  Making plans so far in advance is usually a bit of a gamble with little smurf but we were blessed not only with a healthy little boy but some pretty stunning weather too. Samuel loved being surrounded by his cousins and of course, absolutely adored the warm water pools.  This, together with the relaxed surroundings and great company, made for a pretty awesome weekend :)

Sam sharing his iPad (although sometimes a little reluctantly) with cousins Dirk and Kayla who both desperately wanted to have a go at the iPad many a time but were super obedient of their moms' instructions about not touching unless invited to do so - kudo's to moms Deirdre and Cindy ;)  Kayla was too adorable with Sam, who loved having her read to him (the most charming fairytale concocted from a Learning about Numbers book...and in English for Sam's benefit) and even quite happily allowed Kayla to play with his hands and hair. I found her questions about Sam's speech and thumbs so precious and even more endearing, her reassurances to me that "Sammy" IS going to walk AND talk. 

The "tent house" we stayed in which, quite surprisingly, worked out just fine with Sam as it had carpeted floors so he could at least have a crawl around every now and again.

Sam suddenly found himself cured of his on-again-off-again aversion to balls and thoroughly enjoyed throwing Dirk's ball around. Aunty Deirdre and Uncle Hendrik giving mom and dad a very-seldom enjoyed chance to sit down and eat together xxx

Of course all the waterbabies could think about was hitting pools.

And they weren't the only ones....Sam in blissful happiness

A quick break to attend to some sensory-seeking munching...

...and his off again.

For the first time ever I felt the stabbing heartache of having Sam push me away...LOL! The first pool we swam in was fairly deep and I could just about hold my head above the water while on my tippy toes which didn't give me much space to hold Sam. So it was up to Daddy to see to Sam in the pool and Sam adored being bounced around and swished through the water. When I tried to take him a while later he point blank refused to come to me and even pushed me away on more than one occasion when I even just came near, in case I had any intentions of taking him.  I am obviously just not as much fun as his dad, well in the pool at least. Oucherooni! Sniff Sniff!

Braving, but not loving, being on his tummy. 

Sam trying to make friends with two random little boys

That look says it all...Fun! Fun! Fun!

Goofy Smurf!

Unfortunately we didn't keep the camera with us all of the time so missed out on loads of pics of the entire family and all Sam's cousins...and most importantly, the birthday couple.  Next time!

Dankie Ouma and Oupa vir 'n baie lekker naweek xxx

Sleep Wars Continue

The title really sort of wraps it all up, doesn't it? Of course after I jinxed the good night Sam had last Wednesday by blogging about it on Thursday, he's been stirring every evening round 12:30ish...sometimes thrashes around for a coupla minutes...sometimes for a coupla hours...and then falls asleep again after that, still with lots of jerky twitches.  Last night Sam woke the usual time, screamed as if he was being barbarically tortured for an hour or so and then drifted off again.  Perhaps its time to accept and come to terms with the reality that this is Sam's new sleep pattern and find a way to adapt to it.  Don't ask me how one possibly does that...any idea's?

Both occupational therapy yesterday and physiotherapy this morning were a treat though.  Yesterday Sam's OT was trying to encourage him to play with playdough which he kept refusing to touch, although he was quite happy watching her cut out the little burger-and-fries shapes. The little french fry cutter was adorable and of course both Christa and I kept remarking on the little "chips" she was making.  Sam looked at Christa, looked at the teeny playdough shapes, seemed to think "What? Chips? Why didn't you say so..." and promptly tried to put one in his mouth! After I've figured out how to adapt to the new sleep pattern, going to find me an edible playdough recipe...only way we'll get Sam to touch the stuff. 

Strangely enough Sam's been quite relaxed at touching new textures during his other therapies. He's a real character, isn't he? Is joyfully "verbal" and eager to show off his signing during physio and OT, but refuses to do either during speech therapy.  He'll happily mess with kiddies foam on the mirror at speech therapy or spend ages taking foam animals out of a container of water, placing on a mirror and removing again during physiotherapy but refuses any contact with textures during occupational therapy.  I sometimes think we completely underestimate that little mind.

Shopping trips have proven a little easier to manage lately...well up until yesterday that was.  When taking Sam for a walk, I'd started strapping the iPod to his pram with a little velcro speaker attached, which he seemed to love and was quite content to listen happily to He's Got The Whole World in His Hands over and and...and over (beats my squawky rendition which is all we had before).  So when needing to go to the shops last week I thought what the heck, let's give it a shot.  Other than getting a few odd stares at Sam's "dancing" (in other words, serious happy-flapping) it proved to be an awesome hit and we even managed an extremely painful (for us that is) two-hour long hunt through Canal Walk over the weekend.  But in Smurfville all good things come to an end...far too quickly. And yesterday the iPod decided to go on the blink. Disaster. Not only for the shopping benefits, but also because thats the only way we manage Sam through the streching part of his physiotherapy.  Luckily Heidi worked super-quick through Sam's stretching this morning and had finished just as he started seriously protesting.  So...after I've discovered awesomely successful ways of making Sam's new sleep pattern work for us and found a delicious and safe recipe for edible playdough...I am going to design a sensory friendly pram/buggey (with regards to colour, depth and position of the seat, height, etc) with built-in speakers around the frame where one can simply plug in your iPod.  Think it'll work?

But before I get started on the above, we are hopefully headed off for a weekend away to celebrate Sam's Ouma and Oupa's birthdays this coming Friday.  We seemed all good to go until last night when Meghan started coughing and Sam woke up sounding disappointingly croupy this morning.  Just four nights of germ-evasion...that's all we need. Headed off to the shops this afternoon, devastatingly iPod-less, to stock up on immune boosters and the likes.  Holding (angulated) thumbs x

Smurfville under Construction

Four weeks ago, on the 6th September, Samuel acquired a lovely little niece named Mia.  (The fact that Luke thought 38 was as good an age as any to make me a grandmother *ouch* is a whole other blog on it's own).  I was quite eager to see how Sam would react to a real baby so close up, as he gets super excited when he spots other "babies" (which is roughly any child between 0months - 10years old for Sam).  With Mia still being so tiny and not providing Sam with much entertainment value, he seemed generally disinterested. And then, one afternoon, as we all climbed into the car, Mia cried.  And then Sam cried.  And then Sam screeched in sheer distress.  He was thoroughly and completey upset.  He's developed a tendency to start whimpering himself whenever he sees another baby/child crying on tv but has never quite become so upset.  If it wasn't so earth-shatteringly painful on the ears, it would've been kinda cute :)

Mia

So we've said our final goodbye's to 20 Hillary Street. The place I crashed every evening for 9 weeks after spending hours on end at the NICU when Sam was born.  The home that saw Sam cast his NG tube aside and finish his first bottle, that saw him sit and and crawl for the first time, where he recovered from his first four surgeries and in return was showered with litre upon litre of v-word secretions. Yuggghhhh! A house ain't a home till its received the eau de puke treatment, luckily Sam's already taken care of that in the new house.

 

Where Sam's passion for slides was born :)

Possibly the tallest tree in the neighbourhood. Stood more than 20 metres high and was easily visible way before we even neared our house, even for Sam. Proved invaluable on Sam's much-loved car trips as a marker that he could relax as we were near home.

We almost said our final goodbye's to the Ferocious Beast as well as the new owners surprised us (most pleasantly) by saying they'd be more than happy to have Max stay on with them. This was the plan up until last week and then the thought of having to leave him without even giving him a chance in the new place, somewhat tiny as it is, just seemed like giving up too quickly. So Max came across on Saturday and, although I am not sure how easily Max is adapting, Sam is loving having Max there to occasionally chat to through the gate while softly rubbing Max's fur.  Being the awesome people that they are, we've been assured that Max still has a home with the new owners if things don't work out here with him. 

So, since our dismal v-wording first attempt with Melatonin, we seem to have found a workable gameplan for Sam's sleeping for the time being, which is still all over the place.  There were two fantastic nights, one when Sam woke for the first time after 2am and the other after 5am, but the rest still filled with lots of disturbances and restlessness happening anything from every 2 hours to every 20 minutes.  The general pattern is that Sam falls asleep pretty much as (Sam's) normal.  But then within an hour the trouble starts either with him seeming to have an uncontrollably itchy skin mostly on his tummy, back and legs and/or rather violent twitches in his legs and very occasionally, in his arms.  The itchy skin is obviously because of his eczema but the twitchy legs is the tricky part. Even when Sam resorts to that horrid spinning, it starts with his legs and that's where the core of the spinning remains...with him rocking his body from side-to-side with his legs. After another trip to the doc, it has been agreed that Sam almost certainly has Restless Leg Syndrome I do vaguely remember this subject being discussed either on the RTS listserv or the FB group recently, indicating that there are other RTS sweeties struggling with RLS as well, sort of confirming the diagnosis.  Apparently RLS in adults is treated with the same medication as used by Parkinsons Disease sufferers but to Dr B's knowledge there's not much that can be done about paediatric RLS. Dr B also noted that on both Sam's scars from the TSC surgery and the removal of his right testicle, there's a section where the scar tissue has become tethered to the deep tissue underneath and thinks that these three issues, together with Sam's usual SPD challenges, are all contributing to his sleeplessness.  While there's unfortunately no remedy at this point for the RLS and problematic scars, we can at least treat the eczema with some Aterax for a while. A few nights ago I tried the Melatonin again and so far we've had no v-wording episodes and last night added the Aterax to the mix and, with the exception of waking twice for mere moments, Sam slept through till 7am this morning. Celebrations!!!  Of course the fact that I have just blogged about it will almost certainly guarantee that tonight will not be as successful *sigh*   On the upside, I don't think my body can handle that much sleep anymore...the day after Sam's straight sleep till 5am, I felt absolutely lame all over and really rather dopey...how I'd expect to feel after having had no sleep instead.  So it's really for my own good to have Sam slowly phase the good nights in, right? As long as I keep telling myself that, we'll be okay :-)

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 :)

News from Smurville

Poor neglected ol' blog.  Just haven't had much time to sit down and attend to posting...and I don't really fancy trying to rush through an entry, because then you land up with silly mistakes like typing "Smurville"! The very first word of my last blog post (and intentionally misspelt above).

As mentioned last post, our house is (now officially) sold so, up until last Friday, we were spending most evenings frantically viewing (and often re-viewing) the rather limited available houses for sale.  We have eventually submitted an offer on a place which has subsequently been accepted by the seller and are now awaiting mortgage bond approval from the bank.  The "new" house is much smaller than our current one particularly the garden but it is definitely more Sam-friendly being all on one level and compact enough for me to be able to know whereabout in the house Sam is at any given time. It's sure going to be interesting to see how Sam adjusts to a whole new home when it took him a seemingly-endless amount of time to simply adjust to a new cot last year. 

We've been battling for some time with Sam's sleeping at night as he spends most of the time thrashing around and twisting himself from side-to-side...sometimes for hours on end and often so aggressively that he lands up hurting himself.  Fairly convinced that it was sensory related as with many of Sam's issues, I tried giving him a last brushing and good ten minutes swinging time literally just before his bedtime (which often makes him quite sleepy) but it didn't seem to make much difference. Then to aggravate matters, Sam came down with an upper respiratory infection last week so we had a good couple of nights where sleeping for all three of us was limited to no more than three hours. Off we went to Sam's paed on Thursday.  We were discussing Sam's ever-present rash on his tummy for which we've tried almost every cream by now.  I asked howcome neither of Sam's anti-histamine's help with the rash, being his Zyrtec (allergies) and Cipla-Actin (appetite enhancer) which in turn got us to talking about the side-effects of the Cipla-Actin....being either sedatory effects or....HYPERACTIVITY!

*Light Bulb moment*

Mmmm...so giving Sam his Cipla-Actin at about 6pm with his supper might not be a super-smart idea? Apparently not! Dr B suggested I try giving it in the morning, which I did the next day but Sam was still just as restless as every other night, although with him being ill I hadn't held much hope. So on Saturday morning I thought "What the heck...let's veto the Cipla-Actin all together!" And would you believe, URTI or no URTI, Sam slept peacefully for the next few nights.  The only hiccup we had was yesterday evening when Sam threw a mighty tantrum when having to get out of the bath....which lead to some mighty screaming...which lead to some mighty vomiting! By the time Sam went to bed, that little tummy valve was still tantruming all on its own...so the remainder of his supper came out just as he fell asleep. I'm definitely going to persevere without the Cipla-Actin and just find other ways of keeping Sam's eating habits up as he has generally had an incredibly healthy appetite for a while now.  Even being sick last week didn't change his appetite, which is usually the first sign that something's up with him. 

Although I was a little dubious about keeping Sam on the Zithromax antiobiotic for a six-month period, I have to admit that it did definitely make quite a healthy difference taking into consideration how many viral infections, etc Sam was picking up prior to it. So after some discussion with Dr B we've decided to continue for another six months as opting to stop the antibiotic smack-bang in the middle of Winter might also not be too smart.

Otherwise all is pretty much the same with smurf.  No mindblowing accomplishments but no mindnumbing regressions either...which is quite okay for now.  Chris and I have had to deal with some rather disheartening realisations over the past couple of weeks.  On my side, I hadn't realised how sheltered I've become from having to share our family's challenges with "outsiders" as most of mine and Sam's social interaction revolves around Sam's therapists and doctors, my wonderfully supportive and accepting family and my very close-knit little circle of friends.  So, having to explain, some times several times over, to the same person why a particular house would not work for Sam because it was too cold, too warm, too bright, too damp, too close to a noisy road, too far from easy access to highways in case of emergencies and, the favourite, why we just couldn't manage that extra R100,000 or R200,000 because our little smurf is a pretty awesome but costly investment all on his own...did become slightly exhausting.  Chris shared a while ago that he sometimes doubts the probably good-intentioned sentiments of some, who believe they appreciate the challenges of having a differently-abled child but actually really don't...so it was quite a beneficial experience being reminded of that again.  

Hallo World :)

Smurville has been somewhat busy over the last couple of weeks.  We took a short trip to Pearly Beach to spend a few days with Granny...

M & C - totally fed up with being couped up in the car...although their being couped up was largely due to the number of bags they dragged along filled with toys and Build-a-Bear clothes. 

Greeted by Pearly Beach with an awesomely warm and sunny afternoon...

...which means we were barely unpacked before we had to take a walk to the beach. Sam has developed an issue with having socks on his feet. Yes! In the middle of Winter.  So he kept M & C busy by randomly and sneakily throwing both his socks and shoes out the back of the pram.

Such a treat in Winter. And apparently the water was not THAT cold. Barely tolerating the cold sea water in the Summer, I simply took the girls' word for it.

Sam so not impressed with having to tolerate both sand and cold. Bet you he was regretting shedding those socks and shoes!

Day 2 unfortunately stayed overcast and rainy - but that wasn't enough to keep the girls from the beach.

Sam snug and safe behind his wind shield, listening to the iPod which was obviously playing Two Dickie Birds

Shortly after returning we, half uncertainly, signed a mandate to put our house on the market and then enjoyed the last few days of the school holidays with a lovely visit from Sam's RTS brother Matt and his family, a couple of playdates for Meg and just some at-home time....

...which Sam adored as having Meg at home all day meant fun games like Hoola-Hooping with his big sis :)

...lazy morning lie-ins with Dad just chilling and watching tv...

...and a new haircut!

Silly Giggley Smurf

Monday morning's back-to-school was a bit tough for Sam as he'd had three glorious weeks of sleeping in till after 8am most mornings but he's sure to get back into the normal early morning routine soon...just not so sure I will...LOL! 

On Tuesday Sam's orthopaed advised that, after deliberating with his colleagues, it has been decided that Sam no longer needs to have surgery on his left foot.  Apparently there is one type of epiphyseal bracket which can rectify itself with time and it appears as though that's the type Sam has. We celebrated (again) like a bunch of crazy loons.  It's almost hard to believe when I think back to what that little foot looked like when Sam was born. It was so severely turned upwards and inwards that I could barely imagine him ever being able to walk on it.  Now there are times when Sam is weightbearing when it's almost impossible to see that there's something different with that little foot....without the help of any strapping, plastering or even orthotic boots. 

Earlier this evening we accepted an offer on our home, rendering it (pending mortgage approval for the buyer) effectively sold.  We're a little shocked that it happened so quickly.  We're a little sad at the thought of saying goodbye to the place we've called home for so long. But it is what it is.  A new challenge.  We can't have life getting all boring and predictable on us, now can we?

We had a bit of a heartsore moment last week when Sam and I had been sitting on the couch sharing (as Sam insists with anything he can see me eating) my bread-and-butter pudding. Once the bowl was almost empty, Sam gingerly took the spoon and looked as if he was about to lift it to his mouth.  Brampies and I jumped up and down with excitement. Sam does NOT touch his food or bottle or anything remotely digestible.  But instead of lifting the spoon to his mouth, Sam's hand went completely over his head and dumped the contents of the spoon down his back. The second attempt delivered a squelchey dollop of pudding in his neck.  At first we laughed. Then the realisation that this precious little boy, try as he might, could not navigate the spoon to his mouth hit me like a punch in the face and I remembered a particularly awful joke many of the boys delighted in telling when I was still in school.  It was not a good moment.  I discussed the incident with Sam's OT at yesterday morning's session as well as Sam not being able to articulate signs that effect his face. It seems as if Sam's spatial perception is just completely out of whack and we need to work more aggressively on developing that fine motor planning. 

That's the last two weeks in a nutshell.  As far as other sensory issues go :  hairdryers are back in - as long as they're not being used on Sam, vacuum's are tolerable again - as long as I am not the one doing the vacuuming, the handheld food pureer is back in - a huge Yay! for our wallets but what a massive loss to Woollies.  The sound of the cat meowing on the Zoo iPad app is out, Lala singing "Rabbit. Rabbit" on the Teletubby nightime dvd is a MASSIVE out and crawling over mini-obstacles in physio (which Sam could do without a blink of an eye up until last week) is now a definite out! And when I say "out" I mean that it makes Sam bawl as if he's quite possibly in pain. Like I said...no boring or predictable...

 

The Inaugural World RTS Day

 Tuesday, 3rd July 2012, sees the very first World RTS Day…an initiative orchestrated by an Australian dad in the hope of not only raising awareness of Rubinstein-Taybi Syndrome (RTS), but also the possibility of bringing more RTS families together across the world.


Rubinstein-Taybi Syndrome was first diagnosed 49 years ago by Drs Jack Rubinstein and Hooshang Taybi and there have been more than 750 recorded cases of RTS since then with an approximate statistic that 1 in every 100 000 - 300 000 babies are born with the syndrome. RTS at a glance is characterised by a specific set of physical features, being broad and/or angulated thumbs and/or first toes, short stature, downward slanting eyes, highly-arched palate, red flat birthmark on forehead, hyperextensible joints, excessive hairiness and, almost always, undescended testes in males. Some of the related medical conditions are feeding difficulties, eye abnormalities, chronic reflux, chronic constipation, heart and kidney anomalies, respiratory problems, seizures, a tethered spinal cord, dislocating kneecaps and/or elbows, vertebral and orthopaedic abnormalities, susceptibility to tumours and developmental/neurological disabilities effecting, amongst others, speech and mobility. As there are no blood tests available in South Africa to confirm RTS, a clinical diagnosis is made based upon these features/conditions.

Our son, Samuel, was born two month’s prematurely on 15th May 2009. Apart from being in severe respiratory distress, Sam had several unrecognised “abnormalities”. Amidst the daunting task of stabilising Sam, our paediatrician immediately sought advice from a genetics professor who, less than twenty-four hours later, diagnosed Sam with Rubinstein-Taybi Syndrome. At the time we never realised how fortunate we were to have had such an early diagnosis as many children born with RTS are often misdiagnosed or not diagnosed at all and having a confirmed diagnosis so soon meant that Sam’s paediatrician could immediately start checking for the conditions related to the syndrome, eg. heart and kidney defects, etc. Unfortunately though, Sam’s medical team had no actual experience with the syndrome, having just heard of it for the first time, so their information regarding RTS was derived purely from the details provided by the genetics professor and medical papers published on RTS which information largely corresponded with what we ourselves sourced off the internet which basically declared that our Samuel would be mentally retarded to the point of being uneducable, would more than likely never speak and achieve milestones like walking and potty-training several years later than his peers, not to mention the related medical conditions mentioned above. We spent the nine weeks that Sam remained in NICU preparing for the worst but hoping for the best while continuing to devour every bit of information we could on RTS. Somewhere along our cyber travels we happened upon a global RTS group who corresponded daily through a listserv, to which we instantly subscribed, and just weeks later were contacted by another RTS family living in Cape Town. The joy of finding someone who could share information and advice with a mere phone call or sms was invaluable and a few weeks after Sam was released from NICU we went along to meet Sam’s RTS sibling, Matt (who was just about to turn 3yrs old), for the first time. You can imagine our delight when we came face-to-face with a precious little boy who could walk, interact and already had an extensive sign language vocabulary.

Of course by this time we’d been spending ample time on the RTS listserv and had been in regular contact with Matt’s parents, Jacqui and Lloyd, so we already knew that while there were certainly many challenges facing children born with RTS, it was not quite the doom-and-gloom outcome one anticipated when sourcing all your information from the internet and medical papers. With RTS development and medical conditions can vary considerably from child-to-child and even though, at 3yrs old, Sam is nowhere near to being able to walk nor communicate verbally, his ability to grasp concepts we thought he might only achieve much later regularly leaves us awestruck. By the age of two Sam not only recognised all numbers from 1 to 10, he could actually select a set of numbers in the correct order and is now well on his way to mastering numbers 11-20, knows a number of shapes already and is a pro iPadder. Sam’s receptive language is brilliant, he understands everything you say and can follow instructions and even though he cannot yet express himself verbally, Sam knows at least 20 hand signs already and tries desperately to communicate them to the best of his ability. Sam is preciously loving and affectionate, has a charming sense of humour and, like all children with RTS, smiles with his whole being…not just his uniquely sculptured little face, capturing your heart at a glance…possibly why they’re endearingly referred to by their extended family as “RTS Sweeties’.

To date, apart from Matt’s family, we have only ever met one other RTS family (also from Cape Town), although are aware of approximately another five or six families in South Africa. It will be an immense celebration and success if, with only this one day dedicated to raising awareness of the syndrome, we are able to welcome just one more family to our little RTS group in South Africa or be instrumental in providing just one newly diagnosed RTS family with the reassurance and comfort that comes with having a doctor who, instead of starting your caregiving relationship with “Well, I haven’t really heard of RTS, but…”, says “Ah yes, Rubinstein-Taybi Syndrome! Well here is our plan of action with regards to what we need to watch out for and, most importantly, what we have to look forward to along this path….!” You can read more about Rubinstein-Taybi Syndrome on the global RTS website http://www.rubinstein-taybi.org/ or the SA website http://rts-southafrica.weebly.com/  and more about the very first Word RTS Day on http://www.worldrtsday.org/