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

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

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

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

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

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

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

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

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

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

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

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

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

Learner Drivers

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

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

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

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

Sammy and Oupa

Early Morning Grins

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

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

Sammy Singing a Lovely Song

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

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

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

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

Aunty Marili and Sam's friend Antoni xxx

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

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

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

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

Need I say more? 

xxx

Sam performing Twinkle Twinkle Little Star

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

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

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

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?

Bye Bye Charity Bond...Bye Bye Now

Okay, so let's start off with the bad news (not that there's any particularly good news to compensate, but maybe I'll think of something before the end of the post) - we have had to give up our hope of organising a charity bond for RTS to ride in the March 2012 Cape Argus Cycle Tour as we needed a minimum of ten riders to participate. Apart from our original aim, which was to raise awareness of RTS, I was hoping to use any monies which may have been  donated to put towards trying to organise our own little RTS South Africa conference some time next year. So, I am a little disappointed but also conscious of the fact that perhaps I should have tried to get the group together a little sooner. Chris and I will still ride, in whatever get-up we agree on by then (we are both leaning towards a Smurf theme) and will then look to perhaps a more successful attempt for the 2013 Argus...now if that isn't enough notice, then I just don't know :)

On Saturday we got to share in the birthday celebrations for both Sam's RTS brother Matt's birthday and Matt's equally adorable baby brother, Nic. It was great catching up with our little RTS family and seeing in person how much all the little kiddies have grown and progressed. I hope we get to do it again soon. Here are a few pics from the party, but there's a couple more on my FB page :

 

Sam and his RTS sister, Peyton, with their beautiful big sisters

Loved this one of the three RTS sweeties...Sam looking at Matt look at Peyton

Peyton with her Dad

and Sam with his Dad

The two girls, Tayla and Meg, just chilling. These two have become such good friends in such a short period of time which I think is a real blessing waiting to happen for a time when either or both of them might need someone (other than a parent) to talk to, who can truly relate to their circumstances.

(and please do note those gorgeously huge and lovely strawberries which were offered in super generous portions at the party...I can still taste them now...Delish!)

Yesterday was a bit of a frustrating day...firstly went off to church with Sam, who was particularly fussy and disruptive, so I had to leave the main church even before the worshipping was finished. Off to the baby room which has now been equiped with a tv, so not a bad alternative except that both the little boy and other mom already there were both coughing and sniffing something silly...so tried to hang around outside with the sunday school kids who were painting various items to place in the church garden, like rocks and little boards (BTW awesome idea, whoever's it was) but Sam threw a tantrum when I wouldn't let him open and close the entrance door. So back inside to the foyer of the church and kitchen area which, of course, has loads more doors worthy of tantrum-throwing requests. Then, to top it off, Sam decided to make a poo which is always such an awesome experience because, due to his aggressive sensory defensiveness at the moment, I cannot get him into the "lying down" position without him squealing hysrerically. So, Plan B? Have you ever tried to change the dirty nappy of a not-yet-walking two year old, with them in a standing position? No? You gotta try it...it's very entertaining.

Later yesterday afternoon went off to my cellphone service provider to renew my two-year contract, just like I did two years before now. But they would not allow me to renew because I cannot provide them with employment details!! Mmmmm....now why would I not be able to provide them with employment details...let me think....Oh Yes, it's because I am unempoyed...just like I have been for the last three years...which means, and I'll go slowly here for you, unnamed service provider (but whose name starts with a "c" and ends in a "c")so that you don't get lost...that I was unemployed the last time I renewed my contract as well. Which contract, I have to point out, has not once over the last eight or ten years ever been paid a single day late! Just had to get that out there.....Uuurrrggghhhh!

In closing, a short video of what a little smurf has to do when he has outgrown the weight limit on his mechanical swing...why, he swings himself of course :)

Oh, P.S., thought of some good news...this morning I washed my face with TRESemme Shampoo with a lower sulfate cleansing alternative and with added Aloe Vera and Avocado...which means my face will be protected against damage and breakage the whole day! How awesome is that?

*Oh Happy Days.....*

Torture...pure T.O.R.T.U.R.E.

These are the words that have, very melodramatically, been delivered to me several times over the past few days by my Glee-loving, feigning dizziness, ever-putting-on-a-show daughter. On Wednesday, when we saw the hand OT at Vincent Pallotti, we could not find parking close to the hand clinic so had to park in the hospital's general parking area about 300 metres away from the entrance. I know what you're thinking...she's young, energetic and fit...or so you'd think, AND didn't have a squirmey-wormey smurf on the arm. But alas, when we left the clinic just before noon, it was quite a show she put on complete with moments of nearly collapsing to the ground with the "torture...pure torture" of having to walk so far to the car!

Yesterday was even more of a Meg-atastrophe...not only could we not find parking in the general parking area, we had to park on an upper level parking area, which meant stairs. THE HORROR!!! So again, when we left, it was amidst regular outbursts of "torture...pure torture". She really is such a funny kid. Chris desperately wanted me to take a video of her "watching" Glee the other evening (she watches each episode an absolute minimum of at least four/five times...every....single...day!). Who woulda thought Glee was an interactive programme and required the watcher thereof to mimic every move made throughout the show. You would have thought she'd be able manage the occasional transition between hospital and car then, right? Anyway, Meg has been an invaluable help to me over the past week - it's thanks to her that Kim managed to refit Sam's splint on Wednesday, this time without hysterical screaming which meant a much more effective fit. And yesterday kept Sam occupied through pretty much our entire appointment with Dr dT, so that I could concentrate on what was being said. So I have just reserved tickets for her and and I to go watch the new Smurf 3-D movie this evening...it's a surprise, haven't told her yet.

Oh yes...our mysterious "orthopaed" appointment yesterday afternoon. I was watching an old Hillsong episode while doing my own "torture...pure torture" on the spinning bike last night. It was about negativity and how even a remotely negative outlook effects everything...our thoughts, our actions...our perceptions! Yesterday was a prime example. Here's what I was thinking : last week, when we saw Sam's hand surgeon, I had asked him about the lack of fluidity in Sam's hand movements (eg. when he waves, it is done in a series of jerks as opposed to a flowing movement) and he'd said that he thought it to be a neurological issue. I didn't prod any further because the whole appointment lasted about two hours and of course, by then, Sam was doing his own remarkably accurate impression of Grumpy Smurf. But by the time we arrived back at home the whole "neurological" thing had had plenty of time to mull around in my head and I regretted not asking for more information. Then on Friday morning, when Dr dT's assistant phoned and requested that I bring Sam in, my mind went wild and I figured that perhaps Dr C had also been giving more thought to the neurological thing and done some further investigating and come up with a gloomy diagnosis, but wanted Dr dT's opinion on it before one of them shared the bad news with me! Seriously, that is really what I was expecting. Boy, was I wrong!

The real motivation behind the request was that Dr dT had in fact been researching and considering and researching and considering...and wanted to explain to me, in person, with the aid of graphics and Sam's x-rays exactly what is going on in Sam's little left foot and what the plan is to rectify it (and, to top it off, there was no charge for the consultation). Slightly off the mark I was, I'd say. And, yes...here it comes...I am absolutely loving Sam's specialist's at the moment.

The only drawback (is there ever not one?) is that we might be doing the surgery on Sam's foot a little sooner than I originally anticipated, possibly by the age of 3/3½ which would mean May-December next year, but I was hoping to only do the removal of the right testicle around April (which would mean a eight month gap between this and the last op) but with Dr dT and Dr J (urologist) being at different hospitals we would not be able to couple the two surgeries together, so let's hope we are looking more around the 3½ yrs mark for the foot surgery. I am becoming increasinly anxious about the fact that that little right testicle is wafting around halfway to where it's supposed to be, mostly because of the reaction I get from others, mostly doctors actually, when I tell them. Perhaps we need to bump up that surgery to mid-March, depending on how much time I'll need to recover from the Argus. In fact, now that I think about it, with the Argus officially taking place on the 11th March, I might very well still be cycling it on the 15th (Yes, I do know you only have seven hours to finish)...mmmm, might need some further thought, the op that is....already have a headache just thinking about it all.

Our ST for this morning was cancelled due to an illness in ST's family, so we resume next Thursday. And of course we have little Matt & Nic's birthday parties tomorrow. Yay! for seeing our RTS family again. And, on Monday morning, it's back to PT...Yikes!

Remember this pic :

Sam in May 2010

And here's how much he's grown :

He can barely fit into the swing now and, seeing as he's become too heavy for it to mechanically swing him, he now swings himself. Did I mention that at our last paed appointment, Dr B pointed out that, taking Sam's corrected age into consideration, he is just just touching the very bottom line on a NORMAL...yes, I said it, NORMAL weight graph! 

(Not so) Wordless Wednesday