24th May 2012....a day of profound joy...

...when for the very first time my, completely non-verbal, son told me that he loves me.

And even though it was done by means of his iPad...it was as sweet and as cherished as if it had been soft little smurfy words spoken from his mouth.

Sam has a Grasshopper App on his iPad called "I love Mom" and each page of the "book" features a picture of a different mom and her child in various aspects of their relationship with captions such as "When I am afraid, Mom helps me be brave" and "When I make something, Mom is proud."

One of the pictures is of a dark haired woman kneeling down in a flowery field with her pretty little blue-eyed, blonde-haired daughter leaning on her from behind and giving her a hug...and the caption is "I love Mom". Now I look nothing like this mom and Sam certainly looks nothing like the little girl but he plays this page over and over and over again to, seemingly, hear those words and/or appreciate the smile of the little girl. This afternoon Sam was iPadding next to me and as usual kept replaying the same page, I smiled at him and looked at something on the tv when he grunted really loudly to get my attention, then reached his arms out for my neck, pulled me closer to the iPad and played the page again.

Now, I have not used the "Miracles" label on my posts for some time...but this certainly is worthy of just that. Sam is an extremely affectionate little boy, regularly dishing out precious hugs and gobby, smoochy kisses...which of course I adore, but never in my most hopeful dreams would I have imagined Sam would understand the concept of relationships and emotions. Pure bliss....pure God!

Therapy...swinging...and Phil :)

One of Sam's birthday pressies (you know, the "just for fun"ones that have nothing to do with therapy or anything like that...ahem) was a play tunnel similar to the ones Sam's OT and ST have been trying (unsuccessfully but for one occasion) to get him to go through. We've pretty much left it open in the lounge-cum-therapy room and eventually, when enticed by Meg to follow her, Sam crawled through...and then he crawled through again...and again...and then he followed Belle through (the cat who possibly also has SPD)...until he reached the point where he was quite comfortable going through on his own...although every now and again it seems as if he has to do a little self-motivating to get there...

Boldy crawls in...

Just as boldly reverses out...

Crawls back in with a little "company" for the road...

Reverses back out to look at something on the tv...

Slowly introduces his cars to the tunnel...while still watching tv

Back in...

...and we're through...

It's always precious to see Sam making a little progress and him, quite willingly, going through the tunnel (without being lured with his iPad no less) is really quite big for Sam as a couple of months ago he would have had quite a solid freak-out!

I was a little anxious about our OT session yesterday morning - not because of the OT itself but because it was to be our very first encounter with the walker we spoke about last week. I was still very much undecided about the whole issue and really not very confident that, regardless of my own personal feelings, Sam would even go into a walker/gait trainer without a struggle...and quite possibly a little sensory regression. Well it was really kind of taken out of my hands when at first glance it was obvious that the walker was just way too big for our little smurf. The flash of relief I felt made up my mind that, at least for a little longer, I am quite happy being Sam's "human" walker, holding him around his torso as his PT instructed and spending a relative amount of time each day (albeit on my knees or bent over) allowing him to explore his world on his feet. If there is really no substantial progress with Sam's walking after his surgery in September then we can look a little more seriously at obtaining a walker for, quite possibly, both him and I by that stage :)

Sam simply loves unpacking and repacking the bookcase, according to his own specifications of course. Quite some time ago I blogged about Sam's very endearing preference of Meghan's Children's Bible as the book he would pause on and spend some time paging through....and nothing has changed in this little smurf's heart....

...for a second it looked like Billy Graham's  "Angels" might also have captured his interest...

...but only for a second :)

Sam in his sensory swing (the one that hangs in the middle of our lounge). He quite enjoys his swinging now and at least two/three times a day will "ask" to go in.

I posted this pic on my FB page on Sunday evening : Sam is a music man for sure, he adores music and rhythm, and he has quite obviously decided on who he thinks should be the next American Idol! Mommy's boy for sure xxx



Not much else is happening in Smurfville - Sam started with a really congested nose (again) a few nights ago and has had a low-grade temp over the past couple of days. At this point his little system seems to be keeping anything more serious at bay so we can only pray that health prevails.

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 ;)

The Smurfy Swagger...this is how I roll!

With my third birthday just around the corner, I know that Mom and Dad often feel a little sad about me not walking yet.  Gosh, I even feel sad sometimes. I love being able to get around on my own but sometimes I need one or both of my hands while I'm crawling...which is why I've pretty much mastered my version of "walking".  It's definitely not as smurfy as walking on my feet would be but right now that's just way too scary for me. I know that, if I fall, I only have 80cm between my head and the ground...but to me it may as well be 8 metres. And I also know that, if I fall, I might only cry for a few minutes after getting a bump on the head...but to me the pain feels more like a blow from a sledgehammer...so I'll probably cry a little longer (and perhaps even share a little regurgitated Pedisure). Even though there's lots of space between the different pieces of furniture in our home, to me if feels like I'm trying to out maneuver closing-in tables and chairs, which tables and chairs appear as huge as towering skyscrapers instead of being barely taller than my own head.

I definitely feel safer on my knees for now...and I heard Mom checking with Heidi if it was okay for me to move around like this and Heidi said it was really quite alright...that even though I am only on my knees, I still need to balance and there's still some rotation and shoulder-hip-dislocating happening...or was that dissociation...definitely something with a "dis"! And it does make for easier carrying of items which need to be thrown on the kitchen floor for noisemaking purposes...and much better aiming too.

Check me out :

I can even walk and read...

...not even my warm, fleecey dinosaur gown stops me.

Taking my wooden pig for a walk ("pig" is one of the latest signs I've learnt)

Taking Barney for a walk too :)

There isn't a picture of it yet but if I'm really excited about getting somewhere or to someone quickly, I can even run xxx

Let's play pretend...

...we'll pretend that this is the first time I'm going to throw this little "brag"out there, because just about four months ago I bragged about this very same thing and barely a week later it became victim to Murphy ;)

So (as posted before), Sam has become quite insistent on eating whatever we have on our plates, as opposed to his pureed food. Slowly I've been testing (again) what he can tolerate without gagging. Wednesday just happened to be one really good day, sensory speaking, as Sam had a chocolate spread sarmie for lunch, a really small portion of hot dog (including the vienna, which usually always makes him gag) and then finished off with a generous helping of macaroni and cheese for supper - completely unpureed. And without a single gag.

Now that I sit and think about it, Sam's had quite a good week with "small" victories all over the place...as if any victory could ever really be small. Rewinding back to Tuesday's OT session, for the first time despite many attempts, Sam eventually managed to crawl through the little play tunnel on his own and out into the attached tent. Granted, after getting stuck halfway through when the spatial change from tunnel to tent frightened him, we had to encourage him along by placing his iPad in the tent...but it's still a huge achievement for Sam. Wednesday's PT session played out pretty much the same as every PT session with Sam crying unconsoleably through every minute and me leaving through the waiting room amidst several looks of sympathy but somehow, through all the tears, Heidi still managed to work Sam through most of his routine while I knelt, towel in hand, wiping away the tears. And then of course, the following day, came the eating victory...even if it happens to just be a once-in-a-while occasion for now.

Sam had his dentist appointment yesterday morning and then we had a full afternoon ahead of us with Meg's hockey match and then ballet practice. I was a little anxious about how Sam was going to tolerate the afternoon's activities if he needed some work done on his teeth just hours before that, especially as he wasn't going to be able to have much of a sleep before we headed off to the school. The plan was to somehow dance/sing Sam through the dentist consultation hopefully managing to distract him as much as possible, then quickly dance/sing him to sleep for a short nap, then head off to the school to carry out a swift drive-by child-grabbing and then on to Panorama while Meg ate and changed clothes in the car, entertain Sam with iPad for duration of hockey match then as the last whistle blew charge across the field with Sam and iPad under one arm, to grab Meg and kit bag under the arm (which is really quite funny because both Meg AND Sam could fit INTO the kit bag), charge off back to Gene Louw...execute a cautious but again swift drive-by child-dropping and head off home with a huge sigh thanks to Brampies, who was going to collect Meg from ballet for me to spare us another hour of hanging around.  The plan suffered a bit of a blow on Wednesday evening when I injured my ankle while braving peak hour traffic on the busiest highway in town, to save a lost and bewildered puppy caught in between two high-paced, unrelentless streams of cars, almost guaranteeing him a horrible and brutal death!!!  Okay, that might not be entirely true...but it certainly sounds a lot more charming than me misjudging a step because of not being able to see over the laundry basket I was carrying.

Sam's dentist appointment with Dr Lim could not have gone any better...she walked into our home as warm and friendly as if she was a regular house friend, immediately putting us all at ease...and went to sit on the floor next to Sam to speak to him, which of course he adores - Sam loves attention, especially when its from someone who's prepared to come down to his level to communicate with him. So the actual examination took literally a couple of minutes and Sam did cry and felt a bit sorry for himself for a while after but it was all so worthwhile when Dr Lim told us that, despite the chipped tooth and a small cavity on Sam's one canine, his teeth actually look really good. She assured me that the chipped tooth is not causing Sam any sort of pain or discomfort and that the cavity is so tiny that it was not going to give Sam any trouble for a long while, at least until we see her again in a year. Yes, a year - because there's no treatment that needs to be carried when Sam has hit foot surgery in September.

Two other really helpful bits of information which Dr Lim shared was that firstly Sam's gums are terribly swollen and red with his molars still trying to come through (his teeth take so incredibly long to cut) which is more than likely the reason for his restless sleeping at night...and he still has another four to go. And also quite interesting was how bad nighttime mouth-breathing can be for your teeth...and, despite the adenoidectomy, Sam still mostly breaths through his mouth at night. Anyway, the whole visit was an absolute pleasure, confirmed by Sam who held out his hand to Dr Lim and whined when she left.  I highly recommend Dr Lim to any parent of a special needs child...her caring and comforting manner alone is reason enough to seek her consult, only made more valuable by the fact that she is prepared to make house calls in order to further make the experience less traumatic for the child. I have to, again, thank our Aunty Anthea for showing us to her in the first place xxx

The rest of the afternoon went by just as smoothly with the help of some Cataflam and Brampies, who we dragged with us to the hockey match so that I could avoid having to carry Sam around the school at first until we knew where the Genies were playing. Once the match began, Sam sat good as gold on my lap and watched video's of Meg on my phone and even with all the in-and-out of the car and driving, hardly moaned at all. 

This morning I managed to transition Sam from my lap into an, almost, unsupported sitting position on the floor where he stayed for at least about ten minutes playing, with just his arm leaning on my leg as reassurance that I was still there. When he seemed ready to move, he slowly (and maybe a little shakily) pulled himself into a crawling position with just a little help from me. This, so far, is probably the most significant victory for me. The eating thing is a little frustrating but Sam (as with most of his RTS siblings) has never done great with it so when he regresses back to pureed food I still don't feel like we've lost anything. But the total regression from being able to sit and transition for sitting to crawling and back again...that's been really quite difficult to move past. And as Sam goes longer and longer without making some progress back to that milestone (which took him 18 months to master in the first place) I grow more and more worried about how more difficult it's going to be working our way back to that place. So, we pray that this morning's little breakthrough is the little preview of light (or, in Sam's case...iPad) at the end of this particular tunnel.


"Every child is gifted. They just unwrap their packages at different times"  Unknown.

Roses are red,

Little smurfs are blue!
I'm almost certain
That something's on the brew!

Something is most definitely bugging our little smurf :(  He has been really moaney and whingey this past week, but most frustrating is his sleeplessness. We've gone through this before a few months ago where he spends hours upon hours at night thrashing and whipping himself around. I cannot leave him in his cot because he inevitably gets hurt, so he lands up in the bed which means I spend a large part of the night covering my head for protection...kinda like in those war movies when the soldiers crouch down, arms draped over their heads, quivering in fear...except it's little hands and arms I'm trying to avoid and not grenade-debris. Mmmm...which brings to mind helmets - perhaps worth a consideration? Although I can't imagine how comfortable I'm going to be sleeping with a helmet on. By Saturday I was pretty sure I'd be waking up....uhhhh, let's rephrase that...getting up ("waking" would imply that something remotely resembling sleep takes place) with a blue eye one morning in the near future - watch this space!  So again we're faced with the frustration of not having Sam be able to tell us what it is that's irritating him, if he has any pain or discomfort...or whatever. I had an idea it could be his ears because the last time he carried on like this at night, his ears were filled with fluid. But our RTS kiddies have these really awesome in-your-face ear canals and if you have a small and powerful enough little light, you can actually see quite a decent amount of what's going on in there, although obviously not entirely what condition the eardrum is in. I could see, though, that the little grommet/tube is still securely in place on both sides, there's no fluid or anything leaking out which presumably would happen if there was something funky happening in those ears. Sam's tonsils are looking much better than they have in a long while, still slightly enlarged but not at all red and minus those little white follicles. Urine tests check out fine - so I am good and solid stumped (Yes, again)...and can do nothing more than just wait it out and hope that whatever the problem is, it will either blow over on its own or reach a point (like a fever or obvious infection) where we now know for sure that Sam has a good reason to have taken on his Grumpy Smurf persona again.

Grumpy or not, we headed off to Haven of Hope on Saturday morning...moaney, whingey smurf in tow (or should I rather say...on arm) with the hope that perhaps a little interaction with his equine friends might improve Sam's mood. However, Sam seemed to prefer staying in the car watching his Teletubbies dvd (oh the joy...just can't escape those "hawwo-ing" little creatures) while Meg and Chrisna had an awesome time with the beautiful Prince and rather-cheeky Thembi. Every time I ventured near one of the horses to just say "Hi" and have a bit of a petting, Sam protested and, ironically enough, the only one he seemed willing to have anything to do with was Strawberry the pony. In Sam's defense, the wind was howling quite hectically and the weather was a little miz so perhaps he just wasn't in the mood to be outside...or inside...or awake...or asleep...or left to entertain himself...!!!! H-E-L-P!!!  (Hee Hee)  Hopefully our next visit to HOH sees little smurf in a much better mood!

Surprisingly enough Sam had a relatively peaceful sleep on Saturday night and only woke up after 8am...which was wonderful for me, but not so great for the little doll Sam kidnapped from our church's cryroom last Sunday, which we intended returning this weekend. The good news though, despite Sam's clingy and challenging mood continuing through the rest of the weekend including last night, is that I will soon have my rugby-player physique back...particularly the neck and shoulders...as little smurf (who just doesn't seem so "little" when you're carrying him around on your arm for a good eight to ten hours a day) has decided to revert to his original method of falling asleep - which is me shushing him in my aching arms, singing horrendous, out-of-breath renditions of "The-Wheels-on-the-Bus" or "Mocking Bird". Nothing like a little regression to give you a swift kickeroo on the rearend as a reminder to completely and totally cherish progress when it happens.

Couch-Potato Smurf

Soon-to-be-renamed Spice!

The latest arrival at Haven of Hope, all the way from Stilbaai - Knight!

Thembi and Dollie watching Chris watch them...while waiting for the girls to return from their ride

A brief moment, en route to see Strawberry, where Sam allowed Chris to carry him.

He looks so tiny for a little boy who is turning 3 years old in less than a month :)

So, that's been our week in a nutshell - obviously with all the usual therapies and, now that the school term has started again, afternoon activities for Meg and more of the same for this week. On Thursday, Sam has a dentist appointment which I am really looking forward to. Yes...really! Sam's teeth have taken a real beating with all his antibiotics and acid reflux and lost a large part of his front tooth when doing some mouth-stimming on Nemo (Sushi anyone?). I have been dreading the inevitable dentist's appointment but after spending ages Googling and asking both nearby special needs schools and some of Sam's medical team for a referral to a dentist who specialises in children and has experience with special needs kids, Sam's Aunty Anthea referred us to a lovely lady, Dr Shirley Lim, who is coming out all the way from Hout Bay to see Sam in the comfort and (taking Sam's SPD into consideration) security of our home. Once Dr Lim has assessed what treatment Sam requires, she has also advised that when Sam has his foot surgery at N1 City in September she would be prepared to travel out again to do the necessary work while Sam is in theatre - so love avoiding unnecessary anaesthetics!

Busy Smurf

Little Conqueror Smurf has been somewhat busy during the past week. On Saturday morning, now that Sam's health has been playing along, we paid a long-awaited visit to Haven of Hope Equine Aid Centre. We carried with us juice bottles, sunblock, Sam's iPad (of course - we seldom go anywhere without it nowadays) and the very realistic expectation that Samuel might only last a half hour on the farm before becoming niggley, forcing us to come home. The first hour was spent re-introducing Sam to the farm and especially Strawberry, the little pony we hoped Sam would brave a ride on :

But while Sam did manage a very strained, anxious attempt at sitting on Strawberry he did not seem at all comfortable and quickly wanted to get off again. He even refused to pet her, despite lots of encouragement. We kind of resigned ourselves to the fact that the only ones benefitting from any riding that morning would be Meghan and Chrisna and Sam and I settled under the gazebo with the iPad to pass the time away.

After a little while I went over to say hello to "the Prince"Jabu and quite spontaneously and without any prompting Sam stretched out his hand to touch the beautiful creature...

...and without any hesitation joined me on a short ride on the Prince, even occasionally stretching out his hand to pet the horse's mane (and suprisingly enough not even once attempting to pull it).

Being able to just get out of the house and enjoy the company of the horses as well as Aunty Juanita, Aunty Maryke and another lovely lady named Tanya, who took to Sam in a very special way, was awesome...we hope to make it out to Haven of Hope again really soon :)

With all having gone so well on Saturday, on Sunday morning we decided to push our luck and try and attend church as a family for the first time since the 4th December. Again, Sam surprised us and made it through the entire service with the help of his (muted) iPad which was wonderfully tolerated by the kind people sitting close to us. Last night our church hosted a Passover Dinner which we attended with Sam, who was an absolute little star the whole evening and charmingly smiled at anyone who happened to give him even the slightest bit of attention. By this morning Sam seems a little unsettled and has had a very restless night so perhaps all the changes to his routine are now taking their toll, perhaps calling for a quiet few days over the next week or so, but we can hardly complain. Sam's system has most definitely kept itself strong against the tummy bug that Meghan and I had which means Sam has now had about three consecutive "illness-free" weeks which for some might not seem much reason for celebration, but here in Smurfville it most certainly is not only reason for celebration...but reason to be truly thankful for all the prayers which are still being said daily for Samuel.

There has been quite a bit of talk recently on the RTS listserv regarding one of the more worrying side effects of the longterm use of Losec (Omeprazole) being that it prohibits the efficient absorption of Vitamin D, resulting in weakened bones which for some of Sam's RTS siblings, has proven quite troublesome. Even before this matter came up recently, I have never felt completely comfortable with the amount of medication Sam has on a daily basis and quite some time ago (probably about 18months) actually did try and wean Sam off the Losec, which promptly resulted in the one and only time that Samuel ever suffered from aspirated pneumonia. Apart from that short break, Sam has effectively been on Losec for a good two-and-a-half years so I thought it might be a good time to consider another attempt at weaning him off, perhaps with the help of a natural remedy this time. Aloe Vera Dew was strongly recommended as a good alternative by most of the moms on the listserv, most of whom are based overseas though, so when we went off in search of the Aloe Vera Dew the closest alternative we were offered was Aloe Vera juice of which 250mls of the bitter liquid has to be taken at a time...not going to happen with our Pediasure-only drinking little man. As a last resort, we took a super-short visit to a not-so-local shopping centre last week.  Super short because while our travelling time was approximately 30 mins, Samuel lasted a total of about 3 minutes in the actual centre.  Shopping centres are just one of those places where, healthy or not, Sam will struggle to cope...and quite understandably as I can barely tolerate them myself and (as far as I know) I don't have anything near the amount of sensory issues Sam has. Anyway, despite having to leave early, the trip seemed worth the drive as a natural pharmacist recommended something called Iberogast as a natural alternative to the Losec. Before beginning the weaning-off process, I thought I would first use the Iberogast in conjunction with the Losec to first make sure Sam's system will tolerate it. Wednesday afternoon Sam's tummy was making some really strange noises and rumblings and he's not eating and drinking 100% so now I've stopped the Iberogast again, will wait another day or two to see if Sam's tummy recovers and then will try and introduce it again, in case it is something else that is ailing Sam. If all else fails I'll probably persevere with the Losec a little longer and then towards the end of the year, by which time Sam will have been on it for just over 3 years, will try weaning him off without an alternative. The other option is another barium swallow study which might just surprise us by showing that Sam has managed to outgrow the reflux, but instinct tells me he does still have at least a degree of it at this point and, with Sam's foot surgery in September, I am desperate to keep all medical procedures in the interim to the absolute minimum - unless life threatening, of course. But there are many of Sam's RTS siblings who have been on Omeprazole for way longer than Sam so I don't believe that prolonging its use by another six months or so is going to make that much of a difference now. To be on the safe side, I will mention all of this to Sam's orthopaed when we see him in a few weeks time.

Tuesday morning sees the start of the second school term and we jump straight back into OT on Tuesday morning as well (after bunking OT last week on account of my birthday) but in the meantime Smurfville wishes each and every one of our readers a Blessed and safe Passover weekend xxx

Potty Leapfrogging

This morning started off quite wobbley...and by "this morning" I mean barely this morning. Just after 12am Sam started emitting some really funky vibratory sounds and then became quite restless and whingey, so we put him in the bed with us (as opposed to where he usually sleeps in his cot....far on the other side of the bed, so "far" in fact that I battle to get our bed made in the morning because there is absolutely no gap between my side of the bed and Sam's cot). Minutes later Sam presented some more funkiness in the way of a rather potent dirty nappy, amidst more moaning and wriggling around which, I was sure, could mean only one thing...his system had finally, and almost expectedly, given in to the stomach virus that was still hounding Meghan up until Wednesday evening (Five days? Really? What happened to the 24hr bug?).

After a couple of gag-moments we decided to top up Sam's Motillium and were in the process of deciding which painmed to give him for the cramps when Sam promptly fell fast asleep. I was pleasantly surprised when by 5am Sam had still not had any more tummy troubles, so I lay in bed to the background noise of heavy rain and what sounded remarkably like hail at one point, staring at the alarm clock while contemplating exactly how long I could prolong having to drag my behind out of bed before going to make up Sam's Pediasure...when the alarm clock suddenly went black...along with everything else both inside and outside our house. What an awesome time for a power outage! Poor Chris got kicked out of bed to go rummage for the gas stove downstairs so I could get a start on Sam's formula. Thankfully, Sam's bottle was ready and waiting for him by the time he woke up and just minutes after drinking his fill, the electricity came back on...and all was right with the world again, especially Sam's world as he sat in front of the tv pushing each and every button while waiting patiently for something to come alive on the screen. Quite remarkable how easily we take for granted things like electricity and all the luxuries that come with it like microwaves, kettles and the rest. But even more appreciated than the return of our power is that (touch wood) Sam still has shown absolutely no further sign of having picked up the tummy bug! I'd be quite happy to sacrifice a week of electricity in exchange for Sam not picking up any additional germs just now :)

Talking about taking things for granted, I posted recently about Sam's apparent awareness of when he urinates and, even more mindblowing, that I have now on several occasions actually instructed him "to wee" and either by pure, freaky coincidence he has obeyed....or, the preferred choice of course, he actually understands what I am saying and is able to organise the correct message from his brain to the correct part of his body, to actually do it. Potty training Sam is not something I have even, till now, begun to entertain. When conquests like walking and talking still present such a formidable challenge for him, how can I leapfrog over them to potty training? Surely the two key factors you need in order to potty train are mobility and communication...but perhaps I have still not quite mastered the art of thinking out of the box where Sam's development is concerned. While Sam might not move and communicate the same way his peers do, he certainly does still get around AND communicates. So, after loads of encouragement from our family (both relatives and RTS) with a little apprehension and a good deal of excitement we went off to buy Sam his first potty...."first" because I just know that with Sam getting it right the first time (on our part) would be almost impossible. We chose the most basic, "neutral" looking potty we could find.

Because Sam has had no experience with a potty or potty training, he had no preconceived fears about its presence in our room on Tuesday evening and I managed to almost seat him blindly on it...where he stayed for a relative amount of minutes just before I bathed him - unfortunately without anything particularly exciting taking place. But the very next time I tried to sit Sam on the potty he completely freaked out...and of course he did, because being placed on a potty involves one particular action/position Samuel no longer tolerates - SITTING! My, almost 3 years old, smurf cannot/will not sit. He does not sit on the floor, he does not sit on a chair - no matter how cute and child-friendly it is, he does not sit in a car, he does not sit on a baby-scale or any other place besides on my lap and (still with some hesitation) in his feeding chair, the bath and his carseat. We have tried every kind of intervention related to OT to try and overcome the problem, I brush him...I swing him incorporating deep pressure and vestibular movements into the motion, but at this point there is absolutely no sign of progress. It's fairly frustrating - I was looking through photo's and found some of him sitting on the floor with his birthday presents last year in May. I do know though that he will get there again...I am not sure how yet, we've basically tried everything we can think of. Very seldom I manage to fool him by doing subtle things like letting the water out of the bath before I take him out so for a few seconds he's actually sitting unsupported in the bath. More often than not the noise of the water gurgling down the drainhole frightens him into awareness or he's little mind is too sharp and he realises what I am doing before the water's out.

Sitting is just such a basic function, isn't it? It is something you just take completely for granted, although a celebrated milestone for sure, not really considered as much of an achievement as walking, talking, etc. But yet, it is significantly missed when its absence limits functioning and basic activities. I spend a great amount of time watching programs and documentaries on special needs kids/people, many of them with conditions which make it impossible for them to sit other than in wheelchairs or support chairs and today, for the first time really, I could imagine how being able to do something as simple as sitting unsupported could make such a huge difference.

Sam's OT and I were again discussing the sitting problem on Tuesday, particularly because there are a number of activities which Sam cannot pay the proper attention to because he has to do them with just one hand while on his knees. Not for the first time Christa reminded me that while Sam's fears are so challenging at the moment, the source of the "problem" is also a completely awesome blessing - being that he is so BRIGHT and so wonderfully aware of everything that is going on around him and while his little mind spends a lot of time soaking up memories of all the things that have caused him distress or trauma, it also spends a great deal of time soaking up things like knowing his numbers, learning his shapes (he recognises a heart, star and triangle already), learning colours (he recognises blue and brown), zipping through his iPad like a pro, being able to start and stop video's on my cellphone, knowing the actions for songs like "Heads, Shoulders, Knees and Toes" and "Two little dicky birds", being able to follow verbal instruction and increasing his signing vocab as well (having fairly mastered "more" and "duck" Sam is now slowly mastering - daddy, baby, teddy bear, chair and bottle).

The signing achievements are really quite delightful - there was a time when I was convinced signing would never be an option for Sam but over the past few weeks he is not only showing more of an aptitude for it, but on a few occasions (with yesterday's ST session being one of them) he has looked down at his hands mid-play and moved them around as if trying to figure if he knows a sign which might express what's on his mind at that moment....it's really quite fascinating.

Random Pics :

Sam and Dad jamming to some 'tunes...

Meghan being.....err.......Meghan (?) before the tummy bug hit!

Not sure how impressed Papa Smurf will be with me sharing this one...but Sam has a fascination with teapots. Go figure! I just couldn't help but indulge him....

Haven of Hope Equine Aid Centre