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

Smurfville goes GREEN!



Unfortunately not the eco-friendly kind...Meg started off the school holidays full of smiles and chirps after presenting her usual "A" aggregate report card, for which I can take no credit for as, with Sam's health been a little challenging over the past couple of months, Chris was the one who helped Meg prepare for tests, etc. I do have to say that I was a little surprised (and admittedly, a little impressed) that Meg still managed a good report because, apart from the fact that Chris goes alot easier on her than I do (if she gets something wrong I make her write it out a good few times and then recite it back to me a good few times and repeat-repeat-repeat if she still gets it wrong, while Chris will calmly say "You must just go over this-and-this again, okay?" to which Meg, with her hand already reaching for the remote control will go"Okay"), Meg's learn-a-phobia seems to increase with the onset of each new term. There is a life lesson just waiting to happen here...just not sure who is supposed to be learning it???

Friday's visit for Sam to the ENT had quite an unexpected outcome (more about that later) and so we decided to venture out for a super-quick breakfast on Saturday morning. Off we went bright and early to a (very) nearby restuarant in case Sam did not cope well with the outing and loaded with iPad, portable dvd player, a minimum of ten books and other smurf-entertaining-paraphernalia...love the advice and tips gratefully sourced through the RTS listserv. And ironically, Sam was probably the most relaxed person at our table. We arrived really early so there were hardly any other customers, quickly placed our order and then, to our dismay, within minutes the place started filling up, which sudden rush brought with it a mom and her son who were placed at the table right next to us but before even sitting down, were both coughing and sniffing quite worringly...for us, at least. Swift change into super-speed mode as Chris and I gulped down our breakfast and drinks as quickly we could to be suddenly interrupted by Meghan complaining of stomach cramps and running off to the bathroom. Chris and I sat there for what seemed like hours, beads of sweat rolling down our foreheads and eyes frantically searching for the return of Meghan's blonde head so that we could quickly escape (I might be exaggerating just a little...but really, just a little). After ten minutes I decided to go in after Meg (a real challenge for me as I do not do public toilets unless it is an emergency...and in this case an eleven year old girl who has previously locked herself into a cubicle at McDonalds and only come out after a staff member had to climb over the top of the cubicle to let her out....not returning after so long was definitely an emergency). And there I found Meg, "playing steering wheel-steering wheel" with the toilet seat and insisting that she could not stand up without throwing up! To the amusement of the entire restaurant (because the toilets just have to be at the very back of the place) we left just minutes later, me carrying smurf and the contents of half our household and Chris carrying Meghan! I am chuckling to myself quite hyserically as I type this because it just had to look so terribly funny...but trust me, at the time it wasn't. So, after Meghan's shoe-fiasco last week (can't remember if I posted about it) and Saturday's events, Sam can no longer be held solely responsible for all our family's embarrasing moments.

It wasn't barely two hours later when I too started feeling nauseaus and so the remainder of our weekend was dominated by yet another bug.

And so sad too because, after Sam's ENT appointment on Friday, it seems that perhaps Sam's system is/was in fact on the mend. After the usual greetings and niceties exchanged with Dr V I gave him a brief rundown of how I'd had Sam at the doc just eight days earlier after noticing that Sam's tonsils were swollen and had several little white follicles on them, advised him of the course of Orelox (for once, completely and successfully administered to Sam in its entirety) and then noticing just the day before that the tonsils looked exactly the same. While gesturing for us to take a seat so that Dr V could take a look, he advised that a second bout of tonsillitis within five weeks was definitely a reason to remove them.

He had a quick look in Sam's ears and reported that they look great (WooHoo) and then looked in Sam's mouth (amidst the usual amount of gagging and protesting of course - Sam's, not mine) and said "Mmmm...but the tonsils aren't even slightly red, so he definitely doesn't have tonsillitis now!" to which I replied, "But this is exactly how they looked last week when I took him to the doc!!"...to which Dr V replied, "But then he probably didn't have tonsillitis then either!!"

I managed to compose myself just long enough to retrieve my jaw off the top of Sam's head to say (rather intelligently) "HUH?"

I managed to hear snippets of Dr V explaining to me that although Sam's tonsils are definitely still very swollen and do in fact still have a few follicles on them, it is more than likely just residue from the really bad tonsillitis Sam had mid-February...but in actual fact, all I could think about was the fact that, probably for the first time EVER, I had managed to get an entire course of antibiotics into Sam...and it had all been for N-O-T-H-I-N-G!!! Seriously? Anyone got a shotgun I can borrow? It's time me and that darn Murphy had us some words!

Anyway...moving swiftly along...despite the hour of travelling to-and-from the ENT for a barely eight minute, not-terribly-exciting consultation...the awesome part about all of this (apart from the obvious relief that Sam's tonsils don't have to come out just yet) is the hope that Sam's immune system is possibly, with the help of the Zithromax I presume, managing to recover...let's hope I don't have to change that last statement to "Sam's immune system WAS recovering" after the twin-tummy-bugs Meg and I were entertaining this weekend!!!

Fievel goes South.....

...to the ENT at 1:30pm :( I was really REALLY hoping that somehow Sam's tonsils would recover enough to be able to delay removing them but I happened to spot them yesterday ("spot" meaning that I lie in wait for ages waiting for an opportunity to stick my little light down Sam's throat - having a little smurf who cries so passionately, thereby opening his throat beautifully, is not all bad all of the time) but they don't look much different to how they did before the Orelox course. Still, I thought perhaps I'd give it till Monday before making the appointment with the ENT, just in case Sam's system was having a delayed reaction to the antibiotic which might suddenly clear up all nasties over the weekend. Disillusioned much?

Sam did not have a good night though, lots of chokey-apnoea's and a little bit of fluid draining out of his ear so trying to put the whole tonsillectomy thing off any longer just seems senseless. That's unless Dr V is suddenly struck by an awesome revelation concerning a Plan B. It could happen, right? The only consolation, or so I thought, of doing the tonsillectomy sooner than later was that I was hoping to bring in a dentist who could have a look at Sam's teeth while he was under anaesthetic, because there is absolutely zero chance that he would tolerate a normal dentist's consultation. Over the past couple of months, Sam's teeth seem to have suddenly weakened and the one front tooth is almost chipped right down to the root, just from him chewing on his plastic toys, etc. I've been told that its more than likely due to the acid reflux which is slowly eroding his teeth, so I've been quite desperate to find out what we can do to avoid further deterioration. But as Murph would have it, there is not a single dentist at Vincent Pallotti! Very frustrating. So now we'll have to wait until Sam's foot surgery takes place in Aug/September as it's been done at a different hospital which, thankfully, has a dentist or two practising there.

Pushing illness aside for a minute (if only!) Smurf is sporting a new haircut. Nothing fancy, the usual close cut. It would be really great to see Sam with a super cool little boy's style, but for now we have to opt for what takes the least amount of time and attracts the least amount of vomit!

Sam loves using dad's beard as a scratching board - nothing like a little smurf who does his own sensory brushing!

Sam and Fievel - possibly separated at birth???



Since the beginning of OT, Sam's therapists have tried, always unsuccessfully, to get Sam to crawl through little play tunnels or even just to go inside a little play tent but Sam just freaks out every time and usually retreats into defense mode. Yesterday morning at speech therapy, Tanya had as usual set up different play areas in the room, one of which was this little tent. While busy on another activity, before even attempting the tent, Sam suddenly crawled over and without a second's hesitation crawled inside to play. He stayed there for a while, crawled out and then crawled back in again...it was really quite amusing.

How much you want to wager that I'll go bragging at OT next week and then Sam will point-blank refuse to do it there?

So the school holiday has officially begun...barely a half hour ago - it would be amazing if it wasn't almost entirely spent filled with illness and doctors' rooms and the likes, but I know we are not alone, even if it does turn out that way. Many of Sam's RTS siblings, some of them thousands of kilometres away, are battling with illness at the moment. In a warped kind of way, it's almost reassuring - just a few days ago I was quite determined that we needed to sell our house and move into a small little flat or townhouse somewhere, free of animals and gardens and with the absolute bare minimum furniture, appliances, etc to ensure as little chance as possible of Sam being exposed to allergens or germs or anything really. It's almost impossible not to wonder whether you're contributing, albeit unknowingly, to the problem...but with there being no guarantee that it would remedy Sam's immune issues at the moment, it does seem a little drastic....for now at least. Can't promise there won't be a For Sale sign on our front lawn next time a new ailment does the rounds!

Sam luvin' birthday parties!

It was Meghan's birthday on Tuesday and even though I vowed that birthday parties were a no-no after the tenth year, here I was planning a tenpin bowling session for nine kiddies. We had originally planned to go ice-skating, but one of Meg's friend, Erin, has been through quite a great amount of trauma over the past few weeks after a nasty ice-skating accident, which has left a finger on her right hand with a pin in it (identical to the pin Sam had in his thumbs after his corrective surgery) and securely splinted till after Easter. Truth be told, I cannot say that I was even remotely disappointed that we rather settled on tenpin bowling instead after a particularly exhausting ice-skating birthday party not too long ago (which could well have been the party after which I took the "no more birthday party" vow).

Had Sam not been ill, we had planned on taking him with to the party as he adores being around children but luckily enough for him, we made it home a good hour before all the children were to be collected...and boy did Sam have an absolute ball with such an awesome audience....

At first you can't spot the little smurf....

But there he is....instructing everyone in a game of "Copy Sam" which game is derived from a Teletubbies episode (can't believe I used to complain about Barney) where a little girl leads a group of kids in Copy Me! Sam LOVES this game and insists on all-round participation, regardless of where we might be....a doctor's room, hospital, therapy session...if he can see you, you better copy Sam :)

And, of course, there had to be some twisty-flappy movements involved.

Group photo - with the exception of the Birthday Girl who was outside delivering an extremely believable rendition of "It's my party and I'll cry if I want to!" This year was definitely D.E.F.I.N.I.T.E.L.Y the last birthday-party year!! 

I adore Meg's group of friends though - they all are really wonderful with Sam. When children reach the age of ten/eleven, that's quite often the age around which compassion, consideration and respect for others either flourishes or becomes obvious in its absence. Meg's friends will ask genuinely inquisitive questions about Sam's development (like why he doesn't walk, etc) but I have never heard any of them uttering an unkind word about Sam's behaviour, appearance, etc. or anything else. I had an unusually large audience when changing Sam's dirty nappy on Saturday afternoon and Sam was offered many words of sympathy when his "battle scars" were noticed.

I think it's really important for siblings of special needs kids to know that their brother/sister is accepted by their friends. It must surely play a huge role in their own acceptance of their sibling...I would be devastated if Meghan was faced with a situation where she was ashamed to bring friends home because of Sam, or afraid of what reaction her friends might have to him. I know its still very early days but, thankfully, so far so good!

 

A very rare, almost-complete (with the exception of Luke) family pic!