"Let's start at the very beginning,

 A very good place to start.

 When we read we begin with A-B-C,

 When we blog we begin with X-Y-Z"

 

Why? For the sake of anyone reading this post of course.

 

I know it has been way long since I last posted so the chances are if I try crank up the ol' memory to record everything that has happend, in the correct chronological sequence, over the last couple of months I am a) going to provide an overlap of what I blogged about last and b) going to get myself all muddled up. This way, if I start with the more recent and work my way back...once you notice an overlap you can just stop reading :) A little bit of much ado about nothing, I fear.

 

The past few days with Sam have been all over the place, although mostly up the wall where behaviour is concerned...agitated, defensive and bringing a whole new level to being highly-strung. It is not unusual for Sam to go through these kind of post-surgery episodes and taking that he had his ENT procedure on the 6th June it would make perfect sense that we'd still be getting over the trauma and recovery. Here's the thing...there's wasn't much of a procedure to recover from. Up until the 4th June Sam was still scheduled for another glaucoma examination, scraping of the adenoids, a new set of grommets (his right eardrum burst on his birthday) and, of course, a tonsillectomy.  But at our usual is-Sam-okay-for-theatre consult Doc Paed mentioned that since Sam's last course of incredibly-easy-to-administer antibiotics (have I blogged about that yet?), his tonsils were not only looking quite good but appeared to have shrunk a little, making him still uncertain whether removing them at this point was going to bring with it more benefit than trouble. Doc Paed said he would give Doc ENT another call, which I was relieved about, and would get back to me. Unfortunately life happened and by the morning of the 6th I had still not spoken to Doc Paed.

 

Panic.

 

I like being prepared so it was a little troubling arriving at the hospital an hour before the procedure and still not knowing exactly what we were doing.  As a result there was a very awkward "moment"  (about a 15minute long moment to be precise) in the theatre waiting room where everyone stood, fashionably garbed in their attractive green surgical gear, waiting for some kind of indication as to where we were going with Sam's tonsils...the porter looked at the nurse...the nurse looked at the ENT...the ENT looked at me...I looked at the random dude walking behind me.

 

"Oooohhhhhh! You want ME to make the call? Jeez, why didn't you just say so!"

 

So, trying to buy some time while my little mind worked desperately at untanglying itself from the frightening web of uncertainty and blankness it had found itself in, I ventured, "So, I know what the possible challenges would be if we went ahead with the tonsillectomy. What would be the benefits of doing it now as opposed to, say, in a year....or fifteen?" 

 

Sam wouldn't snore anymore.

Sam doesn't snore.

 

No more tonsillitis and better health.

Sam has only had tonsillitis twice in more than 15months, the rest were all throat infections. As far as better health goes, while this is often the case it is not a certainty though - Meg had a full ENT procedure when she was 3 years old (grommets, adenoids, tonsils removed, sinus, drain, etc) yet without fail she will get at least one bad throat infection each year and/or sinusitis, etc.  I have no doubt Sam will follow the same pattern.

 

From round 4 years old pain becomes memorable to a child so ít's best to do the tonsils before then.

 

This was the answer which finally made up my mind (well, that and that I'd in the interim heard the one anaesthetist mentioning to the other that she'd spoken to Doc Paed the previous day and he had re-iterated how strongly he felt about us not touching Sam's tonsils for now).

 

Please don't misunderstand me...Sam has a wonderful ENT who was simply advocating what has been found to be the most effective approach when dealing with a normal set of ENT issues. However, here in Smurfville, we don't do too well with normal.  Almost two years down the path, we are still dealing with regressions brought on by oh-so-very-memorable pain (to Sam at least) from previous surgeries and while recovering from a tonsillectomy in most kids takes anything from a couple of days to a couple of weeks and then they move on, Sam will embrace the pain, smother himself in it, make it a part of him and then quickly find a way to adapt to it as if it were going to be a permanent part of his life usually in the form of regression...sort of like when, after having his first attempted testicle repair requiring the testicle to be attached to a blood vessel for several months in the groin area, he associated the pain he felt when sitting with the actual action of sitting and more than 2 years later he still resists a sitting position even though the testicle was removed 6 months later.

 

So Sam's tonsils remain endearingly attached to his throat and while I truly appreciate all the advice and concern shared, I have to say that I am beyond relieved that we chose not to take them out as 2 days after the procedure Sam managed to catch a rather feisty tummy bug and spent the next few days displaying some very impressive projectile vomiting.

 

The weekend before this rather melodramatic episode we spent in Stilbaai celebrating Chris' 40th birthday with family. We have been really shameful on the photosnapping front and once again forgot to pack a camera in so unfortunately have few pics to share, including a poor phone-quality photo of Sam drinking his bottle along the way.  

 

 

 

Usually a 4 year old kid drinking a bottle would not be considered a blog-worthy share...unless it was a kid who, for more than 3 years, reacted to the touch of his bottle as if it was covered in layers of splintered glass which caused unimaginable pain every time his hands made contact with it. For the past few months (perhaps even longer) I have really persevered with getting Sam to hold his bottle, even at times resorting to simply placing the bottle in front of him and hoping that eventually I would be victorious in this particular battle of the wills and he would just take the bottle and drink.  But each attempt brought with it the same reaction, Sam would visibly cringe, throw his hands up in defense and then relentlessly sign "bottle" until I eventually gave it to him myself. When we celebrated Sam's 4th birthday on the 15th May (again forgetting to take pics) it would be fair to say the occasion brought with it a little sadness that we'd not achieved any new milestones over the last 12 months.  Exactly one week later, halfheartedly offering Sam his bottle, he simply took it out of my hands and drank.  Of course I squealed in excitement throwing Sam into his own sensory overload which landed up seeing the bottle thrown across the room.  But he took it again in his own two little hands after that anyway...and every time thereafter too. Travelling over a particularly bumpy section of road on the way to Stilbaai Meg still tried to take the bottle from Sam to help him but he absolutely refused. 



 

Coping more comfortably with heat than with cold, Sam struggles to leave the warm bed every morning and can sometimes spend up to an hour iPadding first before he makes his first move. Stilbaai's chilly mornings were no different :)

 

 

As I've mentioned, on the 15th May Samuel turned 4.  Scary stuff really.  What's even scarier is that he is weighing in at just under 15kg's at the moment and, with an increasingly healthy appetite, he seems to be picking up weight almost daily...or so my arms, back and neck tell me.  I'll definitely have to start encouraging him to use his walker more often, even on short trips to the shops and the like.  I have no doubt Sam will manage okay with this but having already received one or two disturbingly close to pitiful looks recently when strangers have seen him using his walker has made me a little uncomfortable.  Think I need to build a bridge....

 

We kept celebrations low-key for Sam's birthday and the morning of his actual birth day was spent at the docs attending to his burst eardrum.  Thankfully at our follow-up appointment with the ENT last Friday he advised that the eardrum was healing well and looking quite healthy again.  With just over 3 weeks between his birthday and the ENT procedure, I don't know how Sam tolerated the pain and discomfort caused by his perforated eardrum and all the gunk blocking up the ear on top of that.  Even more surprising is that in the period leading up to the ear issues, Sam's sleeping problems had steadily eased off and although we've certainly had one or two restless nights here and there, we're definitely in a much better place than we were a couple of months ago.  I'm not sure if it has anything to do with it #feignsinnocence but we decided to transition Sam to a bed a few weeks ago as his body bashing in the cot at night brought with it the added worry of him hurting himself.  The new bed is a bit bigger than the kiddie character starter beds you get, but still smaller than a standard single bed.  So to get Sam used to it first, we sandwiched his bed between the wall and our bed. Six months ago the 15cm height difference between the 2 beds would have been a major obstacle for Sam and enough of a barrier to keep him in his own bed. Heidi however has been building little crawling obstacle courses for Sam over the physio blocks, etc so it didn't take Sam long to figure he could simply crawl on into our bed and that's where he's been sleeping every night since. On the odd occasion when he would fall asleep in his own bed, by 10pm at the latest you'd get a little tap on the shoulder and he'd hand you his pillow and invite himself in. It being the middle of Winter here and Sam constantly kicking off his blanket, the arrangement works alright for now as it means I don't have to get up several times during the night to cover him up...and he is just so snuggable too.

 

I know I've left heaps of details out...somewhere in between all of the above the girls and I attended the Justin Bieber concert, which was a real treat for Meg as she has had to sacrifice too many outings, etc due to Sam's health and/or often unpredictable behaviour.  There was a visit to the orthopaed to follow up on Sam's feet (which we'll also be leaving surgery-free for yet a while longer-phew) and more recently a really lovely visit from one of the ladies from Iris House  and of course there have been exams, the start of the hockey season and various other events in between.  Right now though we have one more early morning left and then three weeks of just chilling during the school holidays (with the exception of therapies of course) and then we find ourselves in the second half of the year already.  My mid-year resolution (if we have to tolerate the increasingly popular Christmas-in-July fad, we can definitely do mid-year resolutions too) is to try and blog more often.  Don't hold me to it though :)

 

 

Random Pics :



 

A little bit of walker-jiving to Hi-5

Doc Paed suggested a 7,5ml dose of Aterax when leaving home already as a pre-med, which worked like an absolute charm. Sam was pretty calm by the time we got to the hospital on the morning of the 6th and we didn't land up with the same scenario as last surgery where he went into theatre with the last dose of pre-med still in his mouth.

 

It took about 45mins for Sam to completely recover from the anaesthetic (which 45 mins consisted of non-stop crying) but then he spotted Teletubbies on the hospital tele and was happy to share his cot with mom while watching.

 

xxx

A muchness of nothingness

Woo Hoo! A post! It's as much of a surprise to me as it is to you, believe me, what with the little smurf still recovering and all. Nope, not from his ENT procedure but from still being ill. Still? Yes! Still! I can't even remember how long it's been now since we last experienced the increasingly elusive state of (relative) good health. I think we're floating somewhere round five or six weeks already. I know Sam and I did a straight few weeks of not leaving the house once...not at all...not for a minute...not for a second. NADA. It was...uuhhh...interesting, for lack of a more blog-acceptable word.

We're still all snotty...and coughy...and tonsilly. "We" being Sam, although the fact that it effects our lives as much (although not in the same way) as Sam's, makes it a definite "We". I can tell you one thing we are NOT! And that is vomity! Want to know what makes that even more surprising? We are currently on Day 4 of an antibiotic. (Yes, another one).  Want to know how much of that antibiotic has been v-worded out? Not a drop...not a mil...not once....not at all. NADA. Why? Because for the first time in almost four years someone (who is always in-tune with Sam's sensory and v-word issues and generally goes by the name of Dr Paed) had the sense and expertise to prescripe an antibiotic for our little dude that comes in the form of a solutab. It dissolves instantly and has very little taste. At first, just to be safe, I camouflaged it in some yoghurt but yesterday simply mixed it in with his normal food and Sam polished it off without hesitation. Absolutely brilliant. #touchingwoodfrantically

And that's where we're at...which is nowhere at all really.  Dr Paed is uncertain whether, even though they're being a little troublesome lately, removing Sam's tonsils is a good idea at all.  Sam's really been struggling at night with this whole "floppy airway"' issue which many of his RTS siblings experience problems with.  Dr Paed is concerned that the tonsils are at least providing some sort of support at the moment, as warped a support as that may be, preventing the airways collapsing completely at night.  We've considered the option of doing a sleep study with painful care, but there is absolutely no way Sam will tolerate a sleep study right now. He barely tolerates me touching his face. CPAP's and the like are even less of an option.  So for now we trudge along, hoping that there might be some relief, in the way of no illness/germs, making its way to us some time in the near future.

Doing time...

...over the passed three weeks with a super feisty tummy virus x 2, a skew little foot x 1, skew septums x 2, consistently swollen set of tonsils x 1 and two very smurf-attached grommets has left considerably little time for blogging.

Well what do you know! If you lay it out all mathematical-like it almost makes all the recent blood, sweat and tears (and I do mean that literally) a little over-the-top. 

So first we had a rather gingerly visit from the tummy bug for a couple of days. Messed around fairly lightly with me but then moved on to a far more satisfying victim. Sam.  Wreaked a little havoc with Sam for a few days but then got bored so thought to its cruel self...hey, let's throw a little washed-out-mom-action in too. And, boy, did it floor me...for almost a day-and-a-half. And that's saying something for someone who was up washing bottles and cleaning house, adorned with gorgeously attractive nasal splints, less than twenty-four hours after my sinus surgery a while back. Then the darn thing eased off for a day or two from both Sam and I but then came back in with a vengeance for a second assault on little Sam's system as well. After a few days of even-more-than-usual throwing up and not eating, I took Sam off to the doc just to make sure there was no additional problems at play as well.  Turns out there was. He told me that Sam's ears were not looking too great and that his tonsils were very enlarged but, thankfully, not infected. I didn't worry too much about the tonsils because they are just "normally" enlarged but made an appointment with the ENT, especially as Sam has now taken to regularly bashing his ears with his fists.

Dr ENT confirmed that the grommet (tube) in Sam's left ear was pretty much free from the eardrum but was still sitting in the ear canal (where it still remains) and all he said about the right ear was "this is just not working at all".  He also said that Sam's right nasal passage is completely blocked due to a severely deviated septum (as a result of both genes and syndrome) and that his tonsils, although not infected, needed to come out because of their size.  Dr ENT was keen to do the surgery ASAP but because of an upcoming church camp this weekend, which we've been looking forward to for some time, we asked if we could hold off till round the 11th April.  However, the fact that Sam is extremely uncomfortable at the moment and only gets a relative amount of rest with the help of some Ibuprofen (which is so good for his tummy) we've decided to give the doc a call in the morning to chat about possibly doing it earlier, if still an option. 

From ears, throat and nose to some troubling little toes...which appear to have a mind of their own and are determined to keep that little left foot of Sam's a challenge.  We were hugely relieved last year when Dr Orthopaed advised that Sam would not be having his foot surgery mid-year after all as the foot seemed to be doing a considerable about of "straightening" all on its gorgeous little ownsome.  So we've been encouraging Sam to walk as much as possible (with his little walker of course) in the hope that lots of walking = more weight-bearing pressure = straighter foot. 

Because events over the passed (almost) four years have always run so smoothly and according-to-plan that a relatively normal outcome of this nature could be expected???

Instead of using the whole foot to balance, Sam is using just the front part (specifically the angulated big toe) to anchor and balance himself and in doing so is straining the inside foot muscles and completely neglecting the outside foot/leg muscles resulting in the foot returning to its orginal inward position.  Heidi suggested strapping the foot and leg for a few weeks with Kinesio Tape  which, at the time, sounded like a promising plan of action. We decided that a little Veet might be in order first as Sam has his fair share of hairy surfaces and decided to start applying the tape at the next physio session. On the way home from PT though I had vivid flashbacks of Sam sharing his entire stomach's contents with the pathology office at Vincent Pallotti last year after Doc Sinclair simply placed a tiny plaster over an equally tiny puncture wound after drawing some blood.  So contacted Dr Orthopaed instead to enquire whether an orthopaedic shoe/boot would not be an option instead. We have an appointment with him on 16 May for a re-evaluation of Sam's foot and to further discuss the way forward.  A little disappointing to be honest as I thought we'd pretty much conquered the foot issue :( and, be it a little different or not, it is such an adorable little foot.



Learner Drivers

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

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

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

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

Sammy and Oupa

Early Morning Grins

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

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

Walking, horses and toe-padding

So....



 

 

Sam has his walker *does really goofy-looking smurfy-dance *  (Mom, not Sam) Whoop Whoop!

 

And he is loving it. So much so that I took this awesome LITTLE video of him taking a stroll down the road with it. But after the video still not having uploaded after almost an hour, I had to conclude that the darn thing was not THAT little after all. Eish. Will try again. Sorry Lynn ;)

 

At least we have a pic.  We have adjusted the height of the walker somewhat which makes for a much more comfortable gait and way more confidence. At the moment, the wheels can only go straight, which we thought might be a good idea at first so as to avoid Sam having some rather damaging (to both himself and the household contents) bumper car episodes. But alas, the little dude is becoming very frustrated at not being able to go exactly where he wants to and so tries to lift the walker and shift it himself, which works okay some of the time but more often than not results in him overbalancing.  The great thing about the walker is that it has these little reverse brakes on the wheels so the wheels actually cannot roll backwards at all which means when Sam does lose his balance he simply grabs onto the walker and steadies himself quite well.  I was considering taking the walker with to our physio session this morning, just to show Heidi and have her confirm that the height and everything else was as it should be. However, we ran out of time (largely due to Sam's new morning ritual - more about that later) so I decided having to first negotiate fitting the walker into the car would just make us even more late. From next week though I will make sure we have enough time to pack the walker in as when walking with the physio's trolley, Sam lost his balance, immediately grabbed the trolley to regain it and instead landed up toppling backwards as well as pulling the trolley over his little feet in the process. 

 

Overall, having the walker is such a blessing. It is going to be so beneficial to Sam.  I really can't believe I had developed such a mental aversion to it. And it's an extra blessing that, Sam being Sam, he has become so comfortable with it so quickly, as opposed to shoving it into one of his sensory no-no's along with sitting, holding his own bottle, lying on the floor, hairdryers, vacuums, balloons, etc. . I will most definitely take another video ASAP...just perhaps a little shorter...and post it :)

 

Sam and Meg had another riding session on Saturday morning. This time Sam rode with Elbie. Oh, he is LUVIN' all the attention from the girls, little charmer. And the colour-coded hats was purely coincidental by the way.  The weather played along beautifully, pleasantly warm with loads of clouds to avoid having to stress about sun exposure.  Yet again, Sam adored his time at Haven of Hope. And, an unexpected advantage, having to run alongside the horses to keep up is providing mom and dad with some much needed exercise. 

 

Yet another love affair developing...while Aunty Cheryl kept checking in to make sure her baby was doing okay. What an amazing group of ladies at Haven of Hope. Love you guys xxx

 

 

Meg feeling a lot more comfortable on Knight and even managed a little independent riding towards the end of the morning.

 

So, Sam's new morning ritual?  As you all know by now, Sam's still-not-resolved sleeping issues usually result in me putting him in our bed (Ja Ja! Co-sleeping is bad) to a)avoid him shattering the bones in his hands and arms with the sheer force by which he slams them into the side of his cot and b) in a feeble attempt to try and get something remotely resembling sleep myself. Which means that every morning Sam wakes up in our bed and insists on being delicately transitioned into the new day with some cuddles and then some i-padding before having to get up and face the big bad world.  And, even more entertaining is that he's taking to i-padding with his toes.  Because being somewhat "different" is not enough...he HAS to go the whole hog. 

 



 

 

 

Back to *BLESSINGS* (Okay. So the "flow" of my posts needs a little work lately. Hehe)

 



Both Sam's physiotherapy costs for the entire year and the cost of the walker have been gifted to Samuel by members of our families.  As you can imagine both these costs are substantial.  There are no words which can adequately express our gratitude and appreciation  (you know who you are xxx). The best we can offer is a heartfelt and emotional THANK YOU at lifting such a heavy burden from our shoulders. Does the Lord not work in truly wonderful ways? xxx

Sammy Singing a Lovely Song

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

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

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

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

Aunty Marili and Sam's friend Antoni xxx

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

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

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

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

Need I say more? 

xxx

Uncertain...

...of my emotions about tomorrow. 

Over the last few weeks I've been on a mission to find Sam a walker.  What an experience...an incredibly frustrating one.  Particularly when you realise that some companies are quite at peace with taking advantage of your near-desperate quest to benefit their own financial gain.  The last quote we had was an amount of R34,500.  I could only laugh....what do you even say to that?  Sure! What the heck, I'll take seven...a different colour for each day of the week. Eish!

Last Thursday Brampies took a picture of the walker we've been looking at to a company he remembered manufacturing medical equipment. This company in turn referred him to another company, quite close to home. Sam and I then went in on Friday morning (on the way back from his opthalmology appointment - which got a thumbs-up) and found the staff wonderfully helpful.  They assured us they would do their best to try and find, at the very least, something similar to the Trekker or even modify one of their current walkers (mostly for adults) to accommodate Sam.  I just received a call from Maryna from Medical Solutions to say they've managed to bring a walker down to Cape Town which they think would be suitable for Sam...and asked if we'll come in to "fit" it tomorrow.

Every time I picture Sam in a walker, I get butterflies in my stomach...which butterflies seem to have an invisible string attached to my tear ducts which then go into super-overflow. I know I've blogged about this before and for a good reason - I just can't seem to move past it.  Who knows why? I have such an emotional block about this silly walker. I know Sam NEEDS to be more mobile - for all sorts of reasons : development, independence, medical (those little knees)...even physically, so that those little calf muscles can work on becoming as solid and muscular as his awesome little thighs (or "hams" as Chris calls them).  So - common sense (what little I have) sends a message to my brain saying "WALKER = GOOD THING". And then...right outa nowhere...my heart butts in, slamdunks a "WALKER =  HEARTSORE"...knocking my common sense message right outa play.  

So it's going to be a really interesting shopping trip tomorrow ;)

Praise The Lord - There's always something good to share though, isn't there? Sam has had his Buzz Lightyear ride-on since he was about 18months old.  Since his sensory/anxiety issues went South almost 2 years ago, he seldom sits on it and when he does, he is doubled over in pure fear. The same goes for the little rocking horse you can see in the photo background.  On Tuesday morning he was kneeling on the floor playing with the horse and asked to sit on it.  For the first few minutes, I held him around his trunk as I usually do, while rocking Sam, the horse and myself.  Excruciating cramps in my calf muscles eventually meant I had to stand up for a short while to relieve the pain...and would you know, the little dude was quite calm.  I then sat on the floor next to him for a while and it was a good few minutes before he asked to come off.  I waited a while and then thought I'd try the Buzz Lightyear car.  "Joy!" screamed my heart... AND my aching back. Again Sam was quite calm and happy to sit unsupported. Progress is progress, no matter how small or "every day" it might seem to some. 

So adore this little boy - my heart wants to explode with love when I look at him xxx



And too for my little Mommy 2IC (posing with her Academic Merit Award and Badge she received for her 2012 final grades).  Chris and I ventured out for a (very) short while last night in I-honestly-don't-know how long.  Sam was apparently relatively okay until he spotted a video of me on his iPad, then became quite distressed and started crying. Meg picked him up and walked around the house with him singing Twinkle Twinkle Little Star until he was feeling better. She also helped Brampies change his nappy. 

She's such a good girl and Sam knows it too - he rocked himself to sleep earlier, clutching a photo of her to his chest. 

xox

Sam performing Twinkle Twinkle Little Star

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

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

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

Little Emma desperately needs your prayers

Below is a link to a page from the Little Fighters Cancer Trust, written by a Mom who has watched her little girl courageously fight the cancer that has ravaged her body so many times over the last few years.  We've heard that Emma has taken a turn for the worse - she is in desperate need of prayer and, really, a miracle.  Please take a few minutes to read Emma's Story and, gosh, shut your eyes for the mere five seconds it'll take to say "Dear Lord, please heal Emma"

Thank you xxx

Emma (left)

Great Expectations

So, in prepping for the upcoming year, I sat down with Meghan and chatted to her about what we expect from her this year...good grades, more responsibility regarding tidyness and helping around the home...you know, the same things we've been "discussing" for the last four years or so. Of course Meghan took the conversation very seriously....for about the two minutes it took her to reach the front door so she could happily resume the bicycle & hula hoop races, hand tennis games, treehouse building, archery competitions and the like which have kept her and her neighbourhood friends entertained literally from sunrise till sunset, almost every day of the holidays when we were at home. 

Yip...this sure looks like a kid who's snapped out of holiday mode

Then I sat down with Samuel and shared our expectations for him for the next eleven months. There were no biggies, just a few minor things like learning to either hold his own bottle (Oh, yes please!) or at least a sippy cup...AND.....learning to walk. Now that we've mentally prepared ourselves for these events, we've gone full steam ahead into the necessary "training" required for both of these conquests.

So the sippy cup task is going well! Sam's aversion to holding his own bottle is just so completely mindblowing.  I've discussed the matter at length with all three of his therapists but no-one can really say for certain what the problem is.  There is definitely a major sensory element involved as he's on the verge of gagging if I try and place his hands on the bottle.  There's also a co-ordination and a simple physical ability element involved as Sam cannot grasp the bottle securely in one hand with his little thumb but still mostly neglects using his right hand unless you remind him that it's there when you see him battling to do something with just his left hand. While he seemed relatively willing to touch the sippy cup, albeit quite gingerly, he would not allow me to put the spout anywhere near his mouth.  There was a time when I could squirt little sips of juice, etc into his mouth from a squeeze bottle but he's also stopped tolerating that.  So....perhaps it will be easier for me to learn to deal with the awkwardness of having strangers look on with confused and (too often) disapproving faces at me bottle-feeding my almost 4 year old son.    

With Brampies having moved out at the end of last year, working through each day's chores has become quite challenging so it's been wonderful to have Meghan helping out with Sam where she can. 



Don't worry - he's face looks like that when I feed him too...LOL

Sam has become delightfully brave at attempting new textures with regards to food. Of course there has to be at least a one-step-forward-one-step-backwards balance with Sam, so he's not too keen on the squeeze bottles anymore but while reclining comfortably against me while I sat eating my supper one evening, a little hand reached in under my arm and helped himself to some of the food off my plate. The very next evening Sam sat at the counter while I grated some cheese and after I pushed the plate out of my way and, unintentionally, within his grasp Sam helped himself to a handful of cheese as well.  Unfortunately though Sam eats extremely slowly so when we're reaching the forty-five minute mark on a "solid food" meal, I resort to pureed food rather just to make sure he's getting enough nutrition. 

I am so excited about Sam's signing at the moment...although he first had me a little worried.  I've tried to teach him the signs for the things I feel he would most need to communicate to me...like "more" which he picked up a while ago, "bottle" (although it's a Sammified version of bottle as with many of Sam's signs and I am not sure anyone outside of our home would know what he's indicating) and most recently, "sore".  Now "sore" and "more" not only sound the same when verbalised but have really similar signs too.  Sam easily copied "sore" the moment I showed him but then started using it for "more" as well. Typical, I thought, not only did I NOT teach him "sore", I've now confused his "more" as well. 

"Sore"

 

"More"

 

 

Sam, however, painfully reassured me that he had in fact mastered "sore" when he knelt next to me while I packed his toybox away one afternoon and just as I closed the lid, stuck his hand in and got his little finger caught. While crying hysterically, he frantically signed "sore" over and over.  Not the most charming way of having to find out but it certainly made me realise that I still tend to underestimate our little smurfy dude sometimes.  I am loving that he can tell me whenever he wants a bottle, even though he seems to be having so many more bottles a day than he used to...I can hardly tell him "No" when I am trying to show him that signing will help him get across what he wants.  Which makes it quite difficult to decide how to react when I put him into bed at night and each night brings with it a new "ailment" as Sam protests unhappily while signing "sore" and then points to his teeth...or tummy...or knee. Ai!

The Sammified version of "cry" - we are often ordered to cry for Samuel's amusement, especially Meghan in her most melodramatic manner. And often, while he is crying, Sam will passionately sign "cry" just to avoid any misunderstanding that he is, in fact, crying.

 

As you can see in the above pics, Sam's had another vomit-inducing, shriek-yielding haircut during which he emptied his entire evening's sustenance, including his Faverin, pretty much over everything within a 5m radius...which would include me, as usual. And that is not good.  I've completely stopped Sam's Melatonin as it was just making no difference whatsoever to Sam's sleeping and was not worth the trouble it took to get into his system.  The Faverin, however, has proved hugely successful so I take great pains to ensure Sam gets it each day...and keeps it in.

 

    

Random Pics :

Happiness

Fun

 



Awesome evening walks (Stilbaai)

Desperately Seeking my Mojo

Smurfy wishes for an awesome 2013 everyone :)

I seem to have misplaced my blogging mojo a few weeks ago. It's quite possible it got washed out with the litres-upon-litres of vomit (bleghhh) we were shovelling four to five times a day towards mid-December, when Sam struggled through possibly one of his most health-challenged periods. After 9 days of unbreakable fever, no eating, loads of slime, coughing, croup and of course the relentless v-wording it felt like we'd never see a healthy Sam again. 

Needless to say, this trial too passed and Sam was healthy enough for us to go spend a few days in Stilbaai with family. 

While Sam was sick, the only activity which seemed to keep him calm and comfortable was "going ta-ta" so at least once a day, after he'd gesture towards the garage waving his little hand eagerly, we'd take Sam for a no-destination drive.  Thankfully the "ta-ta bug" was still biting on the way to Stilbaai so Sam had no trouble enduring the lengthy 4 hour drive. 

Sam's been prone to lovely 2hr-long afternoon naps lately and with Dad being on holiday too, he eagerly took advantage

Meg and Chrisna waiting for the 2hr-long nap to end so that they don't have to be on noise restrictions any longer

Sam loving the 3-way chair enjoyed by his uncles and cousins over the last 35 years (Yes, really). Sam's Buzz Lightyear car had to of course be brought with, along with several other toys and favourite dvd's, to keep Sam's environment as familiar as possible.

On Friday afternoon we drove out to Sam's cousins, Cayla and Dewald, in George.

Sam was keen to join them in the pool but settled instead for some sideline flapping which left him just as wet anyway

Both Dewald and Cayla insisted on giving Sam one of each of their toys.  From Dewald Sam got this really awesome light making, noise emitting, vibration yielding object. 

And from Cayla, one of her babies :) to keep Sam company along the 2hr drive back to Stilbaai, along which Sam finally lost his "ta-ta bug"

For the first time in a long time, Sam had a really good night's sleep on Friday night.

Which meant we could hit the beach before 8am already to avoid both the extensive crowds and sweltering heat

All beached out and ready for breakfast in his Smurfy towel

Sam slept really well on Saturday and Sunday evenings, waking just before 10am yesterday morning. He was so keen to see the New Year in though that he was awake from just after 12am till just before 5am this morning...but is making up for it by still laying fast asleep right now.

Enjoy your New Year's celebrations everyone....here's hoping I stumble across that darn blogging mojo soon xxx