Post Op : Day 2

Today started off hot and sticky (and not only because of the daily temps hanging around the high 30's) at about 2am with me trying to give a super sleepy smurf some painmeds. On Friday evening, because he'd had the local anaesthetic into the wound and an additional suppository in the late afternoon, I opted to let Sam sleep through instead of trying to wake him to give him something for pain. So when he woke up yesterday morning, it was without the benefit of any painmeds and he cried bitterly for close to an hour (as mentioned in yesterday's post) as it took me a while to calm him down enough to get him to swallow something. While suppositories are obviously much more effective, we are usually quite lucky to manage two or three before he starts flatly refusing them by screaming and fighting when we try and we definitely don't want him squirming and struggling at the moment, so we try and reserve the suppositories for the more needy times like at night.

I decided that I would give Sam something during the night so that he didn't wake up to such intense pain again and when he started whining, around 2am, every time he shifted position I knew his meds were already starting to wear off. It would have been wonderful for me to be able to wake little smurf up to explain to him why I was going to be squirting some vile tasting stuff into his mouth at such an horrendous hour, but obviously this is not the case (although I do still find myself explaining and reasoning with him...you know, just in case). Now, take into consideration the already challenging swallow issues due to how attached Sam becomes to the medication, food or whatever that gets put into his mouth and finds it, like quite a few of his RTS brothers and sisters, quite difficult to have to part with said medication, food or whatever....and add to it the even more entertaining challenge of doing it while Sam is not quite awake! Again it took close to an hour to administer the meds but this time not because he was crying, because he kept going off to sleep with a mouthful of particularly sticky liquid which would inevitably land up dribbling out of his mouth.  It is really quite amazing how he does not have the natural reflex to swallow...even if I put something right at the back of his tongue...almost in his throat, he still quite often sort of forgets to swallow. There have been moments when I've been feeding him and I'll give him a spoon of food and, in the hope that another offered spoonful will initiate some swallowing, put another to his mouth but instead he will simply open his mouth to accept the next mouthful...and then inevitably gag. Even as I sit typing this I find myself swallowing continuously just thinking about how irritating it could be.

Tonight we have administered the suppository as late as possible. Hopefully it will see Sam through till about 6am when I can rather wake him with a bottle and then give some more pain meds. For the most part Sam is still being quite cautious about what he does, although I can see he is becoming more and more frustrated at just lying down or sitting still. He did try crawling a little on the bed this afternoon during the hour it took for us to try and get him to take a nap (which nap then lasted a glorious two hours) but although he was quite happy to be on all fours, he moved very slowly and carefully and after flinching a couple of times when he must have hurt himself a little, he quite willingly opted to rather lie down again.

We've had one or two vomit episodes today and I am not entirely sure what it might have been caused by. Sam's temp was up again a bit so perhaps the viral tummy bug he had right up until Thursday evening is still hovering around. Perhaps it's just the painmeds playing havoc on his stomach. Or it could well be due to the fact that he hasn't had a bowel movement since Thursday and that, as many of you already know, can be a major aggravation where reflux and digestive issues are concerned. I have upped Sam's Movicol dosage for a while but am not too sure how helpful this will be as there could well be another cause for the absent bowel movement....it's just a little more funny - and that is that Sam sort of has a usual BM-passing "stance" and it's almost always when he's on all fours...and with him currently not being able to "assume the position" he might just be resisting the urge. Yes, that certainly does smack of smurf - he does so like sticking to his "normals". So tomorrow we are definitely going to be doing some crawling around I think, as long as I time it nicely after a dose of painmeds, and with any luck we'll have sorted that one out.

Just for a bit of change I put Sam in his swing with a cushion positioned strategically underneath to prevent him from his usual, fairly wild, swinging. He seemed quite comfortable and painfree so eventually he was even allowed some actual swinging (if I remember correctly, he was actually holding in a mouthful of veggies at the time).
 

With Sam's hygiene routine relying solely on bed baths at the moment, his hair is starting to look a little funky. I do what I can with a sponge on that mop, but it's obviously not as effective as the real thing. Having had to resort to the same thing last time, I had every intention of simply shaving Sam's head the evening before the operation but then, with his being ill at the time, decided not to.

Sam's favourite activity at the moment...his iPad. In fact, most days we have to hide the iPad every now and again so that we can move through the house without his inevitable protesting when he spots it and we aren't able to play. The fact that he has taken to kissing the screen of the iPad (with or without a mouthful of something) and has also become quite skilled at choosing what activity he wants to do (which sometimes includes drafting gibberish emails, deleting and/or taking photo's, etc) we try and make sure that he is never alone with the iPad anymore. And, certainly not the least important factor, for some extremely odd reason when Samuel is finished playing with something (whether it be a book, toy or yes, even the iPad) he has to throw it down instead of simply setting it aside.

But hey, if it wasn't a little "odd"...it just wouldn't be smurf.

Post Op : Day 1

After Sam's throwing up episode on Thursday evening I was convinced I'd made the wrong decision about having him undergo surgery on Friday morning. I pictured myself having to phone the hospital at 6am to ask that they inform the three doctors involved in his procedures that we would have to cancel. With Sam being scheduled to go into theatre at 8am and this then being the third time we'd be postponing, I imagined they'd be understandably irritated. But with there being little else for me to do until then, I gave Sam another Zafron Wafer and got him back to sleep. With all Sam's other surgeries, I usually wake him up at about 1am the morning of the surgery to give him a bottle as, as you all probably know, he can have no milk or solids for six hours before he goes under. By 1am on Friday morning there'd been no further incidents of vomiting or cramping and, in fact, Sam seemed quite peaceful. Leaning on the faith that God had heard all the prayers been said for Sam and for him to be well enough for Friday, I got up to make his bottle....pretty much pointlessly though as I could not wake him up enough to actually drink it. At 5am and after several more hours of peaceful sleep (on Sam and Chris's side that is) I prepared our things to leave and made one last (and again pointless) attempt to give Sam first some milkless tea and then apple juice. And then we were on our way to the hospital, still feeling a little amazed that we hadn't had to postpone.

There was a fleeting panicky moment or two in the ward when I was first told that Sam was in fact scheduled to have the teste brought down and not removed, as I'd arranged with Dr J. and then when I overheard another nurse telling her colleague that Sam was having a bladder-lift. Thankfully we had one quick chance to just confirm with the urologist that the testicle was being completely removed. Sam was a perfect angel while waiting in the ward to go up to theatre, full of smiles for everyone and not nearly as agitated as he usually is at even just the sight of a hospital cot or nurse. The only two minor challenges we had was that, firstly, he absolutely refused to swallow his pre-meds and kept it in his mouth all the way up from the ward to the theatre where he eventually swallowed (he once kept food in this mouth for almost 20 minutes before swallowing, although by then it wasn't food anymore...just coloured saliva). And then when they put the mask over his face he got agitated for a couple of seconds, also quite understandably.

Dr J advised that the three procedures would take about an hour-and-a-half, but one hour and five minutes later the anaesthetist came out to advise that they were finished and Sam was already in recovery. There was some bleeding from the wound which the nurses were instructed to keep an eye on and Sam had apparently required a little oxygen in recovery, but other than that there were no considerable hiccups. Sam reacted when stimulated, but otherwise slept for two solid hours afterwards. He woke up just a little disorientated and miserable, but within minutes was happily iPadding and quickly and thirstily drank his bottle, followed by some Kit-Kat. After he'd had his bottle and made a wee, his drip was removed and Dr J came in to check on Sam and confirm that he could go home. He also told us that opting to remove the testicle was the best decision we could have made as the testicle was so high up, he doubted whether he would have been able to successfully place it into Sam's scrotum.

Sam had had a local anaesthetic injected into the actual wound while still in surgery, as well as some oral painkillers in the ward so by the time we were on our way home, he was good and solid painfree. Once at home we tried to keep him as still as possible, knowing that eventually that local anaesthetic would wear off...which it did, at 3:45am this morning.

As with most of our RTS sweeties, Sam has a pretty high pain threshold but last night could well have been the first time I have known him to cry so heartbreakingly with pain. Even just slight movements set him off. So we quickly gave him a suppository and eventually, about an hour later (round 5am) he drifted off to sleep again....and was awake, bright-eyed and bushy-tailed at 6! He is a whole lot more wary today of how he moves around and is, very surprisingly, quite content to lie on our laps, be pushed around in his pram or to lie on the bed...

Taking a nap in his pram. Sam has a thing lately about sleeping with his face covered, in this case by both his chew blankey and a book (despite the 30-something degree temperature outside)

Chocolate pudding...always a reason to smile

then nicely transferred onto his chew-blankey (for future flavour, I presume?) before I could get to wipe his face (a business opportunity perhaps?)

Lying on the bed with Dad (where he has now fallen asleep...or should I say....where THEY have fallen asleep). While Sam happily kicks away with his left leg, he's quite careful to keep the right one still.

Even though the procedure carried out in August, from a surgical point of view, was far more traumatic and agressive than yesterday, Sam's pain seems to be a little more intense. However, everything else about yesterday's surgery just went so much more smoother and comfortably than in August, even with Sam's tummy bug and the last minute threat and resulting uncertainty of possibly needing to cancel. I am so relieved and super-thrilled that I decided to rather go ahead and get the surgery over with. And I think I know why I was able to do this.

On Thursday I was really stressed about which was the best option for Sam. Postpone or go ahead? I looked to everyone else to help me decide what to do and when Dr S himself seemed a little unsure on Thursday morning about what was the best way forward, I lost even more confidence in my being able to make the best decision for Sam. After posting on FB on Thursday that Sam had a tummy bug and there was a really good chance we were going to have to postpone again, I received the usual amount of encouraging messages and sentiments from my family...with there being one across-the-board sentiment - to have faith. Moments before sending Dr S the message, detailing how Sam had been through the course of the afternoon (as mentioned in my previous post) I took a moment to discuss the matter with the most important Being I had neglected to seek guidance from and asked that He help me in the right direction. The text I received back from Dr S, even after my rather lengthy, detailed, mom-losing-it-to-paranoia message,was a simple two-word instruction..."Do It".

And so we did.

A quick update on our bathing saga : after my last post I decided to just persevere with getting Sam into the bath so for two nights, although it took a fair amount of time, I patiently tried...and re-tried...and tried some more until I eventually managed to get Sam sitting. There were moments of hairpulling, neck-clutching, skin pinching panic...from both sides! Just kidding! Of course just from Sam's side! And one near-accident when the mat I was twisting and contortioning on suddenly slipped, but after a moment or two's uncertainty, Sam would start his usual sing-songing bath routine as if he'd been placed calmly and happily there. Tonight, low and behold, he went in with about half a second's hesitation! Woo Hoo...bathing fears conquered...just hours before we're about to subject him to another traumatising surgery, which will leave him bathless for a couple of weeks and we'll be right back at square one. *Sigh*

We almost didn't get the go-ahead for Sam's surgery tomorrow. I mentioned in my last post that Meg was down with a pretty potent stomach bug and that I was a little worried that Sam might catch it. I was quite firm about Meg staying pretty isolated in her room, at least until yesterday when she was feeling well enough to go to school. Last night, at about 9:20pm Sam started throwing up and carried on until the early hours of this morning. By about 5:00am I had almost decided that actually going in to Dr S to have him check Sam out for sugery was nothing more than a waste of time. But by 8:30am this morning Sam had managed to keep in the better part of his bottle as well as a little bit of porridge so off we went to see Dr S. Dr S was initially also fairly unsure about whether Sam would be okay for surgery, but by the end of our consult he felt that we should give Sam a few more hours before cancelling, with the help of some Zafron Wafers and Stopayne for the cramping. Sam had one or two gag episodes in the afternoon, possibly due to his swollen glands and slightly red throat but there was no vomiting and although he was battling a little with his bottles, he was mostly finishing them. So just after 3pm it was decided that we would not cancel tomorrow's op.

At the risk of sounding a little prone to MBPS (Munchausen by Proxy Syndrome) I have been quite desperate for Sam to undergo the orchidectory, not because the fact that he's having his fourth surgery in just a mere 19months doesn't bother me (because it does - a whole lot) but, as I've often shared, I have a feeling that some of his SPD could be related to the sensitivity or just plain discomfort of where that right testicle is sitting. Having said that, though, I would detest to make the process even more traumatic for Fearful Smurf by having him try to recover from both the surgery and the nauseau and tummy cramps associated with the tummy virus at the same time.

Thankfully Sam does seem a little more comfortable than he was this time last night (and just as I typed this line he started crying, probably due to his having just vomited in his cot - oh dear, Murph, gimme a break why don't you). So a quick ending to go clean up some puke! Yay!

Bathing Bloopers

I never imagined bathtime could be such an incredible source of entertainment. On Friday evening we tried out Plan A which was that I would put Sam in the bath with me then, once Sam had enjoyed some bathtime playing and had been washed, Chris would take him out and dress him. Within minutes I was silently  "Whoop Whooping" to myself as, after not a moment's hesitation to get into the bath, Sam lay back, super-relaxed kicking and sing-songing away to himself while he played with his foam numbers. Ahh...the sweet joy of success. And then Chris came to take Sam out to dry and dress him and Sam screamed BLUE murder....literally - he turned blue from all his screaming. So...on to Plan B.

On Saturday evening Chris got into the bath with Sam. Although taking Sam out at the end of the bath was pretty uneventful, Sam refused to sit down in the water. So Chris ended up having to hold him upright while I washed him...which is just about as effective and successful as Chris simply holding him over the bath like we found ourselves doing last week.

On to Plan C : last night we tried Plan A again with a slight modification. Instead of Chris taking Sam out of the bath and, obviously the problem, away from me...I would try and get both Sam and I out of the bath at the same time. It would of course prove a logistical nightmare with me having to hold onto Sam while lifting us both out of the bath. Still, I thought it was worth a shot and had the bath been a little shallower, Sam been a little smaller, me been a little stronger and ever-so-slightly more like Mr Fantastic from the Fantastic Four, Plan C could well have worked. Unfortunately it was just plain ol' me, Sam and our thirty-something year old, metre deep bath (well at least that's what it felt like). So after an almost dislocated shoulder and knee, it was decided that Plan C is not do-able either.

If it wasn't so frustrating it would be unbelievably hilarious! What am I saying? It's still hilarious! Especially last night's episode. So...on to Plan D tonight which is a plain and simple shower for me and Sam. We've done it before, we know it works and, although it means that Sam has to skip out on his playtime in the bath, it's the best we can do for now. In any case, if all goes well and Sam's surgery goes ahead on Friday we'll be doing about two weeks of "bed baths" regardless of sensory issues. There's always a Plan E....

Which in our case would be the BAD method! Just kidding!

Speaking of surgery...in an already unsure mind as to whether Sam will be good to go for Friday because of his fairly congested nose and up-and-down temp again over the past couple of days (high enough for me to have to give him some meds on Saturday and yesterday) Meg, unintentionally of course, has us even more concerned as she is in bed today with a stomach bug. Keeping her mostly confined to her bedroom is not proving to be too much of a challenge as she's feeling quite miserable and is quite happy to just lie in her bed...so my plan to tape up her doorway and feed her her meals from outside the house, through her bedroom window might not be necessary after all. Which is really quite a pity as I imagine it would have caused quite a stir with the neighbours.

In closing, some random pics (some already seen by my FB friends) :

Who needs those R299 "crawling buddies" from Toys R Us when you have a Meg

(when she's healthy of course)

Conquering SPD

I have mentioned several times on this blog just how challenging I find dealing with Sam's Sensory Processing Disorder and have even stated the extreme on occasion...that sometimes I find the SPD more debilitating than his RTS. Naturally the more extreme statements are usually made after a particularly difficult incident or phase, but nevertheless I have no doubt that SPD on it's own, without any other additional diagnosis or condition, could handicap a child severely enough to cause major neurological delays and social complexity. With Sam's SPD going through erratic changes, almost on a daily basis, I have been trying to read up as much on the condition as I can in the the hope that I might just discover a course of action we might have overlooked or any other useful piece of information that might prove helpful. I have read many accounts of what it feels like to have SPD, some of which report that having SPD is like :

• having a whisper sound like yelling
• feeling like your clothes are all made of fibreglass
• being in a moving car of which you have no control with none of the equipment working properly
• not being able to sense your body's position in the space around you or as one person put it "You felt like someone had given you a shot of Novocain in your backside so you couldn't feel if you were sitting in the middle of your chair or the edge and you fell off"
• You could see obstacles in your way, but you could not make your body move the direction you wanted it to to avoid them.
• You tried to drink a cup of water from a paper cup, only you couldn't tell how hard to squeeze it to hold onto it. So, you squeezed it too hard and the water spilled all over you. The next time you didn't squeeze it hard enough and it fell right through your hands and onto the floor.
• Every time you tried to write with your pencil, it broke because you pushed too hard.
• The different smells in a room can make you utterly nauseous.
• You can't focus your eyes on any one thing because everything and everyone in the room catches your attention and your eyes just go there instead.
• The lights are always so bright you have to squint. In fact, one dad said that his daughter's SPD was so severe that if sunlight touched her she would scream as if in pain.
• Every time someone touches you, it feels like they are rubbing sandpaper on your skin. 
• The tag in the back of your shirt makes you feel as uncomfortable as you would if a spider was crawling on you and you couldn't get him off.
• You wanted to write something down but it took you at least 5 seconds to form each letter. You can see the letter in your head, but your hand will not go in the right direction to write it.
• Having constant motion sickness

Unfortunately there were no new methods of treatment waiting to be discovered by my eager eye, just the usual advice to seek the help of an occupational therapist. The thing is that we've being doing pretty extensive OT for almost exactly a year now and, to be honest, just finding our way back to our original starting block a year ago would be an improvement right now. I have to confess though that about a week or so ago I got so fed up with our, seemingly useless, sensory brushing that I half convinced myself (okay...maybe a little bit more than half) that the sensory brushing was perhaps doing more damage than good. I even found myself trying to replay those first few instructive OT sessions over in my head in case I'd perhaps, in the interim, managed to completely hash the whole process up and was now making Sam more defensive by incorrectly brushing him. I had two fairly convincing reasons encouraging my wayward thinking though with the first being a rather embarrasing situation at Meghan's school one afternoon when I decided to take Sam out of his carseat to sit upfront with me while we waited the half hour until the school bell rang. I agonised over the decision a good few minutes knowing that trying to sit Sam on your lap in a car lately is usually taboo (which isn't all bad because it acts as a built-in safety mechanism ensuring that he is always in his carseat) but was pretty confident that if I moved slowly and carefully enough he would be okay. So, in clear view of all the other cars parked at the school (largely due to the overly cautious and timeous moms the first week of school usually brings with it) I lifted Sam from his carseat in the back and tried to get back into the car on the driver's side. It is at times like this when referring to sensory defensivenes seems so much less appropriate than simply calling it blind fear. Sam clung onto my neck and hair and ears and any other part of me he could claw onto as if the dashboard and steering wheel had suddenly grown a giant set of gorging, hideous jaws and were trying to devour him alive. I persisted for about five minutes but by then Sam had not eased up so I decided to rather put him back into his carseat...noting rather anxiously that the carpark had filled up even more.

What do you think the chances were that Sam was going to be placed calmly back into his carseat? All I did was make a slight movement towards the open car door and off Sam went, into his sensory bermuda triangle where all things rational seem to disappear. I made a few more desperate attempts to lower Sam in but he just became more and more distressed. And there I stood. I resigned myself to the fact that I would have to wait a good twenty minutes out in the sun until Meg finally came out and then would have her get into the back of the car first and try from there to cajole Sam into his seat, which has actually worked before. My last attempt at trying to end the very entertaining show I was providing for the other parents, was to put on Sam's little portable dvd player which, thankfully, had a Barney Sing 'n Dance dvd in and, after having to dance outside the car for a couple of minutes first, tried to "dance" Sam into his carseat. There proved to be some logistical obstacles...but low and behold, it eventually worked (with a total of about four minutes remaining before the school bell went anyway). And yes, I have resumed Sam's  (be it correct or not) brushing.

As if that wasn't unsettling enough, exactly five nights ago Samuel started freezing up when I tried to put him into the bath. Washing his hair in the bath has always been a bit of a challenge, more specifically the motion of lying him down in the bath and then, which seems to be the most distressing for him, sitting him back up again. While hair washing has always been carried out with a degree of resistance from Sam, his love for bathing and being in water always seems to prevail. Or rather, used to. Try as I might, I could not get Sam to sit in the bath on Sunday night. He clung to me as if I was trying to hurl him over the edge of an unimaginably steep cliff. After several minutes I gave in the towel (figuratively speaking) and just sponged Sam down while Chris held him over the bath of water. And, with the exception of one evening when we tried almost wrestling Sam into the bath but then had to take him out just seconds after as he was so upset, that's how we've had to bath him every night since. It is such a shame having to give up Sam's bath time...that was our little reassurance at the end of each day as Sam played carefree with his foam numbers (to the sound of the constantly running tap, of course) that, no matter how trying the previous 24hours had been, we got to give it another go the next day. Who would have imagined a simple bath could mean so much? (I seriously have to get out more).

I am so completely lost and out of my depth with this sensory thing. It is killing me emotionally watching him spasm in pure fear at doing things which the rest of us do without a second's consideration. I FB'd our little RTS group recently and asked advice from the other moms and Sam is certainly not unique with his SPD. Patience seems to be the key. Evidently that set of keys has also been lost in a Bermuda Triangle somewhere.

Grumpy Smurf

By Saturday afternoon, Sam seemed to be feeling quite noticeably better. His eating and sleeping hadn't quite returned to normal (whatever that may be) but he seemed a little less fussy and thoroughly enjoyed his first swim of the year. We made sure to keep his shades on all the time, with great difficulty of course, because the Atropine (used to dilate his pupils in anticipation of the glaucoma examination) has still not completely worn off. It's really quite odd and the first time it's happened, but each eye seems to be returning to normal at it's own pace. The right eye's pupil is pretty normal, while the left still seems to be quite dilated. It's really quite freaky to look at.

Ooohhh...that little tongue, which is seldom actually inside Sam's mouth.

Err.....define "kiddies"pool again, Dad!

Sam gloating after I tried to take him out but quickly returned him to his little turtley-pool after he screamed blue murder! Cheeky smurf :)

I honestly have no clue what Meghan was doing here, not sure she has either. She did mumble something about a somersault at the time. A somersault? Boy, things really have changed....in the good ol' days a somersault looked more like a turning-head-over-heels movement than a.....??? Well, what she's doing..LOL

By Sunday Sam was eating as per (his) normal again and had a really good night's sleep as well, with me only having to get up about five times as opposed to the usual twenty-something...and it was mostly to reposition him after he somehow managed to land up with his legs and bottom perched on the wedge in his cot and his head at the bottom. Definitely not the most reflux-friendly sleeping position. Monday morning started super-positive that Sam is definitely on the mend which obviously means that next Friday's surgery date is sure to be achievable. And it just got better...on Monday afternoon Sam slept for a whopping THREE HOURS! He ate every bowl of food (all 150mls of it) without any resistance and on Monday night blessed us with another trouble-free night and again astonished me with a two hour and thirty-eight minute nap on Tuesday afternoon. I was almost excited about Sam going down last night, already making plans for what all I intended to do with today's almost guaranteed two hour freetime while Sam napped. (Err...by plans I mean things like do the washing, update Sam's blog, etc). I just HAD to jinx it.

I don't remember Sam being still or anything remotely peaceful for more than about half an hour last night. He tossed and turned and whinged and whined as much as always and then woke up with a cough that is sounding dismally croup-like. And this morning's "free time"? Lasted a total of 17 minutes! It seriously just had to happen. I usually leave home at about 1:40pm to collect Meg from school so on Monday when by that time Sam was still sleeping and we were still reveling in his gorgeously long nap, Brampies went off to fetch Meg for me. Yesterday was also a little tense, waiting to see if he would wake-up on time for me to leave...which of course he did, with literally minutes to spare. Today I only had to fetch Meg at 4:30pm so his two/three hour long nap would have been absolutely no problem at all...had it actually happened, of course.

What are the chances that he can possibly pick up some other illness/germ within the next few days and again leave us no alternative but to re-schedule the orchidectomy?

Yet another postponement....

I often wonder if parents of kids with special needs or those that are just poorly and need regular surgeries, ever sort of "get used" to sending their little ones off into theatre, feeling less and less anxious with each surgery and the recovery it brings with it. I know for sure that I am nowhere near reaching that point and feel as stressed and worried as if each surgery were Sam's first. It, of course, doesn't help much when you think there's going to be a surgery, then you think there won't, then it's back on and then, finally, it's definitely postponed...which is where we're at with the orchidectomy originally scheduled for 14 December then postponed till tomorrow and, as of today, now postponed till 3 February.


So, taking a temp hovering around around 37.6 - 38 ºC into consideration as well as the no eating or sleeping, apnoeaing more than usual and red ears, Doc S did not feel that putting Sam through the surgery and the risk of opening him up for further infection, was wise....and as disappointing as it is not to be getting rid of that little testicle just yet, I was quite relieved to hear Doc S's verdict. So, here's starting a whole new countdown till 3 Feb.


There was something quite amusing that happened while Doc S was drawing some blood a few days ago, which I forgot to blog about. First, some background :


When Matt Tooke and his family visited us a few weeks ago, either his mom or his dad mentioned that Matt had such a sensory aversion to a particular texture that it would physically make him gag. At the time I thought to myself that it was surprising that Sam, with all his sensory issues, had not yet reached this level of defensiveness. Barely a day later (it could actually have been the same day) Meg was playing with a toy pom-pom and when it touched Sam's arm, he gagged! A few days later, Meg was playing with a balloon and sent it Sam's way and when it touched his hand...he gagged. The little mischievous smurf, I thought, never misses an opportunity for attention so had to "steal" an idea from our conversation that day. Anyway, we became more and more aware of new textures which would cause an aversion-induced gagging, like when Sam's favourite foam number 5 got torn in two and I cellotaped it together, he gagged when he accidentally picked it up at the point where I'd put it back together.


Anyway, texture aversion was nowhere near my list of concerns when Doc S drew Sam's blood the other day. Of course our first and main worry was that when Doc S put the needle in, Sam would scream so much that he'd vomit...especially as finding Sam's veins always proves to be a lengthy and fairly traumatic event for Sam. But, quite remarkably really, Doc S found that little vein super quick and had drawn the necessary amount within barely more than a minute and although Sam did cry, it was nothing near as epic as what we'd anticipated. But then Doc S, unknowingly, did the unthinkable...he put a little plaster over the tiny puncture! And we were off....to vomit-city. Of course we didn't figure it out straight away,  trying to catch bucketloads of puke does sort of distract you for a second. It was only when Sam managed to dislodge the plaster and then proceeded to gag some more that Chris figured it out, but by that time Sam had already emptied the entire contents of his stomach (which seemed surprisingly full) all over the pathologists' office'. Never a dull moment with our Sam...or even remotely ordinary for that matter.

Confucius says.....

....he who is confused by good news needs swift quick up the bum!

Okay, Confucius didn't really say that but he darn well SHOULD have!

I spent the whole of yesterday with my cellphone almost literally attached to me, waiting anxiously for Doc S to phone in the blood tests which, after a few difficult days with Sam and a couple of funky urine analysis' on Sunday, we were almost certain would confirm that Sam has Hepatitis A. Although I couldn't for the life of me imagine how Sam might actually have caught Hepatitis as we don't generally serve poo sandwiches at Cafe de Beer and having to postpone Friday's surgery would have been nothing short of devastating, it was also a sort of relief knowing what has been causing Sam's generally being "unwell' lately - it's now been five days since he ate properly and almost just as many nights without proper sleep. So when Doc S did phone this morning (after apparently having already sent me an sms yesterday - which sms was more than likely deleted by a certain finger happy smurf while watching video's on my phone) and said that Sam in fact does NOT have Hepatitis, I had a rather lengthy ''Huh?" moment which must have left him wondering what the heck kind of mother am I that sounds more disappointed than relieved that her child is not sick. I had just really expected the tests to come back pointing to Hepatitis so it took a moment for the news to sink in.

So, of course, it means we are all good to go for Friday's surgery. Sam will still see Doc S for his usual pre-op examination on Thursday, especially as Doc S thinks the funky-urine-analysis gremlin might be because of a viral infection but if all goes well, God willing, Sam will be minus one seriously disruptive little testicle by this time on Friday.

Haven of Hope

Okay, here we go...blog post attempt no.4!

The blogging powers-that-be seem to have concocted a conspiratorial plan to prevent me from blogging...those "powers-that-be" being our new internet service provider and my little Acer notebook. The notebook and the new modem together are about as fast as a snail on a heavy dose of Prozac...hence the almost 30 mins it can take to download just one picture, when u plug the modem into the pc the pc crashes for some reason so that's not an option and when I finally out-patienced the notebook and shuffled through a painfully long blog post...it threw a saving error at me and the whole post was gone.

Moving swiftly along (MY swiftly that is, not the Acer's)...it was back to school here in Cape Town this morning, amongst the normal chaos that goes with the first week of school. Meg and her little clique sat waiting anxiously for their names to be called out to see whose class they'd been placed in (with their sights set on one teacher in particular) and, perhaps more importantly, to see whether their group would be split up. Well, the teacher concerned, Mr V, is obviously extremely popular so the whole process had the same kind of vibe to it as a live episode of Idols or X Factor. All the other classes were called first leaving just one group and one teacher behind, Mr V, and although you could see the almost-there look of relief on our kiddies faces there was still that anxiousness of waiting to hear their names called out one-by-one just as confirmation that there was in fact no mistake and they were all in his class. But Mr V kindly set their minds at ease and announced that all those left behind were in his class.....the group erupted into cheer. So Meg is super thrilled to have not only all her friends with her again this year, but to have such an awesome teacher too.

The school holidays have whizzed by relatively quietly and uneventful. We were desperate to at least do something with the girls before the school year began and, after contemplating various outdoor activities which would have been loads of fun for Meg and Chrisna but not so much for Sam, we settled on a trip to the Aquarium last week. Once we'd recovered from the initial shock of having paid the entrance fee (a great big OUCH! and, from an adult's point of view, nowhere near justified as far as the experience being worth the money goes), the girls did seem to enjoy themselves. Sam tolerated the outing more than enjoyed it and was not too impressed with the great big tanks, high noise-levels and general overcrowdedness of the place. Still, now at least we know. We had to walk through a craft market to get to the entrance and there was a stall selling African drums, with some drumming demonstrations and Sam really loved that. It was the most entertaining part of the trip for him.

Then, as my FB friends know, last Thursday we were invited to visit the Haven of Hope Equine Centre on Kaapzicht wine farm, just minutes away from us. Haven of Hope is an awesome ministery born of the love and passion of two stunning ladies, Juanita and Maryke, for both horses and children with special needs. Sam was delicately introduced to the horses and ponies benefiting from Juanita's and Maryke's care and dedication, with a special focus on him getting to know Strawberry, the little pony in the picture upon whom Sam will begin his hippotherapy.

Thembi and Jabu, two beautiful spirits with a heart-breaking history

Jabu kind of stole the show for me, he has the gentlest most enchanting aura...haunts you for days

Haven of Hope relies solely on donations to keep their establishment going. If memory serves, there are five horses and three ponies and that's quite a number of horsey mouths to feed and take care of. All riding sessions for special needs kids are FREE! and almost all the physical work on the farm has been carried out by these two ladies. Donations or even secondhand building materials are greatly appreciated. HOH's banking details are : Acc Name : J Lourens, Bank : FNB, Branch : Bellville Civic Centre (Code 200910), Acc number : 62013287348 (Current account), Ref : HOH. If you would like to contact Juanita or Maryke, kindly send me a mail.

Smurfy News : We are eagerly counting down the days till Sam's surgery on the 20th. I am a little anxious that Sam might come down with something by then, preventing the surgery but pray wholeheartedly that this won't happen. We've had our usual tango with our medical aid provider who, although this will be the fourth such procedure, are refusing to authorise payment of Sam's glaucoma examination from our hospital plan. Their reason for this is that the procedure code falls under the category of procedures carried out in the specialist's consulting rooms! Mmmmm...okay! And if the patient is a special needs little kid who would not quite understand having to sit quietly in a doctor's chair while having his eyeball probed? And the reason why this procedure was authorised in the past? Well, the explanations I got was then that they will pay for the procedure, but without issueing an authorisation number and not from our hospital plan but from our day-to-day benefits (Okay! And so then how are YOU paying for it?). I was also told that the procedure should never have been authorised before but was due to the incompetency of this consultant's colleague and that if I wished to take the matter further with this consultant's team leader, I could but at the risk that they might then just decide to deduct the cost of the previous procedures over the last two years, from our savings account NOW! Threaten much? The best part was finding out the description of the procedure code Discovery are refusing to authorise out of our hospital plan benefits : "Examination under general anaesthetic" Know many doctors who do examinations under anaesthetic in their consulting rooms???

So our choices are to either not go ahead with the glaucoma examination for now, but without knowing when next Sam will be under anaesthetic giving us an opportunity to do it at a later stage or to just foot the bill and not take any chances. Obviously we're going with Option 2.

Hold thumbs guys as I click the 'Publish Post" button....

2011 has left the building....

...and I'd not be entirely honest if I said I was sad to see the back of it. But, nevertheless, 2011 did see Sam learn to crawl, make at least something remotely resembling an attempt at signing and of course there were the many blessings we received recently which blessings kept on growing when we received yet another gift from Lancewood cheese on the 22nd of a huge cheese hamper complete with daunting cheese-cutting set and a lovely, squidgey teddy bear for Sam. It was precious finally meeting John and his colleague, Sarah, in person both of whom are filled with caring and compassion for others...you can just see FEEL it.

We had, as usual, a fairly quiet festive season with an early Christmas Eve visit to Sam's Granny and Great-Aunty Al and then a small, but enjoyable gathering for Christmas Day lunch with Aunty Cammy and Uncle D and the rest of us here in Smurfville. A few days before Christmas I was still a bit sceptical about whether Sam was actually going to avoid a hospital stay on Christmas Day as, as usual, it has taken him quite some time to get over the last viral infection and croup. Thankfully there was no hospital stay on the cards although Chris did land up doing most of the Christmas shopping on his own (not sure he saw this as a negative though as he does so love shopping - seriously!).

New Year's Eve was remarkably uneventful, with the exception of Sam eating about five mouthfuls of un-pureed "normal" macaroni and cheese with only a couple of gags, but still managing to swallow. Just before Sam's last surgery, he had started tolerating more textures so it was good to see, albeit tiny, a glimpse that perhaps it might be something we can start working towards again. Although, having said that, the fact that we are only 19 days away from Sam's next surgery - without him having found his way back to his "good place" yet from the previous one - I am not so sure that any kind of progress is something we should anticipate for now. Sam's sensory issues (or rather "fears" which seems much more accurate) seem to fluctuate erratically from day-to-day. For about 3 days last week I could not get him to sit in his high chair, the second I started moving towards the chair at mealtimes he would clench his little hands to his chest in his usual panic-stricken pose and that was about as far as we got. And then, just as suddenly and un-explained as this new fear appeared, so it vanished and we are back to doing mealtimes in the feeding chair. Bathing, getting into and out of the car and putting Sam into a crawling or sitting position on the floor remain still extremely challenging. I have never looked more forward to a surgery than the upcoming one to remove Sam's right testicle, especially after Dr B shared my concerns that a great deal of Sam's sensory issues could be related to pain or discomfort in the area where the testicle is tethered to a blood vessel. There are so many unanswered question riding on the outcome of this surgery so I can only pray that, despite the initial pain and trauma, we will be well on the way to recovery, from a sensory point of view.

Floating restlessly at the back of my mind is the completely irrational and whacky notion that there is something going on with Sam's spinal cord. I think that perhaps the fear originated from Sam's first sensory lapse in January 2011 taking place after his spinal cord surgery but not in any way eased by the fact that, where as Sam's urinary flow was strong and "healthy" for quite some time, I have seen too many weak, dribble-like wee's over the past couple of weeks. We also went through a period shortly before the TSC surgery where Sam seemed almost unable to straighten his legs completely and when we walked with him, would move his legs in a strange puppet-like motion...and although not quite as severe, Sam seems to be doing this again. Granted, he is not doing much walking at all lately so this could probably be more related to stiff, un-exercised muscles. Again, logic tells me there is no way the TSC is playing a part in Sam's issues right now...but what is logic anyway? Nothing more than a skill one acquires through endless rounds of chess-playing and galaxy-searching. Mmmm....no, I think I'm getting confused with my Sims now.

And from one countdown to another...there are only 70 days left until the Argus Cycle Tour! How scary is that? Okay, perhaps not for you...but for me it's horrifying. After we first registered to ride I looked up a Fittrack program which helps you train for the 110km race in just twelve weeks. I thought, "Cool! Still like 5 months to go, so I'll go back to the program in a couple of months time!" Well, I finally registered this morning to begin the twelve-week training program, TODAY...being ten weeks away from the race. So, even though the program is called the Survival Plan (which means you're main aim is purely to just complete the 110km's in 7 hours)...I am not too sure I'll be doing much surviving on that day. I think I will be pretty gobsmacked if I actually manage to complete the race. Whose completely absurd idea was it in the first place to attempt this? Oh ja, it was mine! (grins sheepishly)

Sometime in the upcoming week, Sam is going to be slowly and gently intoduced to some riding-therapy. I am so excited (okay...and a little scared, for me that is). An ex-colleague and friend started an awesome mission a while ago, together with a friend, to rehabilitate and take care of a number of horses, who had previously suffered abuse, neglect, etc. and now Haven of Hope shares the therapeutic benefit of horses with several special needs children. Something wonderful to look forward to, I am sure.

In closing, three very brief pics from Christmas Day (my pc is on the blink and it took 45 minutes to download just these 3 pics...3 out of the 20-something pics I originally planned on posting).

 

Sam has really taken to tearing up pieces of paper...magazine...photo's, so we thought that this would be his first "real" Christmas gift-opening experience, but he was more interested in what the girls were doing.

Probably Sam's most stunning gift - a portable dvd player for the car - from his Oupa Joe. For those that don't know, Sam is so not a car-travelling person and even short, ten minute trips to and from the school or shop usually results in crying and whinging so here's hoping this pressie is going to lighten the travelling load up a bit!

Oupa Joe's pressie for Megs was a beanbag chair, which she has been wanting forever, but which Sam and Brampies seem to have taken over (although Sam does seem far more comfy than his Bramps).

Every now and again, I take a quick peak at my previous journals just to kind of "compare" where I was emotionally and spiritually at that time, compared to the present. I think I've mentioned this before, but in case not - I had a "feeling" almost right from the beginning of my pregnancy that this baby was different...different to Meghan, to Luke...to every child we know. I confessed many times to God that I felt that I was being greedy by wanting a third, healthy and "normal" child but begged him nevertheless to look upon my pleas with favour. This morning I looked at what I had written on 1 January 2009 :

"In this world you will have trouble, but take heart! I have overcome the world!" John 16:33

So strange that I read this verse today. It was in a Karen Kingsbury book that I read yesterday."

It is so true...I think about what worries I have at the moment - the health and development of the baby growing in me, the health and wellbeing of my children. And yet the Lord has never forsaken me, so why do I worry so?

Then I watch programmes about small babies of just 9 months with cancer and braving chemotherapy and surgeries, Lord, and then I am aware of how extremely blessed I am and how you have always worked in our lives and I am humbled, Lord. I thank you...for every blessing and miracle I have in my life. I have to learn to pray as though I believe I will receive. I pray Lord, that you will bless our baby. That he/she will develop as perfectly as what Meghan and Luke did, with your Grace Lord and by Your hands."

And, as I've taken to doing, I close the journal, reprimanding myself for taking the silly thing out in the first place because all I walk away with is the fear that I did not pray as though I believed I would receive....or believe I will.

Elvis has entered the building....and the family!

Nah! Just kidding!

So Pasty Smurf seems to be, albeit slowly, on the mend. He is still coughing and late this afternoon his cough was sounding very croup-like again. But thank goodness we have had no v-wording for two solid days now (and, No, I am not sending that out into the Universe as an invitation). I am so disappointed that, with all the chaos at last week's paed appointment when Dr B weighed Sam, I didn't even ask what his weight is now. I do remember that his height is now 84cm which is not too shabby at all because that's like a 3cm growth in about four/five months. Also, after showing Dr B how severely Sam's sensory defensiveness is at the moment,  Dr B did a delicate examination of where he thinks Sam's right teste is sitting and, although not 100% sure but pretty darn close, he thought he located it sitting much further out of Sam's groin area than we anticipated - almost kind of under Sam's hip bone. Anyway, Dr B is quite convinced that that little teste could definitely be causing Sam some discomfort, at best, if not pain with certain movements and positions. So, boy are we counting down anxiously until the 20th January to, hopefully, see the removal of the teste having a profound effect on Sam's SID.

On Sunday afternoon Sam seemed to be feeling a little better so we ventured out into the big, wide world...or more specifically down to Aunty Cammy's to meet the new addition to hers and Uncle D's family. So folks, meet Elvis....

...who loved playing with Sam's stacking rings almost as much as Sam does,

and had Sam beside himself with excitement.

Between Sam and Elvis, they kept Uncle D busy fishing the stacking rings out from under the couch.

Random pic of Sam and Dad

And please do note Dad's snazzy new haircut...cut and styled by moi! I'm thinking of opening my own little hair salon, Salon de Smurf...just as long as all the customers are only wanting military-style do's. Although I'm quite sure I could manage quite well with an emo-style cut (not even sure if there's even any cutting involved there) and have extensive experience with the haircutting of squirmey-wormey-type little people. I've asked Meg several times if I can't experiment a little on her hair too, but would you believe she's just simply refusing. Tsk Tsk.

Pasty Smurf

We are on Day 4 of Sam’s virus-croup-combo, but it feels more like Day 40. Sam is kind of on a vomit/fever/coughing roller coaster. He goes through stages when it appears as though he might be on the mend, but then next minute he’s losing his breath, hitting the 38 temps and vomiting again. It’s just a LITTLE frustrating!  The roller coaster did kind of end on a “high” tonight with Sam going down with much less drama than the past few evenings so let’s hope it’s a good sign. I have heard that there is quite a potent virus doing the rounds in Cape Town which has so badly affected children as old as fourteen, that they’ve had to be hospitalized. Doesn’t really set the tone for a great festive season having your child in hospital, so here’s hoping the virus makes itself scarce!

At Sam’s doc appointment on 1 December he worked himself up into such a state when the doc examined him that he landed up vomiting all over both him and I (Sam, that is, not the doc – although he too was starting to look a little green towards the end of the consult). So I decided to go prepared at Wednesday’s appointment with Sam’s paed, even though “going complete” meant having to lug along two separate bags : both Sam’s normal “baby” bag (which is already jam-packed) and then a “pull-in-case-of-emergency” bag consisting of a great big towel (which has proven excellent at vomit catching) and a complete change of clothes. And thank goodness I did. The actual examination was remarkably uneventful, with Sam almost falling asleep at one point. At the end of the consult, I had just finished telling Dr B about how badly Sam has regressed with regards to his sensory issues, when he decided to weigh Sam (completely unawares, of course, of how bad it really is at the moment)…which involved Sam sitting on the baby scale…which (with sitting anywhere being a serious No-No at the moment) then involved Sam freaking out and vomiting everywhere!

Dr B opted to send us home anyway, with strict instructions to get Sam keeping some fluids in by the end of the day or, failing which, a hospital stay and IV were inevitable. I pointed out that Sam’s original surgery date had been Dec 14th and that he was probably determined to stick to the original plan of being in hospital then (he doesn’t take well to change, our Sam) so Dr B suggested I make a detour through the paediatric ward on the way out just to satisfy Sam’s need to be in hospital! I was like, “Errr….let me think about that one….of course not!!”

A rather pasty, bleak little smurf :(

Well, we are eight sleeps away from Christmas Day and we have still not done a scrap of Christmas shopping…although having a vomiting smurf accompany us could prove invaluable in lengthy queues! If he doesn’t improve quite drastically over the next couple of days though, I’m afraid all of our pressies are going to be in the form of a stack of I.O.U.’s….imagine?

Adrian

Yesterday morning, we took a little drive, to go wish a friend (well actually Sam's friend, Adrian) Merry Christmas.

This is Adrian :

Adrian sells newspapers at an extremely busy intersection en route home from dropping Meghan at school and every schoolday morning, without fail, the second our car stops Adrian rushes up to the window and spends the next two to three light changes entertaining Sam by dancing, signing, clapping hands...you name it, he does it...as long as it gets a smile and some handclapping out of Sam. I can count on my one hand the number of days Adrian has not been at work, he's there whether its blazing hot or pouring with rain...and it's about the only part of our car journey during which Samuel does not moan and cry. Over the weekend we received a truly precious gift from a certain Knight and his Princess with an ever more precious message. Seeing as we seem to have been the object of many generous gestures lately, we wished to share our blessings with someone who is always smiling and friendly and keen to make others happy, so we went to share our gift with Adrian and thank him for the cherished contribution he makes to Sam's life. We'd be quite devastated if we had to face that intersection without Adrian as I am sure several other motorists would feel as Adrian's antics usually draw smiles from others as well (although there are the occasional frowns and disapproving looks).

No more faking, Sam!

We are still kind of swept up in the excitement and thankfulness of the blessings Sam received earlier this week. I say "blessingS" because not only did we receive the super generous sponsorship from Lancewood but a little later on Tuesday received yet another, equally generous, donation from an amazing family in their personal capacity, if not more appreciated because of that. Stan & Jodi - your compassion and delight in wanting to help Sam be the best Sam he can be, is awesome and truly inspiring. Our true thankfulness goes far beyond what any words can express. xxx

Our little conqueror smurf is completely oblivious to what amazing events have being taking place all around him this week, except maybe as to why Mom was bawling all the way to OT after receiving a certain phone call. But who can blame him as, after a particularly fussy night on Tuesday ("fussy" meaning that instead of thrashing and rolling around every 20-30 minutes, he was thrashing and rolling around every 2-3 minutes) and a sudden refusal to drink or eat on Wednesday afternoon, our GP confirmed yesterday morning that Sam yet again has a red, bulging ear drum. (I am NOT even going to go there!) So, he's on a five day course of Orelox, which of course tastes simply smashing, until his ENT appointment on Tuesday, which ENT appoinment will undoubtedly lead to grommets...soon! My initial "plan" was to try and stretch the grommets procedure until the 14th December, for which his surgery to take care of that little right testicle was originally scheduled, in order to avoid two anaesthetics so close together. But there goes that plan out the window with the testicle surgery now been moved to Jan. Now we're still facing two anaesthetics so close to each other. *sigh*

Perhaps Sam HAS picked up on all the good things happening around him, as he has certainly become more verbal lately...as if to say "See, I'm doing my part too!". At last week's speech session, Sam thoroughly enjoyed some mirror-time, so I found a loose mirror we had lying around (Uhhmmm...if swiping it out of Meghan's room could be considered loose) and have placed it in Sam's little play area and he spends ages on his knees in front of it doing all sorts of things like different assortments of hand-clapping, some drumsticking on it (there just had to be tapping/knocking somewhere) and even some self-awareness exploration like touching his own face, then his head, then his knees...he even pulled his own hair yesterday! (Told you those little fingers have a mind of their own). It's probably been one of the most worthwhile additions to his toy collection - who woulda figured?

We've yet to receive any news from SARS as to whether they do indeed agree that RTS is an actual disability, making me wonder if perhaps they've decided otherwise. In light of this I wondered to myself if perhaps we are not the ignorant party, so sat Sam down last night and decided it was time to get down to the crux of the matter. I said, "Sam, apparently SARS is under the impression that you are faking a disability. So, scadaddle your little rear-end off this bed, march down the passage to go ask your dad to make you a sarmie while I quickly get rid of all the accessories, meds, books and other tools we've accumulated in lieu of your supposed special needs."

Anyway, I've gotta run...we're off to SARS quickly! I'm going to ask them to take a quick look in Sam's ears for me...what with them being such profound medical experts I am sure they can tell me whether there's any improvement!

In closing, some pics!

Sam refining his DJ skills...for whatever reason, he loves spinning the discs around in their covers!

(No, we don't expect these cd's to be readable for much longer!)

 

Having a chat to Dad!

 

Sam bringing new meaning to the term "parallel play" 

From mincemeat to unexpected blessings!

Recently a very good friend shared that she was feeling spiritually "battle weary", something I too have felt recently. I was a little taken aback...this friend is the essence of all that is good and righteous, filled with endless patience, compassion and love. I thought to myself, if this friend is battle weary then I must be spiritual mincemeat! Although we face the usual challenges most special needs families encounter, these challenges have not alone contributed to my weariness. There have been countless reports of abuse and assault of chilren and special needs people over the past couple of weeks which have made me question whether putting Samuel into any special needs facility at any point is even something to consider anymore, at least while he is non-communicative (which I am sure he will be for some time). There was the devastating story about baby Michael Connor who, although born normal, was rendered blind, brain-damaged and a quadriplegic...a state into which his mother beat him over a period of months, from the age of three months, and for which neither her nor his father are receiving anything remotely resembling a just punishment. When a reporter followed the mother leaving the sentencing hearing to her car, she retorted, in a hostile manner,  "Get a life!"

My heart sank. I vented to the heavens, I vented to my poor old dad (who was, up until this point, embracing his new-found spiritual curiosity)...where is the Lord's presence? I argued with Him that He is going to lose this world before any rapture or the coming of any Kingdom. With me leaving very little room for anyone else to have a say, I have to confess that it was very much a one-sided argument...or so I thought :)

Yesterday morning I received a phone call from our local radio station, Kfm  asking me to hold on for a call, after which the DJ, Ryan, and my sister, Cammy, both came on the line. After an extremely emotional introduction to our story by Ryan, followed by an equally emotional contribution from Cammy, Kfm added another caller to the conversation. John van der Westhuizen from Lancewood Cheese shared with us that Lancewood was going to sponsor basically all of Sam's speech and physio therapy for the next year! My first thought was - my conversation with Him had not been so one-sided after all! Okay, honestly, that might have been my second thought....my first thought was OH MY WORD! WHY AM I SOUNDING LIKE SUCH A NINNY OVER THE RADIO!

What an awesome ending to a year I have been otherwise longing to see the back of! I don't think the problem is that the Lord's presence decreases, but rather that we really do become THAT battle weary that we no longer have the same amount of strength and passion to search as carefully and notice as clearly when we do come across it. As I read recently (and have possibly posted before) it is not the Lord that leaves us, but us that leaves the Lord!

So the sponsorship from Lancewood is awesome, it will certainly ease our financial burden over the next year and how wonderful that there are still such giving people and organisations out there. But even more awesome is the realisation that firstly, my sister thinks so highly of the kind of mother I am to Sam, Meg and Luke and secondly, how much both Cammy and everyone else in my family (especially my Aunty Anthea who too sent a similar request) want to help us and see us rise. And, when they personally don't have the resources to help, they will do what it takes to make this journey so much easier.

The Lady of the Hour...Sam's Aunty Cammy

Two things in closing :

1. Please don't forget about the plight of the Harcombe family 

2. I discovered a new "worst place to v-word" nominee...so the Mugg&Bean, Ackermans and the car all move over to make way for....into a basket full of newly washed laundry! 

"Special" Connections

Earlier on this week a friend and ex-colleague and I connected up on Facebook. I glanced briefly at our "mutual friends" expecting to see only people we had both worked with several years ago. Surprise is not an adequate-enough word to explain my reaction at seeing a completely unexpected friend, Lloyd Tooke, daddy to Sam's RTS brother Matt Tooke . Those of you familiar with our RTS community will know there are not many people around who can say they know an RTS family, let alone one single person being able to boast at knowing not just one, but two RTS families...purely out of randomness, without having met the one through the other. Awesome! After a super brief catch-up we discovered yet another "special" connection, Alan and his wife, Carien, have a very special angel of their own...Catherine Jamie Harcombe. Jamie, as she is known, has Down's Syndrome and at the tender young age of just four months has already endured a major heart operation as well as another surgery just days later to remedy the build-up of fluid surrounding the heart, which surgeries has left her mom and dad with an almost impossibly outrageous medical bill, for which they are receiving no assistance from their medical insurers. Please go have a look at Jamie's webpage to read more about the Harcombe's plight...and go ahead, make a donation....I dare ya!

Life here in Smurfville continues much as it has over the past few weeks...we are in the middle of Meghan's final exams for which the studying, I had thought, was going to go pretty amicably. But alas, even though she was super-enthusiastic about studying for all the revision tests for which she got mostly fullmarks or just one or two incorrect answers, the studying for the actual exams is proving (for some odd reason) to be so much more troublesome for Meg. As I sit typing this, it is pouring with rain outside as Spring battles to uphold a permanent presence here in Cape Town although I am pretty certain that in just a month or two's time I will be complaining about the Summer heat.

As for our Sam, he is still protesting solidly against his physio sessions and, quite often now, his occupational therapy sessions as well. Speech therapy is going remarkably well, mostly due to Tanya's quick-as-a-flash movements when she "sneaks" a subtle speech prompt in while Sam plays. I haven't quite got the hang of it yet and first try and maneauver Sam into an easily-receptive position, then have to co-ordinate my fingers into the required position and then slowly "go in" for the actual contact on Sam's face...by which time Sam has seen me coming from a mile. Luckily though Sam's defensiveness is much less-guarded with me so even though I sometimes have to repeat the prompt once or twice before I get it right, he's actually quite tolerant. Sam's eating habits stay pretty much unchanged, we're still predominantly on Stage 2 baby food. Sam has seemed to warm up to his slightly-distorted notion that whatever is on our plate is guaranteed to be tastier than what is in his bowl. The amusing part is that often we are eating the same thing! His sleeping is still as disruptive as always and Chris is almost convinced by now that Sam has restless leg syndrome as he tosses, turns and thrashes around literally the whole night. I am not convinced that it is not some kind of spin-off of something that is happening with that right testicle. Either way, I can count on one hand the number of nights over the past few months that Sam has slept through without me having to get up sometimes as regularly as every 20 minutes to re-settle him...but I've blogged about this before, so let's just leave it at that ;)

Chris and I are battling to decide on a Christmas pressie for Sam, who is unable to provide us with a detailed, in-order-of-wanted value list, approximately four month's in advance...as Meghan has done. We've considered buying him a walker, but he frightens even when walking with one of us holding his torso, which is a great deal more secure than a walker - so the walker is out. He already has several educational, noise-making toys of which most can hold his attention for a maximum of about two minutes. Ride-on's are definitely out as the one we bought him for his birthday is only good for being pushed by a crawling Sam, he refuses to actually sit on it let alone ride on it. The chances are by the time he's conquered his sensory issues enough to actually enjoy such a toy, his little legs will be too long for it anyway. We'll have to put a great deal more thought into this one, without forgetting that Christmas presents this year are largely going to depend on our ever-so-giving South African Revenue Services who recently advised us that we have to pay in an amount of R15,000.00 for incorrectly claiming medical costs for a child with disabilities.

But there is awesome news, folks! According to SARS and contrary to the belief and advices of many specialists and doctors who have obviously wasted their hard-earned degress (nevermind the living proof of actual RTS patients)  - Rubinstein-Taybi Syndrome is NOT permanent. Yes, you read correct...in approximately five years Samuel is going to be cured and will be a "normal" boy because, according to SARS, RTS is not a permanent disability. How amazing is that? In five years time Sam is going to walk and talk and be potty trained and eat normal food and have magically-straightened thumbs and feet, no red mark on his forehead....none of that at all (mmm...wonder if those tiny little indentations/holes behind the back of his ears will also disappear). Well, with news like this, who needs Christmas presents, right! Let's hear a Whoop! Whoop! for SARS.

On that slightly-disturbing note.....a random pic of a smurf wearing a smurf!