Potty Leapfrogging

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

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

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

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

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

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

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

Random Pics :

Sam and Dad jamming to some 'tunes...

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

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

Haven of Hope Equine Aid Centre

Smurfville goes GREEN!



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

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

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

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

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

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

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

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

Fievel goes South.....

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

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

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

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

Sam and Fievel - possibly separated at birth???



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

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

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

Sam luvin' birthday parties!

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

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

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

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

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

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

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

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

 

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

"Conquer.....

"...conquer verb defeat, beat, vanquish, triumph over, overcome, overwhelm, overpower, overthrow, subdue, subjugate, get the better of, control, master, deal with, cope with, rise above"

If you look at what the word "conquer"means it would be fair to state that, at the moment, there is not a whole lot of conquering going on in Smurfville...especially where illness is concerned.

Sam has, as I suspected, tonsillitis again. He is on yet another course of antibiotics, Orelox. The only upside of the Orelox is that it tastes hardly as horrid as the Augmentyn, so hopefully Sam will manage the entire course as opposed to the despairing percentage of Augmentyn he actually managed to ingest with the last tonsillitis. Although I say this with fingers crossed because just minutes earlier, he threw up his entire dose of Zithromax. Trying to remember what needs to be given and when has been a little challenging today as Sam  needs the two doses of Orelox, two doses of probiotics and one dose of Zithromax (in addition to all his other "normal" meds) and the first lot cannot be given within two hours of each other.

On the lighter side....when getting Sam ready for his doctor's appointment yesterday I removed his nappy, grabbed the urine sample container and "sternly"instructed him to "wee" so that I could take a sample with...of course not in the least bit expecting Sam to obey. Low-and-behold, Sam grabbed his urine-expelling body part and promptly wee'd....all over himself, his hands, the bed...but also into the container (which my aiming assistance of course). The incident had Chris and I in handclapping squeals of amusement, it was just so funny - as if Sam had genuinely understood and, more outrageous (taking his exceptionally strong will into consideration), obeyed!  This morning, when I put Sam down to change his nappy I noticed it was fairly dry...but as I removed it Sam again guided his hands to THAT part of his body and proceeded to wee and then, while I stood there deciding whether to laugh or moan, looked at me as if to say "And now? Where's the handclapping and laughter?" So I obliged, clapped my hands half-heartedly and smiled while grabbing every towel within my grasp to clean up yet another mess.

A couple of hours later, when again changing Sam, the exact same thing happened...although this time with a little less enthusiasm from my side, if the truth be told. Can you believe the little smurf? Sometimes he's just too clever for his own good...and mine :) Gosh, imagine what an awesome potty-training opportunity this would have been if Sam was walking!

Yo-Yo-ing...care to join me?

I have been rapped across the knuckles by one or two people for not having updated Sam's blog recently, but the truth is there's really been nothing remotely blog-worthy to post about. And, yes, I know in the past this would not have prevented me from subjecting all-and-sundry to my senseless ramblings but we just seem to be caught in this yo-yo-ing time bubble which, I can only imagine, must be pretty tedious to have to read about.


The last two weeks have been filled with much of the usual same old-same old, with the exception of an additional joint-attention speech therapy session last week Tuesday, a follow-up visit to Sam's neurosurgeon on Wednesday and Meg's eleventh birthday yesterday.


So the joint-attention speech therapy went relatively well. Tanya was pleased to see that Sam remained engaged with Meg for the entire thirty minute session, which is quite something because quite often he flits from one activity to the other at regular thirty second intervals, nevermind thirty minutes. Meg just brings out an entirely different side to Sam, completely playful and just so utterly little-boyish as he tackles her and giggles hysterically - it's pure joy to watch. The only minor downside was that Meg, for some completely unexpected reason, was suddenly overcome with uncharacteristic shyness (possibly as a result of Tanya video recording the session) and did not "verbalise"as much with Sam as she does at home. For those of you who personally know Meg, this is quite unusual for a little girl who will quite randomly and without any ado break into song and dance in the middle of a restaurant or shopping centre, or demand that I waltz with her in a doctor's waiting room or something equally unreserved. Regardless, Tanya seemed satisfied that we are still moving in the right direction with Sam which is all we can ask for. About three days ago Sam started making a new sound, sort of like a car sound, and seems to be exploring more with what noises his mouth and tongue are capable of producing.


The follow-up with Sam's neurosurgeon was relatively unremarkable. The consultation started out relaxed enough with Sam banging happily on the desk and pointing out to me every chair he could catch sight of (have I mentioned that Sam has an almost impossible chair fetish) but the second APF moved in closer for an actual examination, Sam initiated his defence mode (arm in "shielding" position across his chest and face) which made APF's task a little more difficult. After performing what examination he could around Sam's defensiveness, Prof F said that he felt all was still going well with Sam spinal cord and reflexes, etc. He did remind me of the exceptionally rare, but still note-worthy, chance that the spinal cord can re-tether when it is repaired at such a young age but felt that, as it would present with the same symptoms it did in the first place, it would hardly go unnoticed. We did agree that an MRI conveniently coupled with any upcoming surgeries in the next year or so would not be a complete waste of time.


Sam's general wellbeing over the last two weeks has been all over the place. Something positive or encouraging happens and I make a mental note to blog about it but before I get a chance to hit the keyboard, something less positive and perhaps a little worrying happens and then I kinda lose the spirit of mentioning the "good" thing because you sort of ask yourself "What's the point? I am just going to have to mention the not-so-great thing afterwards!"


For example : About a week ago, just out of the blue, I decided to try Sam on some Stage 3 baby food and low-and-behold without a single gag or tiny bit of resistance, he polished the food off. I gave the Stage 3 food for another day or two and he carried on eating it without any hesitation. In the meantime, he's developed this really bad habit of insisting on eating from my plate, without obviously being able to understand that it's not always something he'll tolerate. But the one day I had a PB&J sarmie, Sam gestured pointedly at my sarmie so I gave him a bite...and another bite...and another bite and eventually had to make him his own sarmie, which he ate about ⅔ of. The next evening he had a bite of my McD's burger, patty and all, and swallowed quite easily. I was too scared to celebrate too loudly because we all know my friend Murph by now...and, just as expected, by Monday Sam was not only no longer tolerating the Stage 3 baby food anymore, but even gagging on his normal ultra-pureed food. And the reason? Sam is in the throws of coming down with something nasty again. On Saturday night he battled with a snotty nose and problems swallowing while he was asleep, on Monday morning he woke up with a temp just under 38 ºc and by yesterday his tonsils were looking quite remarkably sago-pudding-like (Chris's creative description) with the left one sporting about three of those little pus follicles already.


I decided not to rush immediately to the doc, because I already know what course of action he's going to advise...but instead am just praying frantically that somehow that darn Zithromax will kick-in or kick-butt against whatever relentless viral thing it is that is wreaking havoc on Sam's immune system. I am starting to worry that something is being overlooked...something serious, because I just find it quite challenging to accept that Sam's immune system is THAT compromised that it cannot rid itself of this virus. I do, at the very least, weekly urine analysis' on Sam's urine and realised yesterday that the last "normal" results were at the end of November last year. Unfortunately, come tomorrow, my holding out for the sake of an answered prayer will begin to teeter dangerously on the side of negligence and I will have to make that appointment. But still a few good praying hours left.....care to join me?

Love him so much that it sometimes feels like a physical pain in my chest - so wish I could make him healthy...that's all....just healthy.  

Refreshing....

It was back to therapies for Sam last week, with the exception of physio which we'll start again next week just to make sure Sam has definitely had enough time to recover. Shortly before Sam's surgery, we were invited to undergo an assessment with a NDT OT just a stone's throw away from Meg's school. Sam had his very first session last Tuesday morning, which went quite well although the session was pretty low-key. We've suspended a new kind of swing from our lounge ceiling made from spandex, which Sam is finding way more comfortable and enjoyable than the plastic one we first tried obviously because the new one is far more suitable for satisfying his sensory issues. Day-to-day functioning (from a sensory point of view) over the past week has been none to challenging on the whole though, especially with regards to movements like putting Sam into his carseat and into the bath, etc. Some time after the first testicle operation, Dr B told me that he had an idea that much of Sam's sensory problems were related to the pain and discomfort of having the right testicle attached midway to a blood vessel and Sam's increased mobility and decreasing defensiveness is an obvious indication that Dr B was right. Don't get me wrong - we are still not functioning in a completely normal way yet (Sam's "normal" that is) and things like sitting unsupported on the floor or in his cot, etc are still not possible. But there is progress, albeit painstakingly slow. The new OT also feels that a large part of Sam's defensiveness is related to the trauma of so many surgeries, treatments, illnesses, etc and believes that Sam is very "bright" so is extremely aware of what is going on around him. You can imagine my despair then when last Tuesday evening, after just having discussed this very matter with the OT, an e-mail came through as I sat at the pc from Sam's orthopaed to advise that he would like to schedule Sam's foot surgery for 14th June 2012. One coronary, several hyperventilating gasps of air and a "Please not yet"' e-mail later, Dr dT agreed that we could wait until about September to go ahead with the surgery. And this very matter rides on the back of my last post about doctors who genuinely do care about their patients emotional wellbeing, as well as the physical. Dr dT had consulted with another surgeon who would be assisting in Sam's surgery and this was obviously a date that they had both felt would be convenient for them but still opted to instead give Sam the much needed time to recovery emotionally from the last few months.

With Sam not having ingested even half of the Augmentyn he'd been prescribed the previous week for his tonsillitis, I'd been watching him closely for any signs which might need me to consult the ENT again. By Thursday, while there was no obvious airway obstruction as there had been before, Sam was definitely having trouble swallowing again and even though he was still on some mild painmeds (mainly paracetamol and/or mefanamic acid) he's temp hovered consistently around 37.5ºC so by Friday we were off to the paed again who confirmed that Sam is still battling to overcome the same virus he's been grappling with since December and it was more than likely this, perhaps with some added irritation from the intubation, that had found him admitted on the Monday after surgery. Dr B now feels that Samuel's immune system is just not coping and is severely compromised and not in a condition to be able to fight it's way past whatever virus or bug it engages. So we have started Sam on our second last resort - which is a six month course of antibiotics, Zithromax. In the meantime, while we are trying to keep any further infections at bay, we are to find an opportunity to test Sam's iGE levels and, if they come back confirming Dr B's theory, submit an application to the medical aid to obtain authorisation for the last resort - Polygam Infusions. Polygam Infusions is basically intravenous Immunoglobulin (sourced from donated blood) administered, obviously, via an IV every three to four weeks, over a period of 6 - 8 hours. Needless to say, we are hoping with every inch of our beings that the six month course of Zithromax does the trick though (bearing in mind that we'll be heading into Winter within the next few months) because I just don't see this little smurf being all too excited about having to spend an entire day in hospital...with a drip...every three weeks!!!! (We're gonna need a roomful of OT's to recover from that!).

The Zithromax story proved quite a challenge on it's own for our pharmacy though. Zithromax is one of the few antibiotics which you do not keep in the fridge as it turns into something quite remarkably similar to cement! For now, Sam only gets two doses per week...but the Zithromax only has a shelf-life of five days. Thankfully, after loads of head-scratching and chin-rubbing, we emerged from the pharmacy an hour-and-a-half later with a three week supply of Zithromax powder neatly and accurately portioned off in little containers, which simply require me to mix with the required amount of distilled water (also provided) to produce the exact dose needed for each day it needs to be administered.

One thing really stood out for me last week : that, while there are certainly some medical caregivers who have perhaps lost their passion for their vocation, there are tenfold the number of doctors who have not and we are beyond thankful to have them helping us along our journey. I watched Dr B with Sam on Friday...first spending a good few minutes playing and talking to Sam to relax him, then explaining in careful detail...to SAM...before he carried out each part of the examination. When it came time to weigh Sam I thought it was tickets for sure...having Sam sit on a scale is almost a surefire way of coating your consulting room in some freshly produced vomit! But Dr B (without me coaching him) picked Sam up and held "his baby" the exact way I do when I put him in the bath or carseat and seconds later we had a clear 11.75kg reading!!! So, Friday's consultation together with Dr dT's quick response to my concerns and the pharmacist's patience and eagerness to do what they could to help ease our troubles just completely refreshes the spirit :)

What Special Needs Parents want from Doctors and Hospitals

"An appreciation of our child as something more than a cost-effectiveness problem.



Healthy or ill, rallying or near death, our child is a unique individual with strengths and gifts you may never know about -- not just a bag of organs using up a bed.


Cooperation, not combat.



Doctors and hospitals should be fighting with us against what's ailing our child, not against us to circumvent our parenting rights: Be our ally, not our enemy.


More options, not fewer.



If we seek alternative treatments, it's not because we're fools or dreamers, but because you've stopped offering creative and hope-inspiring options; show us you're not tied down by the-way-it's-always-done, and we'll listen.


Respect for the power of love.



Our love for our child endures past diagnosis, past illness, past hospitalization and treatment and futility and brain death -- our love for our child has no limits. Don't be surprised if we put more faith in that love than in you.


An understanding of the preciousness of one more hour, one more day.



Our memories may soon be all we have of our beloved child. We want as many as we can get. One more birthday, one more book read together, one more smile -- these are not small things.


A little respect.



We may not have gone to medical school, but we're the world's #1 expert on our child. Treat us like a peer, not like a roadblock in your way.


Get this: You could be wrong!



Doctors make mistakes. Frequently. Not little mistakes. Big ones. Chances are, we've had doctors underestimate, misinterpret, or mistreat our children before. We're still willing to listen and work with you. But take off that Superman cape before you talk to us."

The above is an excerpt I borrowed from Terri Mauro off one of her recent  specialchildren.about.com posts following the outrage caused by the atrociously unjust manner in which Amelia "Mia" Rivera's life threatening need for a kidney transplant was dismissed due to her mental disability.

The subject of doctors and their compassion and care (or lack thereof) of patients, especially special needs children, is probably one of my most passionate and infuriating "sensitivities" and I have "sensitivities" by the truckload so that's really saying something.

Since Sam's arrival into our lives we've had to, as with all SN families, encounter too many doctors, specialists, nurses and the likes. The reason for having had so many is not purely because that's how many medical caregivers Sam has needed but also largely due to not always being able to find a caregiver who is not only experienced and clued-up in his/her particular field, but also compassionate, caring, supportive and assertive yet humble enough to lead you confidently towards a particular treatment/medication, etc without stripping you of your power to make that final decision at your discretion. As I've mentioned many times before, we have been blessed to find several specialists to take care of Sam who genuinely are all of these wonderful things, but there have just been too many who either intentionally dismiss several of Sam's issues relating to his wellbeing either because of unjustified ego's or complete indifference to all of their patients.  Or  those who unintentionally dismiss him possibly because they feel his mental disability does not allow him to experience pain/discomfort/fear the same way we do? While I struggle to hold the second group completely accountable for their actions, the first group I believe are bordering on unforgivable.

I have sometimes wondered if perhaps my less-than-assertive manner of speaking and only-slightly-taller-than-a-smurf height might have something to do with why some doctors don't seem to pay much attention to my suggestions/queries or take me seriously because, in all fairness, it is not only doctors who sometimes overlook (pardon the pun) what I have to say. But then I will occasionally notice other "normal" patients being treated the same and it is, in a warped kind of way, reassuring that it isn't just me and/or Sam. There can surely only be two reasons why any one person decides to choose a vocation in medical caregiving : a pure and unconditional love of caring for others and their wellbeing or a pure and unconditional love of money. And only one of those reasons belong to the doctors you want treating your child. The whole situation is frustrating beyond, largely because it will never change. I cannot even begin to imagine the emotional anguish Amelia Rivera's mother must have endured when being told that her precious daughter's life had been rendered "second rate" just because of the different and unique way in which her little brain functions.

I always have and always will continue to make a point of sincerely thanking those doctors/specialists treating Sam who are quite obviously not just driven by the money, and affording them the praise and recognition they righteously deserve.

Learning who's boss, a ferocious beast and Frugal Dad

Sometime over last weekend (could perhaps have been Sunday) I was standing outside getting a breathe of air and debating with myself, in desbelief of course, whether it could actually be possible that a new ailment had been added to Sam's surgery recovery and consequential throat infection. Mid-debate I noticed this rainbow and while running inside to grab my camera found my spirits lifting a bit as I was certain it was a sure sign that there was nothing to be anxious about.......

...alas Monday morning's ENT appointment slammed that momentary lapse of reason to the wall! But, oh, the joy (albeit it temporary) of whimsical daydreams....

Despite his tonsillitis and, mostly nighttime, struggles with swallowing and breathing Sam didn't seem in such bad spirits for the most part and has been happy to crawl around and play and not-sleep (you know, the usual stuff). There is an app on his iPad (can't quite remember the name - could be "Zoo-something-or-other) which shows a pic of an animal, says the animal's name and then makes the relevant animal sound. Sam has taken to matching his little plastic animals to whatever animal pic is on the screen. The penquin picture usually has us laughing as the penquin's eyes are yellow and a little scary if you ask me and the penquin sound is quite screechy and startling...and Sam knows this by now, but still insists on flicking repeatedly to the penquin pic, pressing the sound button and then moaning as if he's been unwillingly subjected to it. Comical little smurf...

Comedy aside - the challenge of trying to get Sam's antibiotic in him has become hectically distressing and on more than one occasion driven me close to tears, purely because I know how vital it is for him to complete the course in order to avoid his tonsils having to come out. He had one full dose on Monday and another full dose yesterday morning, if I remember correctly...but that means that out of the required 45mls he needed in total, he's had just over 9mls which I doubt would be anywhere near enough to combat the tonsillitis. In actual fact, I don't just doubt it - I'm pretty darn sure it hasn't been enough purely because I can see what minimum affect the Augmentyn has had on his system, compared to the usual havoc it wreaks. The last time Sam had the Augmentyn we actually stopped it 3½ days into the course because, despite me stopping his Movicol completely and keeping him on Reuteri, the diarrohea just got completely out of control. This time round I haven't even had to reduce his Movicol at all, nevermind stop it completely. So the better part of the Augmentyn has been either vomited out when Sam's starts crying because of having to have it or plain and simply spat out, sometimes after having been kept in Sam's mouth for over half-an-hour. The picture below was taken on Tuesday night when (and this is no exaggeration) Samuel kept the Augmentyn in his mouth for over 45minutes. I decided to try and give it to him while he was in the bath, for two good reasons 1) being to hopefully try and salvage some of the furniture and carpets which is coated with the lovely chalky mixture that is Augmentyn and 2) being that I thought his bathing and playing and then getting dressed, etc might distract him from his stubborn refusal not to swallow (and that has to be all it is, because the stuff doesn't even taste THAT bad...he's definitely had worse). How naive of me to think I can outsmart Mulish Smurf. Sam proceeded to be bathed, dried, dressed and then happily played on the floor...all the while keeping the, now mostly-saliva,mixture in his mouth.

The problem of course was that by Wednesday I couldn't even try and re-administer any of the doses expelled because there just wasn't enough of the antibiotic left. So if it came out...it stayed out! This morning, low-and-behold, smurf swallowed every last drop of what was left of the Augmentyn (which was only just over 3mls) without moaning, resisting or gagging/vomiting once! Just too little, too late. With the un-resisted dose this morning it's as if Sam was just making it exceptionally clear (as if there could possibly have been any disillusion) exactly who is boss....

 

Random Stuff

I was watching a program yesterday morning about Chow Chow's and the expert leading the discussion advised that Chow Chows are one of the most powerful and formidable breeds of canine and even have the extra teeth to prove it. I am waiting for a re-run of the show so that I can record it and show it to our Max - the same Max who literally wet himself when a 3 month old pupply ran up to him to play one day. The same Max who tries to slink away as much as possible into the ground when we go for a walk in the hope that the neighbourhood dogs might not notice him and, horror of horrors, bark at him.

Our ferocious beast....



Frugal Dad

I was asked some time ago to share a link to Frugal Dad regarding some thought provoking statistics regarding the high percentage of toy sales in the USA. While the larger part of our blog's followers are South African, the information is quite interesting nevertheless and I know I too (when financial circumstances allowed) have fallen prey to the purchasing of unnecessary toys on occasion.

A possible tonsillectomy and potential head-bashing

Sam did not have a great night on Sunday night...continued fever despite the suppository, another vomit-episode and by Monday morning he was so dehydrated that his tongue was virtually stuck to the side of his mouth. First thing on Monday morning we went off to our GP hoping it was not too serious but after examining Sam and being a little concerned about how quickly he'd become dehydrated, he phoned Dr S who instructed us to take Sam straight back to the ward. Dr S gave Sam a quick once-over and said he definitely needed a drip, if we could manage one as both wrists and his left ankle had already been punctured and bruised from the surgery. Dr S did manage an initial success with Sam's left wrist but within seconds the vein collapsed. After much screaming and gagging, he eventually got the drip into Sam's right leg and also drew some blood for testing as well.

Once Sam was settled back in the ward he had a bottle, a dose of Rocephin and a dose of Perfalgon and then took a four hour long nap. He was thoroughly exhausted. Dr S advised that his blood tests had come back clean of any "funnies" and that his feel was that with Sam's throat having already been a little irritated before the surgery, intubating him could possibly have brought on a full-on infection. On Tuesday afternoon we were discharged again, after another dose of Rocephin and a seemingly more comfortable smurf. We continued our post-op surgery regime at home and although Sam's wound seemed to be doing okay (despite needing a dressing change on Thursday after a particularly explosive poo nappy) by Thursday night Sam's nose was sounding really congested again and most of the night was disrupted by his choking/gagging/apnoeaíng episodes. Sam was originally supposed to see his ENT last Friday already but with him only having been discharged on the Tuesday with regular examinations by Dr S (who confirmed that his grommets were looking great) I had originally intended to give the kid a break from Vincent Pallotti and only make the follow-up for the end of this week but after Thursday night's troubles, managed an appointment for this morning. And thank goodness too! So far every nighttime has been plagued with breathing difficulties (including a mid-sleep vomit on Saturday night) and definite discomfort when swallowing.

Sam's ENT confirmed this morning that Sam has quite a nasty dose of tonsillitis, leaving him with rather enlarged tonsils, and also feels that it is more than likely as a result of being intubated while his immune system was already a little compromised. He's put Sam on a course of Augmentyn (which will be totally awesome on his already drug-riddled tummy) but warned that we could be looking at a tonsillectomy soon!! Really??? Arrrrggghhhh!!!  I cannot for the life of me remember when last Sam was even remotely healthy....he started with the croup and viral infections round October/November at least (and that's not including all the ear troubles before that) and we are mid-February now. It is so unbelievably frustrating - I left the ENT's rooms with the usual "thank you's" and what-nots but honestly felt like going around the corner and bashing my head into the nearest wall.... :(

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!