Sam. Conqueror. Overcomer.

On the 15th May 2009, Samuel Christian made his way into this world...two month's premature and in severe respiratory distress. Within hours, Sam was diagnosed with Rubinstein-Taybi Syndrome - a very rare congenital disorder, of which little was known. The diagnosis together with the immediate challenges Sam faced to thrive became our core focus and it was with joy and thankfulness that we eventually brought Sam home, after nine weeks in the NICU.

As time pressed on, it became obvious that Sam's development was falling behind that of his RTS peers. Shortly before his 5th birthday Sam underwent a brain scan and it was confirmed by a paediatric neurologist that in addition to Rubinstein-Taybi Syndrome, Sam also has Cerebral Palsy related to his premature birth, as well as Autism.

This blog chronicles our journey through these challenges...
SAMUEL - COMPLETE IN GOD
Our world has crashed, been blown apart.
This can't be happening....why us? Why now?
Your fragile life shaken before it could barely start,
How do we get through this...please, Lord, tell us how?

Drowning in our sorrow, waiting for answers that just don't come.
Our baby "special needs"? It simply can't be true!
The heartache overwhelms us, we're left feeling cold and numb.
The diagnosis tells us little - these children are so few.

But then we finallyget to touch you, to see your precious face
And all the heartache and questions fade, replaced with love and pride.
It's obvious from the very start you're showered in God's grace,
And with His love and guidance, we'll take this challenge in stride.

When once we couldn't pronounce it, Rubinstein-Taybi's become our norm.
When once the future seemed dark, we now welcome the journey as having an RTS angel brings lessons in unexpected form.

Our world has crashed, been blown apart!
This IS happening....to us.....right now!
We've been blessed with a gift, so precious from the very start. How do we get through this? Here's how.....
By believing in a God, so merciful and great,
By trusting that He's right beside us as we journey through the narrow gate.
By believing His love for us is not determined by a human frame,
By trusting that we draw Him near by merely calling His name. This precious baby we asked God for,
Prayed he'd be perfect and complete.
And, as Samuel means "God hears", He's laid His answer at our feet.

(Nicky de Beer : 27/05/2010)

Friday, March 30, 2012

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....


Monday, March 26, 2012

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!!!

Friday, March 23, 2012

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!

Monday, March 19, 2012

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!

Friday, March 16, 2012

"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!

Wednesday, March 14, 2012

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 Âșc 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.