Believing - We Receive

Life's resources have been a little on the low side lately...physical resources are low because fighting a particularly aggressive bout of sinusitis/tonsilitis makes caring for a really sick little smurf fairly tricky, financial resources are low because dealing with ongoing illnesses which in turn call for ongoing doctors' appointments and medication with a medical aid which funds were exhausted about two months ago is also fairly tricky (especially when looking at Sam's scheduled follow-ups with specialists for the next couple of months, not to mention his intervention therapies) and spiritual resources are low as well as a result of not being able to regularly attend services or even find a gap during the day for some "alone" time for prayers or Bible reading. I've tried leaving it till I go to bed, but this hasn't proven too successful :) The danger in this is that the longer you're without spiritual influence, the more often thoughts of "Well, what's the point anyway?" come sneaking their nasty little way in.

So, on Wednesday, I decided it was time to put a stop to this downward spiral and set myself a goal, to somehow manage at least two prayer sessions during the course of the day and to have read at least one Bible passage. The prayer sessions were a little easier than anticipated and the Bible reading took place at the kitchen counter while simultaneously trying to gulp down a sarmie and make Sam a bottle, while Brampies battled with a particulary clingy Sam for a few minutes. Seeing as I have missed a good few daily readings, I decided to start on 15 June and work my way back (it made sense at the time) and I managed to work through the 14 June as well.

A quick side-step : It is important to note at this point that part of my petitions earlier that morning was a request for Him to at least acknowledge that He hears our prayers and hasn't completely forsaken us.

As I was about to head out of the kitchen, I glimpsed the devotional for 13 June. It said :

"Believing - We Receive

If anyone is thirsty, he should come to Me and drink (Jn 7:37)

Are you thirsty? Then drink. "Now this is the confidence we have before Him: whenever we ask anything according to His will, He hears us. And if we know that He hears whatever we ask, we know that we have what we have asked Him or" (Jn 5:14-15). Here are the principles:

Confidence - "the confidence we have before Him:"
Conversing - "we ask anything"
Condition - "according to His will"
Conviction- "we know that He hears whatever we ask."
Consequence- "we know that we have."

I thought - here's the acknowledgement I was asking for.

A short while later I received a text message from Sammy's great-aunty Anthea. She said that she'd put in a request for us to be considered by two of our local radio stations for their respective "random acts of kindness" programs.

I thought - here's the acknowledgement I was asking for.

A couple of hours later our minister showed up for an impromptu visit to see how Sam was doing and to pray for us.

I knew - He hears us.

Now, there's been no miraculous healing going on overnight, no huge lump sum of money anonymously dumped into our bank accounts...what there has been is a slow but steady improvement of Sam's health over the past two days and the comforting knowledge that, despite the saying that when times are hard friends/family are few, we still have family who care enough about us to put themselves out there in an attempt to ease our burdens.

So, Sam is still coughing terribly and his nose may as well have been glued shut with cement, but he's been wanting to play more as opposed to just lying on my lap for hours on end and he's even been rewarding us with that good ol' smurf charm and laughter. I am not expecting much relief for myself until 11 July, when I will be going under for the ENT procedures mentioned previously but as long as Sam is doing better, it's all good. I know my insistance at trying to treat Sam at home may have seemed incredibly unreasonable...not to mention the inconvenience of the "please help" emails I had to send Sam's paed when it looked like we were losing the battle (Dr B's inconvenience, not mine) but that's why I keep stressing the importance of surrounding ourselves with specialists/doctors who can relate to your circumstances on an emotional level, as well as a professional level. Let me give you a prime example : at Dr B's office on Friday, when about to examine Sam, I asked him if he wanted me to remove Sam's shirt and vest. He said it's best to keep both on because Sam will probably moan. I thought - Nah, it's warm in here and Sam seems pretty calm and settled, let me take the shirt off so that Dr B can examine him more comfortably. What do you think happened? Sam started squirming and whining in protest! The lesson? When your doc knows your child as well (and very occasionally better) than you do, you're in good hands :)

 In the midst of all our chaos, Sam has had a haircut...well - half a haircut at least (the reason why there's only a front view..hee hee).

BEFORE :

and AFTER

Okay, so I was wrong!

So, there's a whole new ailment bugging Smurf...in the form of a little RSV with a touch of pneumonia thrown in for that "Aaawwwhhhh" effect. Firstly, I'd like to say a hearty THANK YOU to our medical aid service provider (for fear of some kind of legal action I will refrain from outrightly revealing their name, but will tell you that there is a channel on DSTV with the same name - now I know our South African readers will follow) who, even though born with lung membrane disease and having a congenital disorder which makes him susceptible to respiratory disease, do not feel that Samuel is a candidate for another course of Synergis,which course consists of five/six injections costing approximately R10,000.00 EACH!!! So affordable for the average family off the street.

Secondly, I would like to thank whoever it is that is responsible for instilling the "Oh Woe Is Me" virus within Luke's system, which virus somehow interpreted me asking him to try and limit his presence in the living areas of the house in order to prevent him contaminating the rest of us with his RSV and bronchopneumonia, as a personal attack on his character and a completey unjustified attempt to punish him for some unknown reason and, thereore, rendered my request as completely invalid. So loving life with a teenager at the moment...thankfully we've only sixteen months left until we're done with this stage. Oh No! Hang on, he's male...better add another five years on to that! LOL! Only kidding - just a bit of tongue-in-cheek there, guys!

All jokes aside, Sammy is one sick little smurf. Dr B advised, with written instruction I might add (gotta love the guy) that should there be no improvement by Saturday afternoon we should rather take Sam through to be admitted. However, even though it appeared at numerous times as though Sam was actually getting worse, we decided to push through at home because with a little man whose sensory defensiveness is so severe that it effects even his gut, the trauma of a hospital stay can sometimes completely obliterate the benefits. I have resigned myself to a decision that, should there be no improvement by this evening, we should take him in to be admitted.

Oh, and have I mentioned the fun we'll be having in a couple of weeks time? Not? Well, here it goes....I am, so far, undergoing a tonsillectomy and a little procedure to re-shape the cartilage in my nose in the hope of trying to overcome what has effectively been an uninterrupted, sixteen-month-old battle with sinusitis and tonsilitis. I underwent a CAT scan this morning to determine whether I have something funky going on in my sinus cavities as well, which remedies will be added to the procedure. My ENT feels that having my tonsils out though is a must as they are making my whole system toxic. I was advised years ago (like about twelve or so, but whose counting) to have them taken out, but after hearing from a friend how extremely painful it was to have it done as an adult decided that a twenty-five year old woman having a tonsillectomy seemed far more inconvenient than a prolonged relationship with antibiotics. Now I am thirty-seven year old woman having a tonsillectomy and thinking what a jack@** I was!

Hi-Ho, Hi-Ho.......it's off to the paed we go!

With a temp too high,
And a mournful cry!
Hi-Ho, Hi-Ho, Hi-Ho,Hi-Ho!

Four doctor's visits in four weeks and one day?
For what appears to be the same ailment?
Gotta be some kinda record, right?

You'll never guess......

...what I had for supper last night, guys!

Cottage Pie!

No, Gerber has not added (unfortunately) a tasty new flavour to their range. And, NO, Mom did not try one of her previous stunts by sticking a normal meal through a blender...YUCK! (Have you ever had liquidised mac and cheese? Not pretty!) This was normal....here, let me say it again...NORMAL...cottage pie! With normal ground beef, normal pieces of carrots and peas and,  yes, even rice. And I loved it! What I loved even more though was that at like thirty second intervals at least one member of the family would come and stare at me eating and exclaim in delight that I was actually eating the cottage pie. Now, I know Mom's not the best cook in town, but really guys...her food's not THAT bad that you need such intense moral support. Mmmm...okay, maybe it wasn't really the cottage pie that was the issue coz I kinda remember the same reaction when sharing Mom's banana (un-pureed of course) with her earlier in the day. I am so loving LOVING food right now!

I am also quite thrilled that I could bring a bit of awesome-ness into the house though because everyone's really worried that, even though I've finished my antibiotics and Celastamine already, I am not only not 100% healthy yet but seem to be getting sick again. But what can a kid do, right? Almost everyone else in the house is still ill so my little antibodies are fighting their socks off trying to get me healthy with all the germs floating around in here. It does, at least, make for interesting snoring competitions at night with Pappa Smurf!

Hugs & Kisses from your friend, Sam
xox

WORDLESS WEDNESDAY!

The lengths we go to, to coax a smile from our Smurf!

(or would that be "the lengths we get grandparents to go to, to coax a smile")

Still trying to catch up!

Sam completed his course of antbiotics and Celastamine last night. We almost didn't make it with the Celastamine after the number of times Sam threw up his medicine on the first day, but thankfully our local pharmacist (who knows us so well by now that as soon as they notice us walking in, they already start going to the shelves to collect Sam's meds) quite happily gave us a "top up" to complete the course.

So, our smurf appears to be feeling a little better but still, something seems to be bugging him. He is extremely clingy and his laughter and smiles come a little more seldom now. It could well be his teeth (Yes! Those molars and eye-teeth are still NOT completely through, almost six months down the line) as he is constantly mining in his mouth. It's really quite frustrating not being able to have him tell us what's wrong, although this isn't always the case. When Sam got really ill, I started putting him in our bed at night so that I could try and keep him propped up on his pillows to allow for some sort of less-laboured breathing and also to monitor his apnoea's. Now that he's been feeling a little better, we have been putting him down in his cot again at night (after walking him to sleep first, of course) but without fail, every night, he wakes up roughly at about 10:00pm. I told Chris I am sure it's because he suddenly realises that he's not in our bed, so promptly put him in with me. I could see Chris was a little sceptical about my theory and so when he woke up last Thursday evening, Chris went instead to pick up and then tried to walk him back to sleep. Little Conqueror Smurf was having none of it though and firmly pointed with his little crooked finger to the bed!!! (Yay Me!) As soon as Chris put Sam in the bed, he rolled onto his tummy and went off back to sleep.

By the way, I don't refer to his little fingers as "crooked" without good reason. Apart from Sam's angulated thumbs, we've noticed that (with the exception of three of his fingers) all of Sam's fingers seem to be slightly "different".  His two index fingers curve outwards (almost as if they also want to angulate) while the others seem unable to lay flat. In other words, if you put his hand on a flat surface you cannot press down on five of the fingers as even the knuckles seem to be "humped". I keep meaning to Facebook our RTS family to ask if any other RTS sweeties have this problem, but you know the story by now about my mind-like-a-sieve problem! Anyway, I have to....HAVE to....remember to ask hand-orthopaed about this at Sam's next appointmet, which is in July....uhhmmmm....or is that December? Hee Hee!

We are still trying to catch up on Sam's weight, which dropped from 10.6kg to 10.1kg with his being ill, but his appetite has definitely improved and he is still doing well with tolerating mixed-textured food. He even ate a bowl of freshly cooked veggies last night.

Sam and Ouma, when they came to visit last week (Ouma and Oupa, that is) 

The SUPER cool gate Uncle Hendrik and Oupa built and installed for us, which creates an awesome little play area for Sam while I can do what I need to do in the kitchen.

And an equally SUPER cool tractor, which Oupa made for Sam.

Note the name on the side!

Oh-so Handsome cousins, Hendrik and Dirk, came to visit yesterday. Sam was a little miz, as mentioned, and wasn't too keen to pose for a pic!

(I don't have a clue what that little circle of light is by Sam's head,

only came up on this one photo - weird)

But we eventually managed something remotely resembling a smile!

Now if only we could get all three boys looking in the same direction :)

Third time lucky!

After Sam's croup diagnosis last Thursday and with a little help from some of the prescribed treatments, Sam's symptoms seemed to ease off a tiny bit...with "tiny" being an understatement. I am not sure about Sam, but I am pretty much experiencing a decent dose of cabin fever having being basically restricted to the house with Sam being so sick, with the exception of the occasional trip to fetch Meg from school (although Brampies has pretty much taken on both Meg's and Luke's to-ing and fro-ing to school/college for now) and our doctors' appointments. Thankfully Meg's hockey tournament was cancelled on Saturday (Did I say "thankfully"? At least it would have meant some contact with the outside world) but we unfortunately also missed out on Rian Smurf's birthday party on Sunday, as well as having to subject Ouma and Oupa to a pretty dismal visit consisting of few outings and a house full of patients.

Yesterday was Chris' birthday and how did we celebrate? With a trip to the paediatrician after yet another difficult night with Sam, which ended with him waking before 5am screaming in pain. The remainder of the day was spent with endless v-word cleanups thanks to Sam seeming completely incapable of keeping any food or liquid in his stomach, including his meds! Aaaarrrgggghhhhh!

The upside (and yes, surprisingly enough, there was one) was the paediatrician's appointment. For more than two weeks now (and two GP visits) I have insisted that there was something more serious going on with Sam, other than a cold and even the croup. But there has been a slightly confusing piece to the puzzle which has managed to throw the other docs off - being that not once during this period did Sam have a fever. Admittedly this is rather strange seeing that Sam's core body temp is fairly high and always, without fail, the first sign of serious infection is that he gets a fever...sometimes as early on as two weeks before the onset of any other symptoms. Only once over the past two weeks has his temp even managed to reach over 37ºc (with his "norm" being about 37.2ºc) and that was yesterday morning, otherwise it's been hovering between 35.5ºc and 36.6ºc, believe it or not.

Now, I am pretty sure that Sam has in fact been suffering with some cabin fever himself, because he LOVED having to hang around in the waiting room at Dr S's office and was as bubbly and joyful as always...pretty remarkable when we found out what's been bugging him. When looking into Sam's ears Dr S started saying things like "Ouch" and "Shame" which we figured either meant Dr S's little light examining-thingy was causing him some sort of pain...or he was reacting in sympathy to what he saw. It turned out to be the latter. He said on a scale of 1-10 with 10 being a burst eardrum, Sam's left ear was an 8 and Sam's right ear a 9.5!!! A-ha! F.I.N.A.L.L.Y! By yesterday morning I was really starting to feel quite despondent and hopelessly frustrated because I could see that there was something serious ailing Sam but after two pretty "wasted" doc appointments, wondered if maybe I was really becoming as unnecessarily pedantic as what, I am certain, some people have started believing I am.

Unfortunatley, the high of finally knowing what was wrong wore of soon enough after two failed attempts of trying to get the antibiotic (non-penicillen for now, until we've confirmed Sam's allergy) and celestamine to stay in Sam's tummy, not to mention anything remotely similar to food or liquid. No matter how little we administered at a time, regardless of any amount of dancing and singing to try and distract him from the urge to throw up....everything came spewing out anyway. Eventually though just after 7pm we managed to get half a dose of both the antibiotic and celestamine in, which might have been due to an effectively administered pain suppository by Pappa Smurf which had Sam back to his babbly, joyful self. Sam even managed to take in a little Cera-lyte before bed and for the first time in more than two weeks had the closest thing vaguely resembling a decent night's sleep.

Some random pics taken sometime over the last couple of weeks.....

Sam is never as happy and content as when there is some sort of chocolate treat melting in his mouth! Of course, with his being ill we've had to avoid the chocolate for now but I can almost hear him giggling in delight when next he is allowed to indulge!

Aunty Diane and her Sunday school class made this crown for Sam a couple of weeks ago! It just so happened to perfectly match his little top!

About a year ago, at the very least, we found a dvd at a local factory toy shop called Brainy Baby. Now, from an adult's perspective, the dvd is pretty amateurish (hope I can't get into trouble by saying that) but, with all of the little games/songs/counting, etc being carried out by children (mostly between the ages of 1 and 4) Samuel adores....as in A.D.O.R.E.S the dvd and watches it at least three or four times EVERY day! Sometimes non-stop! He waves when the children wave (the pic above), smiles when they smile, does a little squirmey-jiggy type thing when the dizzy bird puppets dance and grabs my hand to either sign the alphabet next to the screen when it comes on or quickly display his foam set of numbers next to the screen when the counting comes on!

 

Relaxing on Pappa Smurf while watching!

Completely and totally mesmerised!

The best R29.00 we ever spent!!!!

The V-Word Slump

Over the past couple of weeks I cannot tell you how many times I have mentioned my surprise that Sam has been so healthy for so long (TSC surgery not included under "unhealthy"), especially as everyone in our house has done a fair round with flu/bronchitis, etc. I even literally touched wood a couple of times when saying it...because my experiences tell me this works? As posted recently, I had Sam at the doc last Thursday because, after all his difficulty breathing, etc at night, I was pretty convinced there HAD to be something brewing somewhere, be it nose, ears, throat, lungs! I was wrong...well, at that point in time at least. Sam's mucous build-up progressively worsened, albeit remaining clear, and without a fever. By yesterday, after several sleepless nights, he also developed an ominous croup-sounding cough but still no fever. Now, what could be more trying than taking care of a sick and miserable little smurf? Taking care of him while YOU are also sick and miserable!! There has been very little actual sleeping taking place in our home at night, both Meg and, especially, Luke cough through a large part of the night and in our bedroom Chris' sleep is alternately disrupted by first Sam's coughing-cum-choking episodes and then my own coughing and spluttering. Add a whole lot of assignments and tests in prep for next week's exams to that and you've got yourself a surefire recipe for AAAAaaaaaarrrrrrrggggggggghhhhhhhhhhhhh! [Rolls eyes and lashes tongue out in fake suffocating-motion for emphasis]
 
I have this really annoying tendency to rush Sam off to the doc the split second I notice something which might be a potential illness and always with the same result - that there is little they can do besides some occasional symptomatic relief, unless it becomes a full-blown infection, in which case they will only then prescribe an antibiotic. I really do know and believe this is always the right course of action, yet cannot seem to break this premature behaviour even though I know there is little the docs can do and even find myself starting off the consultations by confessing that I have perhaps rushed in a little too soon. The result? Inevitably we will land up back at the doctor a few days later with a full-blown pneumonia or viral infection which can then finally be treated. So, after yet another "wasted" appt last Thursday I was not sure when Sam's symptoms changed yesterday, whether I should make another appointment or wait it out until there was a devastating fever or at least some green mucous to work with. The thing is Sam's fevers tend to come flying in suddenly at ridiculous temperatures instead of building up slowly and usually results in a hospital stay and with Meg having a hockey tournament on Saturday morning, Sam's Ouma and Oupa coming to visit and Chris' birthday on Tuesday I thought, perhaps....just perhaps.....this time we can catch whatever-it-is before we're already on our way to the hospital's emergency unit in the middle of the night.

Well, would you believe that we got it right this time? (Well, for now at least) I gingerly made another doctor's appointment this morning where we discovered that the whatever-it-is happens to be another bout of croup, but still in the fairly early stages which is why there is no fever yet. With the help of an antibiotic nasal ointment to clear the irritation there, an eye drop for Sam's slightly gooey eyes and, most importantly, some cortisone to neb Sam with we should, with loads of luck, be able to avoid the hospital this time. Or so you'd think, right? Another touch-that-wood bit of thankfulness was Sam's scarce v-wording. Note I say "was". What with the coughing and Victoria-Falls-like post nasal drip happening at the back of Sam's throat the gag reflex and, hence, v-wording are back with a vengeance, savouring its most dramatic appearances for when I have to try and neb him so, so far today I have been vomitted on three times (I can say the word "vomit" now because I know I can't jinx something that is still happening) with one particularly pleasant throw-up taking place in the car again, while waiting for Meg outside school. Almost as delightful as the throw-up that took place about five minutes after taking Sam out of the bath to clean him from the first throw-up.

You know, we have been through a lot with Sam...the surgeries, pneumonia's, kidney and bladder infection, seizures, developmental delays...yet nothing destroys my spirit like the vomitting. I can't explain it, it's like I see it as a personal attack on me...my ultimate enemy! Of course, as I type this I realise how silly that sounds but I guarantee you when it happens again tomorrow and I sit there, not only covered in vomit but also in frustration at the nutrition and medication painfully administered but which Sam would have just expelled from his tummy, in resignation at losing another battle to the vomtting and, the real issue at hand I dare suggest, the fear that I cannot do this and  that I am failing Sam, then it doesn't feel so silly anymore...just really sad.

On a high-note, particularly high in actual fact, Chris underwent a rigorous appointment with the cardiologist on Monday and although Chris' cholesterol levels are dangerously high at the moment (but not nearly as high as what the cost of appointment did to Chris' blood pressure) there seems no need for any major medical intervention at this point, provided Chris is prepared to make a drastic change to the amount of exercise he gets at the moment (so easy to say for someone not living with our feisty and endlessly demanding little smurf) and, more importantly, Chris' diet. Poor Chris! We are not particularly healthy-eaters in our home and love decadent treats but still, for Chris' sake, are all going to make a conscious effort to adapt our diets in order to make it easier (well, most of us that is - thanks for the jam donuts, apple crumble & cream and potato crisps so far this week Brampies). The scary thing is that, when I really sit and consider it, my diet is shocking. Mostly during the day I tend to grab whatever is quick and easy to shove into my mouth, usually consisting of cereal bars, rusks, biscuits, etc and I've never bothered to even have my cholesterol checked purely because of classic stereotype misconception that it's usually the more mature males that are afflicted by dangerous cholesterol. I'm surprised I haven't been slapped in the face with a heart-attack yet? Oh no! Quick.....TOUCH WOOD!

Aaaannnndddd....a few steps forward again :)

Remember me whinging roughly about fourteen months ago about our pc crashing and losing not only most of the pics we’d taken over the last four years, but also all my emails and email addy’s due to a teeny weeny oversight on my hubby’s part? Well, if you don’t remember, I certainly do. So you can imagine my horror when, on Tuesday morning, I put on the fourteen-month-old pc we’d subsequently purchased only to see it get caught up in the same restart loop the previous one went through when it crashed! Oh my fragile heart! Meghan and I mourned the loss of our respective Sim-families we were sure we’d lose through the pc’s breakdown. On Wednesday was a national voting day here in SA, so after going and making our mark (or marks to be exact) we quickly drove by the computer place and, luckily, it turns out it was just the pc’s power supply which died. I say luckily, but it cost a pretty penny to have the power supply replaced and I am so hoping that this one manages to exist longer than fourteen months.


On the subject of voting, our little Conqueror Smurf has started becoming extremely strong-willed and often tests our boundaries with regards to who’s actually in control…and of course it’s him. At the voting station on Wed, he refused to offer up my ID document for scanning in order for me to vote, so we had to perform acrobatics to have the lady scan my ID without Sam letting go. At the shops a couple of days ago I bought him a packet of marshmallows to entertain himself with while I quickly gathered my purchases together and again he refused to release the packet of sweets for the cashier to ring up and when I eventually wrestled them out of his hand, he started screaming blue murder. He is extremely adamant about what he wants and, non-verbal or not, makes his feelings inexplicably known. We take the bad along with some good though because, even though it makes handling him in public places, in particular, pretty challenging, the fact that he so clearly expresses what he wants using only hand-gestures and singing/grunting/Sam-glish with the occasional tantrum thrown in when additional emphasis is required, is fairly encouraging…in a stressful, zany kinda way.

Other than his unique way of communicating, Sam seems to be daily acquiring new skills again, in addition to having regained his sitting ability. He is still displaying quite severe bouts of startling when I first put him down on the floor to, for instance, play…but the attraction of whatever toy is lying nearby soon overpowers his feeling threatened and we’ve had no additional bumps on the head since my last post about this. He loves…as in ADORES…books and every mealtime, at the least, is an opportunity to go through a few books and look at pictures, point items out, clearly say words, etc. Of course, these books all involve animals mostly, or children at the very least…two things which he eagerly interacts with. So for a few days I concentrated on one particular thing, ie. Pointing out the dogs’ eye in his Dog Peek-a-boo book, and every day I would try and ask him to show mommy the dog’s eyes and by last week he was able to point out the dogs’ eyes. So we remained on that newly learnt skill for a few days and then I asked him if he could point out Mommy’s eyes…which to our delight he did…and then had him point out Barney’s eyes, Daddy’s eyes, etc so that he definitely understand the concept of “eyes” now and also understands that they are something not only unique to dogs  We are now concentrating on “nose” and for the first time this morning he clearly pointed out my nose. He recognizes several items in his Baby’s First Word Book and when you ask him to, can point them out, for eg. Baby, dog, cat, cow. Sometimes he has such an amazing awareness of what is going on around him that it temporarily stuns me because firstly, he sometimes seems more “present” than what Luke and Meg were at his age and secondly, because it is just so unexpected. He has such an incredible understanding of what he is doing like when he is going to do something “naughty” like throw whatever’s lying on the bed onto the floor, he’ll choose an item, look straight into your eyes, shake his head, throw the item and then look at you and laugh that mischievous, shoulder-hugging giggle. Chris and I were sitting with him on the bed this evening, after a multi-handed struggle to dress him after his bath, which bath also ended in wailing protest, while he amused himself with throwing all of our things “overboard” and, with loving tears in our eyes said that, we could not imagine our lives without him. Even though there are so many rough and challenging moments, his remarkable little personality just kinda makes it all worthwhile. Even after that, while I tried unsuccessfully to walk him to sleep for half an hour while he physically fought me to avoid his dreaded slumber, he eventually caved in and moments before falling asleep blessed me with some “ooohhhiinggg” and “aaahhhiiingggg” and a little giggle and then promptly fell fast asleep. Well, at least I think it was aimed at me because by that time his 10.6kg body is dangling at an unimaginable angle from my arms, at great detriment to my poor back, while he strains to keep sight of the ceiling fan…so his pre-slumber serenade could well have been meant for the fan. Nope, we’re being positive right now, so conclude that it was meant for me.

On the health-front, as mentioned previously, we’ve all been battling to fight off the flu or whatever other respiratory ailment has been trying to infiltrate our systems. At this present moment, both Luke, Chris’s and Meghan’s systems have caved, particularly Meghan’s, who has spent the last two nights coughing her way through the most of it. I was convinced that Samuel was well on his way down this path as for the past couple of weeks his OSA is back in full force and effect and he seems quite severely congested at night. Chris, for far more serious reasons, had a doctor’s appointment this morning so I took Sam with and asked him to check Sam out, convinced that he was going to confirm some tonsillitis or a viral infection at the very least, but surprisingly he reported that all Sam’s usually compromised areas (lungs, throat, nose, etc) all look good. So the only conclusion we could come up with is the same reason for the last particularly severe bout of OSA, being the reflux, with the now thinner consistency milk causing excess mucous as he refluxes during the night. Sam’s reflux is still pretty severe and at least twice a day you will hear him refluxing – it makes quite a distinct, inwardly-hiccupping kinda sound…just thankfully without the v-wording for now. He also has actual hiccups countless times during the day so it appears that, although many of Sam’s RTS brothers and sisters outgrow their reflux by the age of one or two, Sam is not going to follow this trend. He has been extremely adventurous lately though with trying out differently textured foods and has, over the past couple of days, eaten some pork sausage (not pureed, obviously), toast, digestive biscuit, skinned orange, French fry/chip and some Milo cereal (although I left this soaking in the milk for quite some time to make the cereal pretty soggy).

The main reason why Sam piggy-backed on Chris’s appointment at the doctor"s was that Chris has been experiencing some pretty distressing chest pains over the past few weeks, which pains worsened to a pretty scary level yesterday afternoon when, while taking Sam for a walk, he and Meg decided to have an impromptu race. The doc had Chris do some cycling for him so that he could monitor his heart rate, etc and after noticing an unusual pattern has referred Chris to a cardiologist with whom we could only get an appointment on Monday. So we wait anxiously for Monday’s appointment and pray that whatever is causing the problem, is not too serious (although are any heart problems “not too serious”?)

Happy 2nd Birthday Sam and way....WAY....too many pics!

And when I say "way too many", I mean like in W.A.Y. too many. And I've only posted about a fraction of them.


So our little Conqueror Smurf is officially (as at 5:24pm today) Two Years old and One Day. We toyed with the idea of throwing him a proper party but thought it best to leave that until a time when he can really grasp the whole "it's my birthday" concept. So instead, celebrated with a little get-together with our extended family, which was just as lovely. And without any further ado....the pics.

 Ooohhhh...look, Mom! An envelope!

 Ooohhh...look Mom, a card!

 Okay, now as much as I love birthday cards, the rest of these goodies are starting to look so much more interesting. Here Mom, you hold this while I dig in!

 Yay, a xylophone from Aunty Cammy & Uncle Damian. Two of my favourite things wrapped up in one...banging and music, although these stick things look far more complicated than my plastic boats/cups.

Seriously Uncle D? This is what I gotta use to hit it with?

 Mmmm...okay, lets try one stick-thing and one toy guitar.

 I say phooey to the stick-thing, lets go with the guitar.

 Oh my goodness folks, I cannot tell you how many of these pics us kids had to pose for.

There were more flashes than at a fashion shoot. Well, it all started out kinda fun.....

 But could ya blame a guy for getting a little distracted?

 Chrisna, Meg and Meg!

 Our two Meg's!

 The "naughty corner"

It took longer to get this bunch to sit still than the kids!

 At long last, the moment I was waiting for!

No, not the blowing out of the candles...yes, all two of them.

Quick guys, help me get rid of this flame...

...so that Brampies/Oom Oupa can cut the cake....

...so that I can eat it!!!! Yay, delish!

This would've been a great family pic save for the teenager who was making like a bat

(and hiding in his cave)

Now you KNOW you've thrown an epic party when it's been attended by none other than Frikkie Bellville!

And what's even better than a xylophone?

Why, a floating xylophone of course!

Once Luke felt safe from the uncool, photo-taking adults he ventured out into the light for a little guitar instruction from the Birthday Boy!

(Boy, aren't teenagers loads of fun?)

And some random pics we took of our little smurf recently!

Happy Birthday Samuel!

You are such an amazing inspiration to us,

Through each illness, surgery, challenge and trial,

your spirit remains strong and passionate.

We cannot imagine a world without your giggling and uncontrollable laughter,

Without your sweet voice,

Without your love,

Without your wisdom,

Without your joy,

Without your many Sam-erisms,

Without the lessons you teach us daily,

We cannot imagine a world without YOU!

Caught in the act....

The second I put Sam on the floor in our bedroom, he makes a beeline for the en-suite to immediately get to work on throwing his stacking cups into the shower. What, you might ask, could he possibly find so entertaining about that? I have not the foggiest clue! In the beginning he would spend a good few minutes first banging the cups on all the tiles, which did make at least a little sense what with his OCD banging of things...but now he just goes straight to the "main attraction". Guess I should be glad that he can't yet reach the toilet as this can only be an indication of what's still to come :)

The past few days have had a bitter-sweet tone to them as we near Sam's 2nd Birthday (on Sunday). While it's awesome to think back on all the challenges and trials we've faced and conquered over the last twenty-four months, looking ahead at the future challenges and trials lining up over the next seventy-something years is a little daunting! Who'm I kidding? It's just plain terrifying...the thought of what's to come, that is, and not the thought of me being one-hundred-and-seven years old. Actually, that IS pretty terrifying too!! Anyway, moving swiftly along....

Having this ongoing, internal struggle about where is the "right place" for your head to be is just simply exhausting. Don't expect too little from Sam for fear of under-stimulating him. Don't expect too much from Sam for fear of frustrating and disappointing both him and us when overly-optimistic goals are not achieved. How do you figure out the correct balance? Are WE (Chris and I) capable of figuring out the correct balance? Is there a correct balance? Every now and again I believe my head to be in that "right place" and then something...or more likely, somethingS, go a little differently to what I had envisioned and I just lose my place and occasionally, like now, it takes some time to find my way back there. I think the first step I took in that direction was (as mentioned in my previous post) completely aborting this whole idealistic notion that we as a family and as individuals are heading towards this wonderful, highly anticipated, victorious utopia over the battle that is RTS where we will one day eventually function as a "normal" family again. This is not at all to say that I have not yet accepted my son as being disabled/differently-abled, but merely that I have not yet found peace in mastering the "perfect" way to mother, nurture and prosper my disabled/differently-abled son. The good news is that, usually (fingers crossed), these low days seem to fix themselves as soon as whatever trying issue we are dealing with at that time, also seems to lessen or disappear. For example, like the fact that hearing constantly about how our RTS sweeties are prone to temporarily losing one or more abilities/skills once a new one is mastered, does still not quite prepare you for when your little smurf finally learns to crawl but then somehow loses the ability to sit unsupported! I mean, really? It's not like he has THAT many skills to play with in the first place...couldn't he have temporarily lost the ability to gag? Hey, I'd genuinely settle for even a TEMPORARY recession on that one. Or how about the swift hand co-ordination he masters when adeptly pinching a handful of hair? I could most certainly have come up with way more creative abilities to offer up for a short time. But, alas, it is apparently not up to me so for now we have had to resort back to propping him up with cushions when seated on the floor after him having bumped his head quite severely on three different occasions over the past few days, when he just seems to forget that he can actually sit and flops backwards. It's really quite heartbreaking and makes you begin to fear even bigger milestones, like walking, in case they come with just as large regressions.

But enough depressing regressing for now :)  

In the midst of all this doom and gloom, conqueror smurf is still making some headway at least in other areas, aside from throwing his toys into the shower! A while ago I pursued sign language quite aggressively with Sam but despite all my efforts, he seemed to show little aptitude for it. Recently, however, he gave me a clear indication that he might now be ready for us to try again when, after watching the Tweenies perform "Old Macdonald" for about the fiftieth time in a row, he imitated quite distinctly their actions (which are almost identical to the actual signs) for duck and cow. He also automatically assumes the two-fingered piano pose the second you say the word "chopstix" to him (thanks Barney) and will politely commence a very charming rendition of the song, air-piano style! The only snag here is that Sam cannot lift his arms even up to shoulder height so you have to watch impeccably to determine whether he is doing the action for chopstix or for cow, as there is barely a two centimetre distance differentiating between the two. 

As far as therapies go, we are still concentrating on OT at the moment as it really does seem to be having a huge impact on Sam's SID. There has been a slight setback after Sam's three falls, where he has become a little fearful again of being placed next to certain objects, etc. but hopefully we'll move through this quickly. It is still quite frustrating having to juggle, due to financial restraints, between which of Sam's therapies he requires the most at that given time and it is something that I believe greatly effects how you feel about your competency as a parent so it was with a little bashfulness and quite a sad heart this morning that I had to advise Pippa (Sam's OT) that I would have to replace at least one of Sam's weekly OT sessions with a PT session soon. I am currently reading (or trying to) Martha Beck's "Expecting Adam" and have recently read through a passage where she writes some angels are invisible, many aren't. Well, Pippa is one of those that aren't invisible because, without a moment's hesitation, she told me that as Sam is doing so well with OT at the moment and it is obviously having a wonderful impact on him, she would hate for him to have to miss any sessions and would rather charge us a discounted tariff in order for us to be able to afford his weekly OT sessions, as well as fitting his PT in as well. How amazing is that?

Talking about angels, since Sam started crawling he has been very scarce at church, with Chris and I alternating Sundays so that one of us can attend and the other can stay with Sam. We are not yet sure how well having a crawling Sam in church might pan out but are determined to give it a bash this Sunday so watch this space for the result!

And in closing, a pic of Sam giving Barney a ride on his "wheels"!

HAPPY MOTHER'S DAY!

A very Happy Mother's Day to all our followers and fellow bloggers! A friend of mine sent a very sweet text message this morning about how a Mom is also a chauffeur, a cook, a nurse, etc. I wanted to add to that list the following : catcher of puke, poo analyser, urine gatherer, gag reflex preventer, apnoea detector, reflux inhibitor, sensory buffer...and so on and so on...but then the text seemed to lose it's charm, so sticking with the original roles for now :)

Sam has been a little under-the-weather over the past week or so. I am watching him closely, hoping to catch the slightest sign of an oncoming illness as there have been minor indications that this might be the case with a particularly stuffy nose at night and a green gooey discharge from his eyes which, although quite common to many of the RTS kiddies, is something Sam only suffers from whe n struggling with a viral infection. But, if a potential illness is at the root of his being unsettled and fussy, he is somehow managing to keep the more serious stuff at bay so I am hoping and praying that health will prevail. I still feel strongly that the thinner consistency milk is contributing to his returned OSA and snoring at night and have had to resort to basically putting him to bed on an empty stomach with his last bottle being almost three hours before he goes to sleep. This does mean though that he wakes up ravenous. One morning last week I lay listening to his tummy grumbling for almost an hour before he eventually woke up which is a little tough for me because I know he does not yet eat close to the amount of food a typical two year old would consume in a day, now to have him going to bed "hungry" on top of THAT worries me. Still, there is a definite improvement with the OSA and snoring on the evenings I stick to this rule.

Yes, so in exactly one week our little smurf will be two years old! The morning of 16th May is going to be glorious because Sam's paed told us in the beginning that the first couple of years are the most difficult and you cannot go saying something like that to an over-emotional, exhausted, borderline neurotic mom and expect her not to take it literally, can you? Of course not :) Wouldn't it be absolutely lovely to have that kind of timeline though? But we don't, so instead we celebrate the challenges and trials we've conquered so far and prepare ourselves as best we can for the challenges and trials the next two years will surely bring. Bring It On, I say...albeit with trembling knees and the most atrociously faked confidence.

Sticking with past conquests, Sam's crawling is still fascinating us...but is now also keeping us frightfully busy. He explores EVERYWHERE and gets into EVERYTHING! Almost our entire house is carpeted, with the obvious exception of the bathrooms, kitchen and a small area in front of the fireplace and of course these are Sam's favourite places to be as tiles + plastic object = joyful, delightful banging! As much as what I so looked forward to Sam reaching this much anticipated milestone, I knew that with it would come even more required attention and care. Of course, having a house that is split on three levels makes for even more stress as, even though each level is only three steps apart, three steps are certainly enough to cause a little, fairly unco-ordinated smurf to go tumbling and, even more horrifying, break something. And the fact that he is super-quick on those little hands and knees doesn't help either. Thankfully, for whatever reason, he has not yet attempted to crawl head first down any of the steps and, quite surprisingly, will stop at the edge, contemplate it for a while and then turn around. This is so weird because he has on several occasions tried to simply crawl straight over the edge of the bed and displays absolutely no fear at the distance between the bed and the floor. So his newly acquired mobility means even less "free" time for me to take care of the usual daily tasks but does create more stimulating explorations for Sam around the house.

 I leave a number of Sam's toys on the floor for easy access but this, of course, means our home looks like a mini-train wreck for the major part of each day.

 It's not too clear in this picture, but Sam has started making blowing motions with his mouth. Just in time to blow out his candles next Sunday...nah, probably not! But still kinda cute.

 He is also spending a fair amount of time on his knees which, although in this picture he is holding on to the bed, when he manages it without support is great for developing balance for walking later. At this point his overall balance is still quite poor and he topples over quite easily.

 One of the first things he always does when on the floor in the lounge is goes for the box of Jenga blocks on the shelf, he then promptly knocks them onto the floor but then ever so sweetly tries to put them back on the shelf. With Sam's initial oral aversion he would not take a dummy or teething ring and the Jenga blocks, which are made of a fairly soft wood, have proved to be a satisfactory substitute as he almost always has one in his mouth. The softness of the wood seems to provide just the right amount of sensory resistance for him, without hurting him but this does mean that the entire box of blocks, apart from being hopelessly incomplete now and distributed throughout the entire house, is also covered in tiny elf-like tooth indentations.

 Some more knee time.

 And is this not one of the areas in the home a tiny smurf should most be avoiding? Well, Sam is not interested in the "shoulda's" obviously and spends most of his time banging on the tiles or the grate of the fireplace. So guess whose going to have a cold home this Winter?

 Some pics of Meg's new "baby", BiBi! Sam has of course christened BiBi with at least two or three good helpings of hair pulling. Thankfully BiBi has become extremly wary of Sam which makes for some adorable entertainment watching Sam chasing her on hands and knees.

 BiBi took an instant liking to Sam's high chair and, in an attempt to keep her off it, Meghan tried to get her used to her own doll's high chair. It distracts Bibi for a short time, but it isn't long before you find her curled up on the seat of Sam's high chair.

As I mentioned previously, my mom spent the last twelve days with us before heading home to Pearly Beach. For Mother's Day I bought her a lovely little photo frame which says "I love Granny" on it, but couldn't find anyplace that could print a photo on time for me to actually make it part of her gift. (Obviously it's a fairly popular idea?) Anyway, this is the picture that was meant to have gone into the frame. It took close to 30 shots to get all three of these rascals smiling at the same time, especially with Sam sneakily turning round at random intervals to make a grab at Meg's hair. Sam's hair pulling and, especially, biting has become quite a challenge to deal with...but that's a post for another time :)

A super quick catch up...

Things have been very low-key in Smurfville over the past week. As our readers from the Western Cape will know, the last couple of school weeks have been a little helter-skelter. The first term ended at the beginning of April followed by a short five day holiday after which the kids returned to school for just under two weeks, before another week long holiday. So it's been a little challenging getting into the swing of things again, especially with the sudden onset of what appeared for a few days to be full-on Winter. Hallo? Uuuhhmmm, anyone spotted Autumn anywhere? You know, like the BEST season of the year when its still nice and warm in the days but cool and comfortable in the evenings? Anyway, why is this significant? Because our smurf does so love change, so having our routine so erratic over the past couple of weeks does not really help much. Nevertheless, minus that minor inconvenience, my mom is spending a couple of weeks with us which, it being a school break, did help hugely with Meghan who has basically had her Gran's undivided attention for exactly a week now and is thrilled at having a willing companion to play uncountable rounds of cards, general knowledge quiz's, puzzle building and, last but not least, to help out with the brand new kitty we brought home on Saturday, given to her by her dad for her birthday. I will definitely post some pics of the kitty soon, who is pretty darn adorable, but my battery is telling me I only have 19 mins power left so hoping to publish this post before then. Hopefully by that time "kitty" will also finally have a name as so far, since Saturday, her name has gone from Mickey (she loved watching the Hot Dog Dance with Sam - the kitty that is, not Meg), Minnie, Minky, KC (Kitty Cat) and is currently branding the Justin Bieber-derived title of "BiBi". 

16 mins to go!

So, other than entertaining Meg, having my mom here has also meant that Chris and I got to do some shopping while being able to spare Sam the experience, got to take Meg to a movie on Wednesday (Hop - absolutely LOVED it, so cute) and, most importantly, eventually made it to the twice-postponed, seemingly unobtainable goal of.....you guessed it....going out for supper...just the two of us!!! Woooohooooo! So, this very important event took place last night and the entire evening out tallied a total "away time" of one and a half hours, but it was soooooo worth it. It was like we couldn't speak enough to each other, it was absolutely wonderful to spend some alone time with my hubby and catch up on whatever seemingly-trivial news we've each missed out on over the past twenty-three months (YIKES!).

Speaking of catching up, this will have to be the end of mine as I have just eleven minutes battery power left but in closing, would like to introduce you to Sam's Guardian Angel...St Raphael!

St Raphael

which means

"God Hears"