A sticky situation...

Okey Dokey...so we've gone from croup, to ear infection, to RSV and now, as officially diagnosed this morning, we also have Glue Ear in Sam's right ear thanks to all the muck provided by the one illness after the other. If anyone ever hears me speak/sign/whisper/mime/appear-to-be thinking these words again "I CANNOT WAIT FOR WINTER" I, personally, give the bearer hereof permission to instantly knock me upside the head without any prior warning or notice of intention to do so.

But it's okay, we've only got like another sixty odd days left until Spring.....H.E.L.P!!!

So, moving swiftly along, the new course of action is another few days on oral cortisone with a cortisone nasal drop as well, whereafter we have a follow up next Friday to reassess the ear pressure and, if there is no or little improvement, we are going the grommet route. I cannot say that I am particularly opposed to Sam having grommets after dealing with Meghan's recurring ear infections basically from birth up until a couple of years ago, specifically the pain she went through when her right eardrum ruptured. The only thing that ever brought her relief were the grommets and we even settled on semi-perm grommets the last time which can stay in for up to three years. But, here's hoping by this time next week we'll have a healthy and completely recovered Smurf crawling around.

Sam's struggle to regain his health over the past two months has led him to seek guidance from not one...not two...but three different Bibles - just to be sure, you undersand!

ET phone home....

...from Stilbaai :)

We decided a couple of weeks ago to make another short trip to Stilbaai this passed weekend and I, in turn, decided to stay mum about it because of the uncanny twist of irony that always seems to occur every time I blog about something. I was certain that had I mentioned our intentions, by Friday morning Sam's health would deteriorate and we would not be able to go. Well blog post or no blog post, sure enough on Thursday morning Sam woke up screaming...not crying...screaming and carried on like that for a good half an hour. After a very short morning nap, he woke up screaming again so I thought another ear infection for sure and warned Chris that if we had one more such incident, we'd have to change our plans. But Friday morning he woke up full of smiles and beans so off we headed early Saturday morning. Sam tolerated the four hour drive like an angel, even though he only managed a twenty minute nap the entire trip. He drank his way through two bottles along the road and the half a muffin he ate seemed to keep him content as an alternative to trying to make cereal while driving.

I had checked the weather predictions during the course of the week which, as accurate as always, predicted a 60% chance of rain in Stilbaai so we didn't bother taking Sam's stroller with, thinking it would be too miserable to venture outside. Granted, Saturday was a little miserable with occasional bouts of rain or drizzle but Sunday morning dawned relatively pleasant albeit still quite chilly despite the sunshine. Meghan had been begging to go "fishing" for klipvissies so just before 10:00am we headed down to the beach but with Sam so smothered in fleece tops, hoodies and even a towel for extra warmth, that you could hardly make out the little bundle perched on my lap.

Meghan and Uncle & Cousin Hendrik trying to scare the klipvissie out of it's pool as opposed to actually catching it....

...and it actually worked!

But with the klipvissies trying to avoid the cold water and remaining scarce we took a short walk along the beach...

...gaped in disbelief at the crazy folks trying to surf in the f-f-f-r-r-r-e-eeeezing cold water and then headed home for the awesome brunch Oupa had waiting :)

 

Sam tolerated the drive home again quite well too, with the exception of the last forty or so minutes when he became a little whiny and agitated but nowhere near uncontrollable. In fact, he spent over an hour entertaining himself with the lid of the flask and my barette. He would put the barette into the lid, shake it till it fell out, search for it and then repeat the process over...and over...and over...you get the picture!



Towards the end of last week Sam had begun showing very slight signs of improvement. Even though he was still snoring-choking-apnoeaing his way through every night, it seemed to be easing off just a little but I think we've finally realised the full extent of how weak his immune system is and how important it is to avoid potential triggers regardless of how short or seemingly harmless the exposure is because by this morning he was coughing and vomiting up slime and not only snoring and snorking while asleep or lying down, but even while he's awake and upright.

So it's really quite disheartening that we seem to be going backwards again, with regards to Sam's health. This has been going on now for like five/six weeks and we just don't seem to make any substantial progress. The other problem of course is that with my little procedure coming up on the 11th July (I say "little" with quivering knees and a lump in my throat - a lump not caused by infected tonsils for once) we are leaning more and more heavily towards a postponement. I sometimes wish I could just WILL Sam back to health...don't we all sometimes wish that?

We are still therapy-deprived at the moment. I actually did confirm Sam's PT session for this morning, on Friday, seeing as he seemed to be doing okay but had to phone in at 7:43am this morning...while covered in puke and with a screaming background accompaniant...to cancel. What a totally awesome vision of motherly tranquility and confidence I must have created for our PT :) Although after the number of times Sam's showered our PT and all equipment/accessories within a 2 metre radius with the contents of his tummy, I think they pretty much "get it" by now.

In an attempt to distract you from the rather sorry image I have now created in your minds, I am proud to share that Meghan brought home another great report card achieving 4's for every subject. Why is my tone a little less jubilant that what you'd expect? Because with each evening during the exams ending with Meghan in tears and me sometimes close to it due to utter exasperation at how she could have spent hours upon hours studying but without being able to answer even half of my questions, I asked her to consider how upset she would be if she failed even just one subject or, worse yet, the term and would stress over and over the importance of being properly prepared as the only way to avoid this. Aaahhhmmmm....great theory there, Mom! There's that argument blown out the water! Thank goodness I've a good couple of months to come up with something new...

Welcome Back, Smurf!

We're still doing the congested nose and occasional coughing fits but for the most part of it, Sam The Conqueror is back in full swing, which means untidying whichever room he happens to be in, playing, watching tv and unrelentlessly terrorising poor Biebie (Meg's kitten). Who could have imagined that such a tiny little smidge of person could wreak so much havoc even though still limited to all fours. Drinking and eating is still a little tricky, what with his blocked nose - I've given up on suctioning him for now because it inevitably ends in the v-word.  We have both a Nosefrida and Benny Vac which we use to suction Sam. The Nosefrida is obviously a little more "gentle" but the fact that I am literally sucking Sam's germs into my lungs freaks me out a little. When Sam's mucous levels reach epic proportions, we revert to the Benny Vac, but Brampies is convinced that it is painful for Sam due to all the screaming that always accompanies me using it. So painful that the second you turn the vacuum on Sam starts gagging? Me thinks not. But, just to reassure Brampies I had to do a bit of a weird experiment - yes, you guessed it, I suctioned myself! While it certainly is a really unsettling sensation, I can say firsthand that it is not painful. But with an already low tolerance for unsettling sensations, I decided to limit the Benny Vac-ing as much as possible, so we're relying now on good old Sterimar. If only I could get Sam to blow his nose.

Well, this little smurf motors all over the house on his hands and knees. I think his crawling skills are being super-tuned by his continuously trying to catch both Belle and Biebie...and don't ask me how he manages, but at least thirty/forty times a day he actually does get a hold of them and tries to de-fur them. How he has not ended up with severe teeth or claw marks is beyond me. Belle (being the elder, terribly cantankerous of the two) eventually gets fed up and moves out of reach but Biebie! Poor Biebie! She is so desperate for someone to play with while Meghan is at school that she just keeps coming back for more...and more...and more. Luckily Sam and Biebie hold no grudges against each other and still enjoy playing games together :

Sam manipulating his plastic balls through the bars of the gate for Biebie to chase.

(Never a missed opportunity for therapy, folks.)

Taking a breather :)

(Although Biebie watches Sam's hands carefully so she knows when to make a run for it)

 

I am slightly wary that my little smurf is fact becoming a tv addict. He is doing great balancing on his knees at the moment (although almost refuses to be in a "walking" position anymore) and will

sit like this and watch Brainy Baby for ages.

Completely zoned out!

Another one bites the dust - aaarrrgggghhhh!

I have tried actually sitting with him and working through the colour, number, alphabet, etc games they demonstrate in the dvd, but Sam just won't have it. First of all, if the tv is on you can forget diverting his attention. And when it is off? He continuously points at it and the remote!

A friend asked yesterday how Sam was doing with OT. I said that unfortunately with his being ill we've basically been therapy-deprived over the past few weeks and that although he's definitely feeling a little more confident venturing out and about the house,  he is still refusing to do things like hold his bottle or handle his food, chips, etc. Barely an hour later I was trying to cut a packet of Niknaks off a strip to give to him but at the same time Sam was trying to push close the drawer I was working in. In my haste to free the chips quickly in order to avoid Sam banging his fingers in the drawer, I cut incorrectly and the entire packet of chips went flying all over Sam and the floor. I giggled to myself and thought "Now if Sam was any normal child, he'd be picking the Niknaks up and eating them right off the floor before I could clean them up!"

Sam gingerly picked up a Niknak, studied it for a second....and promptly put it in his mouth!

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!!!!