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!
Sharing the journey of Sam the Conqueror, a medically-complex, differently-abled warrior whose precious spirit refuses to surrender to the limits imposed on him by his multiple diagnoses : Rubinstein-Taybi Syndrome, Cerebral Palsy (Periventricular Leukomalacia and Static Leukoencephalopathy) and Epilepsy.
Sam. Conqueror. Overcomer.
"IN ALL THINGS WE ARE MORE THAN CONQUERORS THROUGH HIM WHO LOVES US : Samuel was born on 15th May 2009, two months early and in respiratory distress. After an initial Apgar score of 1, he was taken to the NICU and placed on a ventilator, together with an undeterminable amount of tubes, IV’s and monitors which made it almost impossible to see the little Smurfie character lying within…slightly blue and only three apples high. Sam was diagnosed within 24 hours with Rubinstein-Taybi Syndrome, a scarce medical advantage as, due to the rare occurrence of the Syndrome and the limited medical literature on it, many individuals are only diagnosed well into adulthood and some never at all. The page-long list of medical/health issues related to the syndrome, while vital in providing a prognosis and compiling a care plan, took a backseat, however, as Sam’s struggle to breathe and swallow became the primary focus of our concerns and prayers, deepened only by the heartache of not being allowed to hold and comfort him for the first ten days of his already traumatic life. After seven weeks Sam was successfully weaned from the oxygen but was still dependent on a nasal gastric tube for feeding, with which he was eventually discharged.
Once home, what should have been a precious time to recover from the stress of the NICU and enjoy a relaxed and cherished time together, instead became a seemingly-endless timeline of specialist appointments, therapies, illnesses and surgeries as that page-long list of medical complexities came into play, affecting every part of Sam…physically, neurologically, medically and emotionally. Yet, despite these challenges and an “ineducable” future being predicted when his prognosis was delivered, Sam showed a delightful potential and eagerness for learning. Unfortunately though, this learning potential seemed limited to his cognitive abilities as, physically, Sam’s development lagged significantly behind that of his RTS peers. A week before his 5th birthday a brain MRI confirmed that, in addition to the RTS, Sam also has Periventricular Leukomalacia and Static Leukoencephalopathy (included under the umbrella diagnosis of Cerebral Palsy), which would more than likely have occurred as a result of the oxygen deprivation experienced leading up to and/or during his birth.
Thirteen years later and with a number of surgeries and medical procedures which appear to be in fierce competition for their own “page-long list” (which surgeries and their subsequent recoveries have left Sam to face his day-to-day life with a residue of unshakeable anxieties and phobias), the boy you meet face-to-face…with his cheeky sense of humour, unfathomable joy and fierce warrior spirit…make it almost impossible to believe that that disheartening brain MRI and poor medical prognosis are of the same kid. As we begin to navigate this journey with a newly aged differently-abled teenager, leaving behind the little smurf whose fears and discomforts could so easily be remedied with a cuddle on mom’s lap, the anxiety of more surgeries and medical challenges now compounded by the universal fear of every differently-abled child’s parent/s (who will take care of their child once their own time here is gone) threatens to become overwhelming. But then the excitement of a horseriding lesson, the sheer delight of spotting a balloon (especially a hot air balloon) or a super silly giggle caused by simply hearing someone sneeze provides a beautiful reminder of the profound joy and courage these children radiate, despite their overwhelming challenges, and it provides the perfect encouragement and inspiration for facing your own. #samtheconqueror
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)
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)
Thursday, May 26, 2011
Friday, May 20, 2011
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”?)
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”?)
Monday, May 16, 2011
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.
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!
Thursday, May 12, 2011
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"!
Sunday, May 8, 2011
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 :)
Monday, May 2, 2011
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"
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