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)

Wednesday, March 30, 2011

Completely Unreal!

Samuel just vomitted.......

Feeling G.O.O.D.

So, our little Smurf iS becoming quite the PC addict...(can't imagine where that addiction would come from - nudge nudge wink wink, Chris). A couple of night's ago he was quite content to sit on Dad's lap and watch various kiddy videos like The Wheels on the Bus and Five Little Monkeys Jumping on the bed.




Meg's friend, Kaylee, gave Sammy the most adorable little hat...my son is such a charmer where the ladies are concerned. We tried it out and he seemed to tolerate it quite well even though he usually doesn't take too easily to caps, etc. And it did give him a very adventurous, Indiana Jonesy type of look.



When Sam hits a negative sensory overload he, as you all know by now, usually throws up. When he gets too excited he bites! He bites sore! So, when watching him model his IJ cap the other evening, we all started laughing and of course, Sam munched those little teeth into dad's shoulder.


Talking about sensory issues - Sam had his very first OT session today and, while trying to remain realistic and not get too excited, I am so hopeful and confident that we are on the way to helping him (not to mention a little sad that we weren't able to seek this kind of help a bit sooner). Nevertheless, we have made a gigantic step in the right direction and it feels G.O.O.D. We found out many interesting things this morning in our little lecture about Sensory Integration like the fact that sensory defensivess can even have as severe effect as influencing one's gastrointestinal function, not to mention sleeping habits (no surprise there), balance and, wait for it....even reflux. Sam's inability to use two hands simultaneously which had us stumped many months ago can even be related, as well as his jumping, knocking and most definitely the biting.

So his OT went over the brushing technique with me (which Aunty Mandie had already showed me and had spot on - every considered a career in IEP Aunty M?), as well as the deep pressure therapy on joints and in his mouth. In actual fact, the OT demonstrated the techniques on ME...and it was strangely soothing!!! As it took an hour and a half just to assess Sam, we begin proper therapy only next week, other than me continuing with the brushing technique, etc every two hours as well as having Sam sleep under a weighted blanket now. Can't wait for next Thursday.

Other Smurfy News : we are going to attempt a short 2-day trip to Stilbaai on Sunday but have warned the kids to be prepared in case Sam's throwing up remains so excessive, in which case we might have to cancel on short notice. The only thing worse than sitting in a pool of vomit for twenty minutes, is sitting in a pool of vomit for four hours!!!!! I am so tempted to post how long it has been since Sam last threw up, but every time I do that he throws up, without fail, within hours. I WILL tell you that it is more than twenty-four hours and just slightly less than forty-eight hours (oh please don't let that count as "telling").

 And, in closing, a pic of our very-much-needing-a-haircut Smurf!

Monday, March 28, 2011

Caution! Downpours with a chance of flooding!

The NSWS (National Smurf Weather Service) has issued flood warnings for Smurfville in the Western Cape caused by Cyclone SamSmurf...

From the NSWS :
  • Approximately 2,880 hours ago Smurfville was hit by a low pressure system bringing with it heavy torrential downpours.
  • The downpours continue on a daily basis, resulting in devastating floods throughout Smurfville and causing extensive damage to carpets, multiple car interiors, multiple lounge suites and bedding, not to mention onslaughts at one or two random public places. 
  • Residents of Smurfville are fast succumbing to feelings of hopelessness and desperation as they struggle through every day life amidst knee-deep floods and the unrelentless downpours.
  • The floods are expected to continue for several more days, if not months, unless some sort of urgent flood relief is sourced.
For further details pertaining to flood relief donations/assistance, refer to wwwww.Don't-mind-me.I-talk-nonsense-to-cope.com

Sunday, March 27, 2011

Extremely Embarrasing/Awkward Place to Vomit - No. 3

I absolutely HAD to mention that Sam had had a few vomit-free days, didn't I? Friday night for no apparent reason, he just started throwing up while sitting on my lap...no gagging or coughing first, no trigger whatsoever that I could see. I thought that maybe it could've been the one Nestargel bottle I'd given him earlier that afternoon. He's been drinking thin liquids ever since he had the tonsilitis because, with his sore and irritated throat, that thick liquid just made him gag and cough more and, at first, he seemed to be doing quite well without the Nestargel. But he's develped a "snore" again at night and battling with OSA which, we figured out through trial and error when he was much younger, was all related to his reflux. So anyway, after a particularly bad night on Thursday I decided it's back to thick liquid again, at least before he goes to sleep. But he definitely takes longer to digest the thickened milk, so not sure if this could have played a role.

Saturday afternoon we headed off to the shopping centre as our little smurf has finally outgrown all his 6-12 months clothes. He was quite sleepy at the time and in need of a nap so I'd hoped he'd fall asleep while being pushed around in his pram. Hope Schmope...before too long he started moaning and all of a sudden threw himself into a full-blown Sammy Scream Down...and, what do we know happens when Sammy screams? Sammy vomits! And the fact that it was the end of the month, on a Saturday afternoon when the shops are at their busiest wasn't about to deter our little smurf. Chris had wondered off in the opposite direction with the pram, which also had Sam's bag containing his blanket and spit-cloth which I could at least have had him vomit into as opposed to throwing up - super projectile style - all across the floor! And, the added benefit of being in a busy shopping centre at the time, was that I couldn't quickly make haste for the entrance and escape to the car...we first had to walk through the shopping centre covered in vomit!

I am soooooo tired of talking about vomit...as I am sure you are sooooooo tired of reading about it. But, the reality is, it pretty much dominates our lives at the moment. I cannot wait.....with a capital YES PLEASE, for Sam to outgrow his throwing-up, but for that to happen Sam would have to outgrow his reflux (mmm...not too impossible) as well as the sudden and full-blown manner in which he throws himself into being upset! Nope, this one I don't see happening soon.

Thursday, March 24, 2011

That darn "Spoke too soon" phenomenon!

If I had a cent for every time I've heard the phrase "I spoke to soon" over the past few months, I'd be one rich lady! Don't the STSG ("Spoke Too Soon Gremlin) and Murphy EVA go on vacation?? It was barely a week since I last posted about Sam being on the mend and here he is, all snotty-nosed, sleep deprived and grumpy again. For now it appears as though it could just be a simple cold but, as all our RTS momma's out there know by now, the words "simple cold" and RTS rarely make it into the same sentence. We are however going to stay positive for now and pray Sam manages to keep anything more serious at bay.

The past week has whooshed by at such a speed, I can hardly believe it's almost weekend already - probably due to Monday's public holiday. The first school term is also coming to an end next Friday, how is it possible we're already ¼ way through the year? Meg has thankfully completed all her tasks/tests for the term, while Luke has only just begun with his exams and has five more to go. 

So, what has been happening in our Smurf's life during the past week? The weekend, as always, was pretty low-key and uneventful...on Saturday night we rented a DVD for the kids (can't for the life of me now remember which DVD), Sunday morning Smurf and I ventured out to church with the rest of the family as (quick, someone cover STSG's and Murph's ears) we've had a few vomit-free days. Thankfully I was able to hear a decent amount of the sermon as, even though Sam became restless before the service had barely begun, the nursery has now been rigged with speakers so moms can now listen to the service from there without having to stress too much about a fidgety/fussy babe. Unfortunately, with Sam's fragile immune system, this isn't always going to be an option for us but great to know it's available when he's strong and healthy.

And, still on the subject of being positive, Chris and I and the kids did something really quite entertaining on Sunday afternoon. There was a book/dvd which, a few years ago, became quite the fad called The Secret which I am sure most of you have either heard about or watched/read yourself. Now I don't remember too much about it other than it being a pretty controversial topic about which I still remain sceptical about, but I do remember someone telling a story about how he wrote out a cheque for R1 million (or whatever the amount was) as part of his positive thinking/law of attraction concept. So, in keeping within the spirit of this concept....we went househunting on Sunday afternoon in lieu of the extremely large sum of money we intend attracting into our lives by means of positive thinking! As yet, the large sum of money has not yet appeared....maybe we're supposed to specifically pinpoint a time/date when our particular "wish" is meant to materialise? No, we have not finally lost our minds but we really did do the show house thing just for the fun of "Imagine if........!" I am not sure Meg got the whole "just for fun" concept though as she was already arguing about which room was going to be hers.

Monday morning dawned quite misty and overcast but, as we'd promised the girls we'd take them to the beach, we again packed towels, beach toys and, this time, warm tops and headed off for Blouberg. The only benefit of the cool weather was that we could leave a little later than the last time as the hot sun would be less of a hindrance. However, the disadvantage was that we were then gone during Sam's normal nap time which might have been the reason he was rather grumpy when we first arrived and took some time to "settle" again.



 Table Mountain was hardly visible this time!

Believe it or not, beneath those mops of hair are two actual little girls :-D 

 Sam was at first not at all keen to put his feet in neither dry or wet sand, but eventually relaxed a little.


 Sam "mouthing" Chris' shoulder...as he does with practically anything and everything nowadays.

 As the morning brightened a little, so did Sam's mood although he definitely didn't enjoy himself as much as the last time.


 Sam was not too adventurous with touching the sand and preferred Chris doing the "playing" on his behalf.


 Chilling with Dad, Christopher Robin and Pooh and the gang!


 Meghan and Chrisna contemplating the cramp-inducing water....


 ...but still going ahead and wading in anyway, while Chris had to brave the same cramp-inducing water to get the shot.


 Would you believe they even asked if they could SIT in the water after "accidentally" getting wet!
Of course we said no, although the thirty-odd other folk actually out on surf boards, etc didn't help our argument. Crazy people!!!!


Sam in mid-conversation. I absolutely HAVE to post a video of him "talking"...it requires such an immense amout of effort and concentration on his part, you really have to see it to believe it. And that little RTS mark on his forehead acts like the "ON AIR" sign you usually see at radio stations because it glows bright red whenever he's speaking.


Sam in one of the, now, few positions he finds threatening.

It's been a challenging couple of weeks because of Sam's health but, for me, watching how Sam's development is being completely devastated by his sensory problems has been by far the most saddening and trying. It took us soooooo incredibly long to get him to sit...eighteen months, tethered spinal cord and all, and now we can't sit him down like we used to on the floor to play because it frightens him too much even if we surround him with pillows, etc. When I used to wait at the school for Meg I used to take him out of his carseat and sit him in the front with me so that he could play or sit and read a book with me while we waited but it's just become an impossible task as the moment I bend down to sit in the car he becomes frantic, grabbing at whichever part of me he can hold onto (my car's interior is predominantly black and dark colours are an absolute no-no with him at the moment) and I can't move either hand to page through a book or grab a toy for him. Sam's PT even suggested to me yesterday that we stop PT until Sam's sensory disorder has been addressed as she can do very little with him at the moment. 

And here comes the good news....after weeks of trying to find the "right" OT, we have an appointment next Wednesday with a lady who comes very highly recommended. I am so excited at the mere thought of there being a light at the end of Sam's sensory tunnel....not too bright a light mind you as that would just cause more trouble but bright enough for us to overcome the darkness of the tunnel :) Trying to "fix" something without the advantage of a surgery or medication is just a whole different kind of challenge, but something we best get used to, I guess. 

Sam has unfortunately not recovered all of the weight he lost while he was sick and is currently sitting on 9.5kg's but has been eating quite well again and is back to his "normal" amount of milk now. His hair is looking completely unruly again but the sound of our hair clipper completely freaks him out so we are contemplating taking him for his first ever hairdresser cut. Mmmm...not sure about this one, unless I can ask them to close the whole place down while we're busy with Sam's hair in case of hysteria-induced vomitting :) Much to Brampies horror, I tied his hair in a ponytail the other evening (Sam's hair, not Brampies...that really WOULD be a challenge..hee hee) but although it did look kinda cute it's definitely not a workable solution so it looks like we'll be making a hair appointment soon. Hope the guy can work under pressure because of course I'll be taking photo's.  

I can't remember if I've ever mentioned Sam's incessant knocking/tapping obsession - which wouldn't be a problem except that he does not do the knocking himself but kindly instructs us to do it. People must seriously think we are all a bunch of looney's because whenever he gets fussy, be it in a shop, at a restaurant, doctor's waiting room - you name it, all we have to do to calm him down is to either tap/knock on whatever surface is availabe be it a cashier's counter, shop window, mannequin (yes, really - ala Chris). And, being the oh so persuasive little Smurf that he is, Sam now even has Meghan trained well enough to know when she is required to knock for him. So, it would be fair to say that by the end of each day, there are a serious number of sore knuckles in this house desperately wishing Sam would learn to carry out his OCD practices himself...

...and what do you know! Finally, SOME progress...okay, granted, not the kind of progress one would normally celebrate but progress nevertheless. Don't for a minute think that he finds this a good enough reason to let any of us off the hook though, Meg still had to knock on the roof of the car all the way to school this morning, much to the befuddlement of our surrounding fellow-travellers.

And, last but not least, a great big shout out to Sam's cousin, Amy, on her 20th birthday today!!!

Happy Birthday Aimes!
We hope you had an AWESOME day and enjoyed going out for dinner!
We wish you a wonderful year ahead...all our love xxxxx

Wednesday, March 16, 2011

On The Mend

By yesterday morning Sam's rash was, thankfully, almost unnoticeable and completely clear by this morning. This is such a relief as on Sunday afternoon it was still quite an angry rash :



and was definitely causing Sam some discomfort. The one and only downside of the now non-existent rash is that we are now back to the old anti-histamine formula of Zyrtec in the morning (for allergies) and Cipla Actin in the evening (appetite stimulant), neither of which make Sam at all drowsy as opposed to the Aterax he was having to help with the itchiness...and which ensured a solid uninterrupted night's sleep each night. 

Aside from the rash, Sam was feeling a bit better by Sunday afternoon so we decided to go ahead with a quick bite out to eat for Meg's birthday, together with Aunty Cammy and Uncle Damien. The kids, as always, spent most of the time in the playroom and Sam was determined not to be left out.


 Sam "trying out" the trampoline. He laughed hysterically when Meghan and Chrisna were jumping.




 Sam trying out the cap Meghan got as a present from Chrisna!

As you would have noticed by now, Sam's hair is very seldom what one would refer to as "neat". The maximum period we can manage somewhat neat hair is for about the first thirty seconds after his bath so I had to take a few quick pics of our handsome boy to prove that his hair is not always on a mission of its own :

 Sam L.O.V.E.S Kitty, but Kitty is just way too wary of Sam as she's had her tail, ears and fur pulled just one too many times (not to mention the occasional foot up the bum when Sam's tried to walk right over her and just not aimed too great). Still, the desperate desire for affection gets the better of her and she'll eventually and cautiously creep sheepishly up to Sam, only to be rewarded with the inevitable feet-yanked-off-ground-by-tail move.




Other than the above, Sam is slowly recovering from last week's illness with the exception of his eating though which is now back to where we were over a year ago with him managing a maximum of about ten baby-size spoonfuls of food at the moment. There is still a decent amount of gagging going on but nowhere near where we were this time last week. Fortunately his drinking seems to be almost back to "normal" as too is his tummy. We are still having the occasional throwing up when he gets upset about something - which means that too is back to normal :)

Luke is starting exams next week and we are hoping that, taking his test and task results so far into consideration, all will go well. Unfortunately there has been no developments with regards to last Friday's incident when he was robbed of his cellphone however we were fortunate to be privy to some rather amusing behaviour on Sunday afternoon when, just after 1pm I received a call on my cellphone from "Luke"! The gentleman who had stolen the phone had not even bothered to change the sim card and the person intelligent enough to buy the phone had not questioned at all why there was a list of numbers already in the phonebook and even decided to phone and have a chat with the one saved as "Mommy"!. Except when mommy answered, she just put down but then proceeded to phone again...and once again! I am not entirely sure what she actually wanted but found it quite amusing so sent her an sms/text saying "You are operating a stolen cellphone! Return the phone immediately to Warrant Office L*** at G***** Police Station to avoid further action." I hadn't yet at that point contacted the service provider in case, by some slim non-SA practice, the cellphone was actually retrieved but after said caller's antics imagined her phoning me at like 2am only to have me reminding her for the umpteenth time that she was using a stolen cellphone, so went ahead and had the sim and phone blacklisted. So that was our bit of fun for the weekend! Terribly thrilling..LOL.

Saturday, March 12, 2011

Desperate for Relief!

This last week started out a bit shaky as, as mentioned in a previous post (I think), Sam has been having very restless nights, waking up several times each night. I put it down to teething as he is, along with his four molars, now cutting an additional two teeth - his incissors. So there were moments of misery and irritability but nothing yet unbearable and we still enjoyed a visit with Aunty Cammy and Uncle Damien on Sunday afternoon, where Sam tried out some new fashion shades :


And then on Sunday evening Chris' excitement got the better of him as he had been ITCHING to give Meg her birthday present which we'd bought and hidden a week before that. So, a week in advance, Meg was presented with her new pressie and, also caught up in the excitement, she could not wait until the next day to try it out so braving the cool evening air and darkness in her summery pj's, she went for a test drive :



It has always been difficult to know when Sam is brewing a fever as his "normal" body core temp hovers around 37.4ÂșC (98.6ÂșF) but on Tuesday afternoon his temp had started hitting the 38's and by Tuesday evening was resting on a worrying 39.7ÂșC (103.4ÂșF). After a trip to the doc we found out that he has tonsilities and an upper respiratory tract infection, so our GP prescribed some antibiotics (Augmentyn ES-600). I gave Sam his first dose on  Tuesday evening and, with the help of some pain meds for his sore throat, he slept slightly restlessly but nothing more than usual. However by Wednesday morning things took a turn for the worst - Sam's temp stayed in the high 39's, even with the medication, and he also started vomitting up EVERYTHING I gave him whether it was milk or food or medicine, without fail everything passed his lips twice...once going in, once coming out, and then also developed a bad case of diarrohea. I have always thought that Sam's throwing up had reached the "ultimate" level of potential - I was wrong. By Wednesday evening he'd had practically nothing to eat or drink the whole day and just lay on my lap moaning or whimpering. I used a suppository in an attempt to get his temp down but the excessive diarrohea must have made his little behind fairly raw and he screamed in absolute pain for about twenty minutes afterwards, so even suppositories became a useless course of action. We noticed a faint red rash on his neck but as Sam has an extremely reactive skin were not sure if it was as a result of the fever or a mosquito bite or anything really. Eventually after several bouts of vomitting Sam "settled" down for the night. Thursday morning the rash was still there, but not quite as angry. I continued trying to get the antibiotics, prebiotics and pain meds in...and Sam continued with the throwing up and diarrohea. I changed the dosage method of the antibiotic as I know Augmentyn is known for wreaking havoc on little kiddies' systems, so split the daily dose into three portions instead of the originally prescribed two. Thankfully, after a near-visit to the ER on Thursday evening at 12:30am when Sam woke up screaming in pain which was then followed by more throwing up and more runs, Chris rushed off to our 24hr pharmacy who gave him some Cera-Lyte (a rice based replacement drink) which he drank without much fuss - I am certain that without the Cera-Lyte he would have landed up being admitted due to dehydration. I was desperate not to have Sam end up in hospital as it is Meg's birthday on Sunday and in lieu of celebration, she'd invited two of her "BFF's" (as she calls them) home from school on Friday afternoon, where the three of them were going to have a mini-party. Luckily Chris managed to get a day's leave to help me with Sam which also meant that Meg did not have to cancel her playdate.


Sam trying to charm his way into bunking with Meghan. Anything to avoid his own bedtime.


Friday morning started out with more bad news as, after just dropping Meghan off from school, I received a phone call from the neighbourhood police station of the college Luke attends, telling me that Luke had been robbed, allegedly at gunpoint, on his way to school. We rushed off to Luke's college, me dressed in whatever dregs of clothes I had left in my cupboard, which had not yet been vomit or poo soiled (Gross, I know, but our reality - I simply cannot keep up with the washing of the three/four outfits Sam and I each go through every single day, not to mention the number of towels we use each time in our feeble attempt to save what's left of our carpets). Having Chris with was an absolute blessing as I could "hide out" in the car while he went in to fetch Luke, who was badly shaken and very emotional, but luckily unharmed otherwise. Aside from the obvious trauma of the actual incident, along with it comes a problem I thought we had solved - a way of getting Luke to college in the morning. He is understandably too scared now to go by train. Anyway, I prepared myself for another day like the previous three which also included one vomit incident in the car while waiting for Meg on Tuesday and (horror of horrors) one diarrohea incident while waiting at the school on Thursday, both of which left me covered from neck to knee's in the respective offending fluid. To my surprise, Friday went by pretty uneventfully and by 6:30pm we'd been vomit/poo free! Sam was in his element with all the girls, he certainly does love female attention.


Kaylee, Meg & Jenna

Kaylee, Sam & Meg

Just when I started thinking "Phew! Finally things seem to be getting better." I was again proven wrong. I gave Sam his meds followed by a bottle, but the second he saw the bottle he started gagging - long before the bottle was anywhere near his mouth. And of course he threw up all the meds. Waited a bit, tried again...up came everything. And so it carried on until Sam was vomiting up bile as his stomach was so empty and he eventually cried himself to sleep. He just does not want to eat or drink anything and somehow intantly brings on gagging when he knows I am going to try and put something in his mouth. Even just putting him in his feeding chair causes taboo...


This morning Sam's rash was much worse so off we went to the doc again (after having to cancel a much needed hair appointment for myself). She has little doubt that Samuel is allergic to penicillen and the penicillen "family". He has previously had a reaction to Orelox as well (which is a cephalosporin) and a cross-reaction between that and the amoxicillen in Augmentyn usually indicates an allergy. So now, on top of everything else, behold "Spotty Smurf"...




The one good thing about the Augmentyn being such a potent antibiotic is that Sam's tonsillitis and URT has cleared up, so Dr dB advised us to stop the antibiotic straight away, to treat Sam with some Aterax for the rash and to continue doing what we can with regards to his feeding/drinking as she is satisfied that he is not dehydrated. Again, today seemed to go much better...but alas, come 6pm we had the same performance as last night...three bouts of throwing up and Sam eventually crying himself to sleep. It's like life keeps taunting us with the longed for promise of relief and improvement...and then, just as we start relaxing and breathing that huge sigh of relief.....WHAMMY! We're thrown back down.

I read an email on the RTS listserv a few days ago from one of our RTS mom's and in it she wrote "some days I just hate the word RTS" - couldn't have said it better myself!!

Sunday, March 6, 2011

New RTS Websites

Mattie's mommy, Jacqui, has taken the time and effort to create a beautiful website for RTS in South Africa. Check it out at http://www.rts-southafrica.weebly.com/

Also, there's a new site for RTS Australia http://www.rubinstein-taybi.org.au/

Some brief Smurfy News...we are officially on Night 3 of ten/twenty minute interrupted sleep with Sam and the word (and concept) "sleep" is fast becoming a fading memory in my slowly deteriorating mind. Will tonight be the turning point? We can only hope....

Saturday, March 5, 2011

Make sure your recreations re-CREATE / Sam's first visit to the Beach!

My friend, SH, was recently chatting about the danger of allowing not only your physical being but also your spiritual, emotional and mental being to become weakened by whatever daily challenges we face...my "friend" being Selwyn Hughes and his "chatting" being one of his daily devotional Bible readings. As we all know, the more our defences/spirits weaken the more of an easy target we become to Satan. So he felt it was important to make sure that your recreations really do re-CREATE your spirit, your drive, your positivity, your faith, etc. Recreations which do little more than instil competitiveness, frustration, disappointment are really, at the very least, pointless if not just more detrimental.

So, as we've been riding a high wave of throwing up and sleepless nights again, we decided to do something plain and simply FUN and RELAXING this morning and just after Sam woke up and had his first bottle, we bundled him and Meg into the car (it was way too early for Luke to roll outa bed) along with some muffins, a spare bottle and some boiling water (thanks Cindy) and, of course, Sam's nappy bag and headed off to Blouberg Beach. We arrived just before 9am in order to avoid the inevitable crowds and heat and figured we'd just give it a half hour go to see how Sam did with this strange new surrounding. Just stepping out of the car was rejuvenating enough, especially when your social life revolves around therapy or doctors rooms and the school carpark. Well, our little smurf enjoyed it so much that we landed up staying just over an hour and the only reason why we eventually left was because a) I actually hadn't thought to pack in any toys for Sam (hey - not used to doing the "outing" thing with Sam...need some practice) and b) Chris had a haircut later in the morning.

It was so incredibly refreshing just having those short sixty minutes and an awesome change of scenery. So, we have already planned another trip to the beach in two weeks time...and this time I'll be way more prepared.


 Sam, quite willingly, eating a chocolate muffin for breakfast.

 Oral aversion? What oral aversion?

 We know that a lot of the RTS kiddies have problems with textures like sand and grass, etc but Sam had absolutely no problem having his feet in the sand and later even allowed me to pour some of it over his feet and legs.

 The water was F.R.E.E.Z.I.N.G and I barely managed a one second tipping in of my big toe before getting cramps but Meg and Chris were much braver...

 Although Meg was not brave enough to give up without a fight when Chris tried to throw her in!
Luckily he was just playing.

 But she chose to rather keep her distance just in case :)

 Table Mountain

 The  Seli1 which has been stranded just outside of Blouberg since 2009

 And then...my camera's batteries died so for the most important pics of Sam actually braving the cold water/sand I had to make use of my phone's camera.


And of course, no place/event goes without some hand clapping!