Same Old Same Old

The past week or so has been a bit all over the place in Smurfville...sometimes diving into anxious waters and then suddenly soaring high...then diving again.  Basically the same old same old.

At Sam's orthopaedic appointment two Thursdays ago, Sam's OS tentatively scheduled Sam's foot surgery for the 26th July to be confirmed once he'd seen the x-rays we were to have after the consultation, as well as further confirmation from the other surgeon involved.  Not the best  news for our little smurf, who I'd so hoped would be able to go at least six months or so before another surgery.  Still, the consultation ended on a high when Dr dT advised us that there would be no charge for the consult as, technically, he no longer saw private patients but that there are one or two children who he can just not get out of his heart...Sam being one of them.  Aside from the obvious financial relief, Dr dT's statement brought tears to my eyes...having a doctor or any other medical practitioner share with you that they too are emotionally invested in your child (especially when there's no financial benefit to themselves) is something quite wonderful. 

This particular high unfortunately received a slight blow shortfly afterwards when the doctor we'd hoped to bring in for Sam's anaesthetic, advised that he would be overseas over that period.  Then, last week Thursday, Dr dT sent me an email saying that Sam's x-rays had shown an improvement on the angulation of that big toe and that, although he was still in the process of obtaining additional input from his colleagues, there was a good chance the foot could be treated non-surgically.  The worst case scenario, being that Sam still needs surgery, we would reschedule to accommodate our anaesthetist as the other surgeon involved could in any case not make 26 July. I replied to Dr dT's email with a very mature "Woo Hooooooo", literally bounced into Grampa's room (rudely interrupting his time with Angus Buchan) to announce the good news, then did an almost hysterical dancing-handclapping jiggy round the lounge with Sam (almost on the verge of tears by now with all the commotion), put Sam down and went in search of some anti-inflammatories for the muscles I'd most certainly pulled!

Our high got a bit shakey again by Saturday when Sam started wheezing and going all croupy on us.  On Wednesday night he started throwing up as well and I dismally saw our little trip to Pearly Beach slowly slipping away. 

But alas, here we are....three sleeps from Pearly Beach with a congested, slightly whingey little smurf but (thank goodness) nothing more serious than that as yet and literally just HOURS away from the Inaugural World RTS Day tomorrow (don't forget to wear your purple and yellow).  Disappointingly, even though I managed to send out a few more articles to various local publications, none of them seem to have been published. I might have had a bit more success if I'd had the time to push them a little harder but unfortunately Sam's been a bit too clingy for me to achieve much of anything over the past few days.  So at least I have the World RTS FB Event to look forward to - although I don't have the foggiest clue how to actually "attend".

Have I mentioned Sam's chair fetish before? If not - Sam is absolutely obsessed with chairs...plastic chairs, wooden chairs, his feeding chair, upholstered chairs, small chairs, huge chairs, tiny dollhouse chairs...and especially blue and brown chairs. Ballet recitals, school concerts and even doctor's waiting rooms are an absolute delight for chair-gazing for Sam.  A few weeks ago Sam added slides to his fetish and now excitedly points out any slides he manages to catch a glimpse of...even if its for a split second in the background of some random tv show or book and even when its not actually even a slide, like the little ramps on the toy car garages, the ramp in his PT's room, etc.  For the first time in his, almost, 3 years in this house Sam's noticed that we have a great big slide in our very own backyard so whenever its warm enough he loves going outside to "slide" (which entails someone holding him and shimmying him down the slide with very controlled movement and then quickly picking him up before he assumes the ever-so-frightening sitting position). 

These pics were taken a couple of weeks ago.....

Now I just have to master the art of drawing slides on the iPad :)

Bye Bye Charity Bond...Bye Bye Now

Okay, so let's start off with the bad news (not that there's any particularly good news to compensate, but maybe I'll think of something before the end of the post) - we have had to give up our hope of organising a charity bond for RTS to ride in the March 2012 Cape Argus Cycle Tour as we needed a minimum of ten riders to participate. Apart from our original aim, which was to raise awareness of RTS, I was hoping to use any monies which may have been  donated to put towards trying to organise our own little RTS South Africa conference some time next year. So, I am a little disappointed but also conscious of the fact that perhaps I should have tried to get the group together a little sooner. Chris and I will still ride, in whatever get-up we agree on by then (we are both leaning towards a Smurf theme) and will then look to perhaps a more successful attempt for the 2013 Argus...now if that isn't enough notice, then I just don't know :)

On Saturday we got to share in the birthday celebrations for both Sam's RTS brother Matt's birthday and Matt's equally adorable baby brother, Nic. It was great catching up with our little RTS family and seeing in person how much all the little kiddies have grown and progressed. I hope we get to do it again soon. Here are a few pics from the party, but there's a couple more on my FB page :

 

Sam and his RTS sister, Peyton, with their beautiful big sisters

Loved this one of the three RTS sweeties...Sam looking at Matt look at Peyton

Peyton with her Dad

and Sam with his Dad

The two girls, Tayla and Meg, just chilling. These two have become such good friends in such a short period of time which I think is a real blessing waiting to happen for a time when either or both of them might need someone (other than a parent) to talk to, who can truly relate to their circumstances.

(and please do note those gorgeously huge and lovely strawberries which were offered in super generous portions at the party...I can still taste them now...Delish!)

Yesterday was a bit of a frustrating day...firstly went off to church with Sam, who was particularly fussy and disruptive, so I had to leave the main church even before the worshipping was finished. Off to the baby room which has now been equiped with a tv, so not a bad alternative except that both the little boy and other mom already there were both coughing and sniffing something silly...so tried to hang around outside with the sunday school kids who were painting various items to place in the church garden, like rocks and little boards (BTW awesome idea, whoever's it was) but Sam threw a tantrum when I wouldn't let him open and close the entrance door. So back inside to the foyer of the church and kitchen area which, of course, has loads more doors worthy of tantrum-throwing requests. Then, to top it off, Sam decided to make a poo which is always such an awesome experience because, due to his aggressive sensory defensiveness at the moment, I cannot get him into the "lying down" position without him squealing hysrerically. So, Plan B? Have you ever tried to change the dirty nappy of a not-yet-walking two year old, with them in a standing position? No? You gotta try it...it's very entertaining.

Later yesterday afternoon went off to my cellphone service provider to renew my two-year contract, just like I did two years before now. But they would not allow me to renew because I cannot provide them with employment details!! Mmmmm....now why would I not be able to provide them with employment details...let me think....Oh Yes, it's because I am unempoyed...just like I have been for the last three years...which means, and I'll go slowly here for you, unnamed service provider (but whose name starts with a "c" and ends in a "c")so that you don't get lost...that I was unemployed the last time I renewed my contract as well. Which contract, I have to point out, has not once over the last eight or ten years ever been paid a single day late! Just had to get that out there.....Uuurrrggghhhh!

In closing, a short video of what a little smurf has to do when he has outgrown the weight limit on his mechanical swing...why, he swings himself of course :)

Oh, P.S., thought of some good news...this morning I washed my face with TRESemme Shampoo with a lower sulfate cleansing alternative and with added Aloe Vera and Avocado...which means my face will be protected against damage and breakage the whole day! How awesome is that?

*Oh Happy Days.....*

The "trio" together again.....

On Sunday afternoon we had the wonderful opportunity for our little RTS Trio (Sam, Matt and Payton) to spend some time together again, along with respective siblings Meghan, Nic and Tayla. Unfortunately I thought I had lost my camera after remembering to have last had it on Friday at Meghan's school, so I have absolutely no pics of the trio posing ever so charmingly on Tammy's couch while Jacqui entertained them by singing Matt and Sam's favourite Wheels on the Bus. As Murph would have it, I found the camera on Monday afternoon lying under the seat of my car.

As always, it was wonderful spending time with our RTS family, swapping stories and tips while Meghan and Tayla spent an amazing two hours straight in the pool. Thankfully there were no hair-pulling incidents this time :) Although there was a near-miss where Sam almost (again) grabbed a handful of Matt's hair, with me managing to catch him literally a split second before. The afternoon ended with Sam receiving the most exquisite pressie from Jacqui, Lloyd, Nic and Matt....a latches board. There could be no more perfect gift for our obsessive compulsive door opening little Smurf.

Other than Sunday's visit and a few sporadic visits to the shops, we have been pretty quiet this side. Sam is still not using his leg properly - on Sunday afternoon we tried to allow a few "normal" activities like walking, etc but by Monday it was back to the NEW normal use, which is treading lightly on his toes at first and then just holding the leg up completely. We have NT at 11:30 this morning so will bring Heidi up to date and ask for further advice. I have this niggly sense of worry at the back of my mind that perhaps it's related to his tethered cord and that the right leg is going the same way as the left, but Sam's doc doesn't think its a possibility so trying hard not to dwell on that thought.

As far as Sam's surgery goes, we are all set for 7:30 on Monday morning...we had a bit of a wobbly on Monday afternoon where for a short while it seemed as if we weren't going to be able to get Prof F, Dr B (the anaesthetist and, for sure, Sam's secret guardian angel) and an available theatre all co-ordinated. But Dr B reminded us once again why we think he is so awesome and, with Prof F's help and willingness to juggle his day and with Prof F's assistant, Cheryl, doing all she could and more, everything was thankfully pulled back together and at an even more convenient time than originally planned.

We are on Day 3 of the school holidays....just 35 more to go! This year Meghan had the most wonderfully caring and compassionate teacher, Mrs Rone Saaiman, who not only did an outstanding job in her capacity as teacher but really did make such a huge impact not only Meghan's personality and attitude towards school but on our entire family by being so understanding and willing to help where she could by accommodating me with parent-teacher meetings, keeping me informed of Meghan's emotional state during the more trying times with Sam, etc. As if that's not enough, she encouraged Meghan to educate and share with the class what it is like having a special needs brother and asked regularly about Sam's wellbeing. So, the scene we made our way through on Friday while trying to get to Meghan's classroom to say goodbye was a little unexpected but by all means quite understandable.....first one classmate walked, sobbing and visibly distressed, towards us, I asked what was wrong and she explained through tears that she was going to miss Mrs Saaiman. Gave her a hug and walked on. Another classmate approached also in tears, this time a boy. Pushed ahead amidst the other children, all laughing and dancing around at the thought of the upcoming holidays and festive season....none of them being Meghan's classmates. When we got to the classroom, the number of children - boys and girls alike - sobbing their little hearts out at the thought of not having their daily dose of their precious teacher in their lives was quite overwhelming and even had me fighting the tears away and I thought...WOW....how wonderful for this person to have touched these childrens' lives in such an unforgettable way. We will be thinking of Rone on her birthday on the 19th December while we are celebrating our slightly early Christmas Dinner!

 

Welcome Payton

Sam and I got together this morning with our good friends, Jacqui and Matt, and also met for the first time new RTS mommy, Tammy, whose little baby, Payton, was born almost two weeks ago. Meeting Tammy brought back many memories and emotions about those first few days after hearing Sam's diagnosis and I cannot believe that this coming Sunday is already six months since Samuel was born.

Jacqui and Matt (and a glimpse of Sam in the top-right corner)

Yeah Yeah! Pose for the camera - just give me a sec..if I turn my hand just a little to the left...it might just fit!

Such a charmer!

The first thing I remember is absolute fear - fear of an unknown syndrome, an unknown path, an unknown future...but most of all...fear of being alone in this RTS-world. Getting to know Jacqui, Lloyd and little Matt, as well as my daily text-buddy, Vickie, has been so crucial to being able to find our way. Everyone wants to....needs to belong somewhere...and having such an instantly close bond to families we basically have not known for very long, has made the transgression from the typically "normal" world we once knew to the still largely undiscovered RTS-world we've become part of, so much easier and even a little exciting. And so we warmly welcome Tammy, Tayla and Payton to our world.

It's also always such a treat to get to see Matt - who is such a precious little boy - and to hear about all the wonderful things Jacqui and Lloyd get up to with their little angel...it makes me want the next six months (or twelve...or eighteen..okay - I'll settle for six) to simply fly by...and yet I am almost scared of missing something new that Sam does or conquers or, in actual fact, any of my children. Just this last week Sam's big brother, Luke, started shaving for the first time (I threatened to post the pic on the blog, but don't want to embarass the poor kid) and I can still remember the day he was born like it was yesterday. I still remember Meghan's first day at "big school", almost two years ago...remember her crying her big blue eyes out, remember the teacher having to pry her finger-by-finger from my leg and holding her in a tight grip while I make a dash for the gate...I remember it like it was yesterday. Oh hang on - it WAS yesterday....okay, well last term at the very least..no...SERIOUSLY! Meg has had some separation issues and right up until last term we would still sometimes have tears in the morning when dropping her off at school. But the passed few weeks, she politely tells us we can go when we start walking her to her class. Let's hope that the first day of Grade 3 doesn't find us regressing.

Anyway, Sam is doing okay and has actually had quite a long nap this afternoon...YAHOOOO...hence me being able to update the blog (what washing, cleaning, cooking???) It's all about prioritising, after all! He is still very intrigued by his little hands, which regularly find their way into his mouth now - yip, even that little thumb. He also holds his rattle for a little longer, so every day there seems to be some type of progress, even though its really teeny, weeny, smidges of baby steps. He is such a character though and is extremely "verbal" and loves his new found vocabulary consisting of (time for creative spelling) goof, bffff, ggggooo(you have to "roll" the g), coo, coof and sometimes a combo, like goof-bffff (don't laugh - him and I often have like ten minute conversations in our newly-learnt Samglish). The other night, after his usual 1am feed, while I was trying to get him back to sleep he lay looking at his (unbeknown to him) sleeping dad who, at regular intervals, let out a rather loud snore. Obviously Sam thought this was an additional Samglish word, so after each snore he would promptly respond with goof, or coo, etc - you get the picture. Although it was quite funny in the beginning, after five minutes it became really old and so I had to ask Chris to please turn over so that I could get Sam to sleep. And something else that I have found absolutely FASCINATING is that Sam "talks" (Samglish of course) in his sleep. I have never heard or seen anything like it, I mean, Luke and especially Meghan talk in their sleep, but they at least waited until they had mastered their language a little more...what a precious little elf he is.

Mmmm..what shall I do today? Oh, I know - lets have a look at my hands - it just NEVER gets old!