Blessings in disguise?

We've finalised a date for Sam's surgery and it's a little later in December than we were originally working towards...in fact, it's five days before Christmas...the 20th December. It's obviously not exactly something you look forward to doing over Christmas time, especially where there are other children in the family...but, for us at this specific time, it's the best we can do. Prof F has an incredibly busy schedule (ultimately a good sign - if it was him fitting into our schedule as opposed to the other way around, I would be a little worried) and from the week of 6 Dec is busy with brain tumour surgeries, etc so can either do Sam on the 3rd December, 20 December or anytime from the middle of January. Dec 3 would mean that we miss out on the Christmas Concert Meghan and Chrisna have been practising so hard for, as well as having to worry about getting Meghan to and from school, homework, etc. Mid-January is right at the beginning of the school year (17 January) which, apart from the task of settling Meghan into her new class, also means various parent/teacher meetings and other goings-on at the school. Chris has a couple of weeks of budget meetings in February which will make it tricky for him to take leave, ultimatey not the best scenario as I would prefer for him to be able to take leave to relieve me from the hospital and then Prof F is overseas in March again. So, remove the emotional and sentimental aspect for a while, 20 December is, logistically, the best option for our family.

I don't know about you, but over the past few years I have heard many many people complaining about how the true meaning of Christmas is becoming more and more distorted by commercialisation but still find it almost impossible not to get swept up in the festive whirlwind of presents that need to get bought and wrapped, trees which need to be assembled and decorated, roasts and trifles which need to be made...and, yes, eaten...and although we do make sure that the heart of the matter, being the birth of our Saviour, does not become totally insignificant to these festive activities, sometimes it is a real challenge to keep this our main focus as we become totally smitten in watching our children enjoy the whole Christmas package. Should there be the same amount of celebrating and cheerfulness if Christmas Eve/Day is not celebrated with a scrumptious dinner/lunch with our family, if there are few or possibly no exchanging of gifts followed by family photo's and children playing games outside? Of course there should be! WOULD there be? Honestly? I really don't know...I want to say that if Christmas lunch is a toasted sarmie from the hospital cafeteria or if gifts are exchanged around a hospital bed, that as long as we don't lose sight of that "true meaning" we should have just as wonderful a Christmas as we were originally planning but sometimes, no matter how hard we try, we just cannot get our heart and our mind on the same page. So what do we do? We try harder of course :) I think the part that worried me the most about Sam's surgery being on the 20th was telling Meghan because, without a doubt, she is the sibling that has sacrificed the most since Sam was born and although I can tell when she's feeling particularly neglected or even a little jealous of the attention Sam needs...she still loves him completely and unconditionally and worries incessantly about him. She often asks me what will happen to Sam if Chris and I die, what he's future is going to be like when he's "old" (to which I usually say that unfortunately we don't know how Sam will be in thirty years or so and she once replied "Oh No, I don't mean THAT old!!!" Hallo! Let's talk again in twenty-seven years about what's "old"). Which reminds me (I might have posted about this already - but just in case) a few days ago while trying to make head-or-tail of what was happening in Meghan's schoolbag-cum-dustbin-cum-lost book cemetary-cum-art collection-cum-cooldrink bottle bermuda triangle I found a Get Well card she made for Sam but obviously forgot to give to him (or probably just couldn't find it) where she wrote that she is sorry that he is "RTS" but that she loves him even though he is "RTS"!

Anyway, surprisingly, I have managed to sway off the topic which was that, although I was a little worried about telling Meg Sam's new surgery date, even though for the first few seconds she looked a little heart-broken, she quite quickly recovered and then you could see that little metaphorical light bulb flash and she asked "So when will we open our presents?" And I expected a different reaction because...?? Perhaps though this whole turn of events is a blessing in disguise...perhaps this year, both parent and child alike, will truly discover and experience this "true meaning of Christmas" which term, so effortlessly, gets exchanged in one conversation after another.

This morning, when we dropped the girls off at the church for concert practice, as always we were asked how Sam's doing and whether we have a finalised date for surgery now and I explained that it's all happening a little later than expected and explained why and one of the Sunday School teachers, Helga, said to me "You don't know yet why it has changed?" So, not sure if she'd previously heard me,I began explaining again about the surgeries Prof F is doing next week, but before I'd said two words she looked at me again and said "You don't know yet why it has changed."

It wasn't a question......

"Live for today, but hold your hands open to tomorrow. Anticipate the future and its changes with joy. There is a seed of God's love in every event, every unpleasant situation in which you may find yourself." :- Barbara Johnson

"When the heart weeps for what is lost, the spirit laughs for what it has found."
- Sufi Aphorism

I'll huff....and I'll puff.....

and I'll blow your house down...and all the trees and fences and billboards and thirty-story buildings and maybe even a mountain or two, said the GIANT wolf to the little town. YIKES! So, in case you're wondering what nonsense I am talking now....we're experiencing a slight little breeze here in Cape Town (and they call Port Elizabeth the "Windy City"???!!!) So it made our appointment at Red Cross Childrens Hospital ( Take a peak) this morning just that much more entertaining. Firstly, I was last there about nine years ago (when we had a cancer scare with Meghan - a story for another day) and Chris has never been there so we were slightly clueless as to where was the best place to park in order to avoid been blown off our feet on the way into the hospital...not that there was loads of parking, well that we knew of anyway. So found a parking space, headed towards the building basically following everyone else into this one entrance and, just to make sure we were going the right way, still stopped and asked one staff member where the "Main Entrance" is. He confirmed we were following correctly so we headed through those doors. Once inside the security guard informed us we must go round to the "Main Entrance" (Huh?). Out into the slight breeze again and in at "Main Entrance". Go to Reception who advises us we actually need to go through the OTHER "Main Entrance"! Seriously? Hee Hee! It was actually quite funny, gave Chris and I something to laugh about to take the edge off our nerves. On the way out we shared the lift with ten Grade Two's (or around that age). Chris, being Chris, tried to scare them a little by saying something along the lines of there are loads of doctors walking around with huge big needles. They all looked at him rather google-eyed, while I slapped him on his arm for trying to make them nervous even though he himself is rather scared of needles. Anyway, their teacher told us that the one little boy is having heart surgery within the next two weeks so they are all pretty used to needles by now.

So, that was our trip to Red Cross this morning. Feels like I am leaving something out....oh yes, Sam's actual appointment. Knew there was an actual point to this post - for a change. So, after another thorough examination and reviewing again the pro's and con's of the surgery, Sam will, in all probability, be going in the week of December 6th, theatre availability permitting. And? And...both Chris and I are confident in Prof F's expertise and judgement and feel 100% certain that this truly is in Sam's best interest. So yes, we will be nervous about the operation and saddened at the thought of Sam experiencing more pain and trauma during the recovery period, but our hearts are at ease that there is no other way and we are not subjecting him to this procedure unnecessarily.

Pearly Beach Pics

First things first...we are seeing Prof F tomorrow morning at 9:30am at Red Cross Childrens' Hospital to finalise what's happening with Sam's surgery - Yay! (Definitely not "Yay" for the surgery, which if I could think of anyway to avoid - I most certainly would...but "Yay" for having some more clarity on the hundreds of questions I have bursting from my mind looking for answers - until tomorrow morning when I will, undoubtedly, forget 99 of them).

We had such a wonderful day on Saturday - I am super-pleased we decided to make the trip to Pearly Beach. It only took just over two hours to get there (only?) and although Sam only slept for twenty minutes he was amazing the whole way and didn't moan or cry once (thanks to a whole lotta book-reading, singing, etc). Hey, whatever it takes! He also only slept another twenty minutes on the way back and from the bottom of the pass until we got home (approximately thirty-five minutes) he jumped..and jumped....AND J.U.M.P.E.D!

On the way, just after 7:00 am

We had some breakfast as soon as we arrived and in between that and the wonderful lunch Sammy's Granny and Aunty Alvie prepared for us, there was loads of catching up to do. Uncle Charlie and Granny entertained Sam with some karaoke while I got a chance to eat.

A pic of me and Sam with Granny and Brampa - the very first one, if I am not mistaken, as my folks have been divorced for some time and, living quite a distance apart, we don't get many opportunities to all be together.

Brampa, Uncle Charlie, Aunty Alvie and Granny and Sam,of course.

Sam was in his element...a whole new set of cupboard doors, room doors and security gates to be opened and closed. We've decided that Sam could possibly have a future in any of the following careers...a doorman, a SABS engineer (testing door hinges, handles, windows, etc), a dentist or orthodontist...the sky's the limit where our little Smurf is concerned.

What the weather looked like coming over Sir Lowry's Pass (my favourite - NOT), on the way home. Pretty miserable.

And if there is anything...and I mean ANYTHING lying on the floor...big, small, round, flat, breathing (poor kitty) - you name it...Sam takes it for granted its been put there purely for him to first kick and then try and stand on it.

Meg made a beautiful Happy Birthday card for her granny (the pink one on the left).

Now I am off to go write down all my questions for tomorrow morning.....just have to try and remember to take the darn thing with me when we leave!

P.S. Sam has been asleep for the last two hours and eight minutes...and, yes, I have checked several times to make sure that he is actually still breathing :)

PEARLY BEACH...HERE WE COME!

It is Sammy's Granny's birthday today - HAPPY BIRTHDAY GRANNY/MOM!

As mentioned earlier this week (or somewhere roundabout there - not great at time-keeping lately), my mom, aunt and uncle were meant to come down to Cape Town for a visit, however, their plans were unfortunately changed which was quite disappointing as Sammy last saw his Granny in July and, with his (possibly not - more about this later) upcoming surgery, we are spending the holidays at home this year in order to stay near to a hospital, just in case. We are also not sure how much discomfort Sam will be in. So, we decided at the last minute, that we are going to attempt a day-trip to Pearly Beach tomorrow (which means 2.5 hours there and 2.5 hours back...all in one day!). I am hoping that Sam will be okay with the lengthy travelling as, particularly at the moment, we sometimes wait for approximately an hour outside Meg's school in the afternoon waiting for her to come out and he manages quite well with this, even though the car is stationary. At the moment Meg's school is busy with year-end exams which means that the normally staggered finishing times for the various grades, is now converted to the same closing time for the entire school which means a traffic nightmare trying to find parking anytime from forty-five minutes before the bell goes or having to walk a good couple of km's to your car if you don't get there early enough. Thank goodness this is only a once-a-year procedure.

Back to the surgery - Sam's neurosurgeon is currently overseas, where he's been since mid-October. I have been battling to confirm with his office a time and venue for our appointment with him on Monday and so, at this moment, have no actual idea as to whether we are even going to get to see him as he only returns to SA on Sunday, leaving not much time to finalise an appointment. Can only wait and see how Monday pans out.

As for our Smurf - Sam's actually had two really good days (we won't mention the three days prior to that - PHEW!) He had a really good physio session on Wednesday morning (not sure if this is what changed his mood, although I doubt it) and, although he isn't quite near mastering it yet, is slowly but surely starting to get some idea of this whole much-ado-about-nothing crawling stuff we keep trying to ram into him. I don't know if I posted about it, but Sam started sitting properly a couple of weeks ago...I seriously need to sit down one day and read this blog so I actually know whether I am coming or going - it's not like I have an excuse not to have done it yet with all the free time I have during the day/night to sit down and relax, have a cup of (even just slightly) warm tea and spend a good hour or two in front of the pc. Moving along, so Sam showed some great improvement with his "crawling" on Wednesday, although whereas before it was his legs he was battling to co-ordinate, he now moves them quite well but appears to have very poor strength in his arms and, especially, his shoulders. Heidi has thus given strict instructions to completely limit Sam's "walking" which I thought he was really going to cause havoc about, but its actually been not too bad...we spend more time sitting and playing on the carpet and every now and again I just flip him over onto his hands and knees and we practice a little. Whatever has been bugging him over the past few days also seems to have let up a bit - I don't know if its just coincidental, but the Movicol has kicked in nicely so not sure if his constipation issues were the main problem.

We've also decided that we need to get Sam to an OT sooner rather than later, as his paed suggested several months ago. Although it eased up for short while, Sam's Moro Reflex is conspiring with his reflux with the whole comeback performance thing - so, seeing as its now well over a year since this reflex should have subsided, I think its become quite essential that we have him assessed by an OT who, preferably, deals with not only the sensory integration issues but the reflex integration problems as well. First going to wait and see what happens on Monday before going ahead and making any appointments. Speaking of the reflux though, it hasn't reared its ugly head in almost a week now....well, except for a very brief episode when giving Sam his supper tonight - Yay! I so love not having to avoid showers of vomit cascading all the way down my shoulder and back at least once or twice a day. I don't even cringe anymore, before I would still try and out-maneuver the vomit to try and have most of it land on our (yes) newly replaced carpets but I don't even bother anymore. Hey - at least I can throw my clothes in the wash!

Overall, the week has ended on a high note with our Smurf being pretty calm and easygoing...let's just hope this continues into tomorrow's trip :-) As for the rest of the clan - same old, same old....! We've had some pretty warm days which of course Meghan was ecstatic about as I told her she could only start swimming once the temps started hitting the 30's (she's been asking to swim for like the last month or so already). So, on Wednesday I gave in........

Meghan (in full kit) was at first very enthusiastic about how warm the water felt,

until she put more than just her feet in the water! The water is still freezing, having only had a handful of really summery days so far. Sam splashed around in a whole 5mm of water in his little inflatable pool, but couldn't take a pic as I had to sit next to the pool keeping an eye on him. Next time.

And of course, Summer means not only swimming, but also chocolate ice-cream

(Okay, so does Autumn....and Spring.....well, and Winter too).

"Truly, the greater a Christian is, the more he realises his dependence on the prayers of others.  Paul knew full well the power that was against him and he did not hesitate to ask for the prayers of the church in Ephesus.

Notice also that his request for prayer was clear and specific. When you ask someone to pray for you, be equally specific. Don't just say "Pray for me," but "Pray for me that..." 

Selwyn Hughes

Jumpy Smurf

Sam still loves LOVES L.O.V.E.S. jumping and why not? It's not like he's the one taking all the strain involved in his passion for jumping. Add a bell attached to some elastic string and you've got hours upon hours of smurfin' good entertainment....well, for Sam that is.

Preparing for take-off....

We have lift-off....

And down we go...

...already preparing for the next jump before those tiny feet (little turned-in foot and all) have barely touched ground.

For months we have been contemplating buying one of those Jolly Jumpers for Sam. Personally, I cannot say that I am too fond of them and never even considered buying one for Meg or Luke but, then again, neither Meghan or Luke found jumping as totally delightful as what Sam does and he doesn't really have a whole lot of alternate activities to look forward to every day. Just a month or so ago you could still manage to keep him entertained for a relative period of time just by sitting and reading a book with him or playing with one-or-other noisy toy but Sam's not having any of that anymore...he wants to be on the go all the time. So, eventually we decided we would have a go at buying one but were quite shocked when we found out how expensive they actually are. So, back-tracked then and decided to first give it some more thought as we already have quite a sizeable stash of unused baby goodies which we were confident Sam would find pleasure in, but alas! On Saturday morning we dropped Chrisna and Meghan off at church to practice for their Christmas Concert and when we went back to collect them, Aunty Diane had a stunning surprise for Sam (without knowing that we'd been considering this) - you guessed it, a jolly jumper! Of course we couldn't wait to try it out so immediately hooked it up at the church, as the children were finishing their practice, and Sam took to it immediately amidst an audience of children and Sunday School teachers. Chris and I were like....YAY! We won't need physiotherapy after all for our poor aching arms and backs!!!! BUT when we tried it out at home he kinda smiled for a moment or two and then? Bawled his eyes out! We thought, okay, maybe he's just having one of his "moments" so left it alone for a while and tried again later but got the same reaction. Now I am not sure what could have made the experience at home so distressing but we have only two options 1) We tell Uncle Johan that at least once a day I am going to bring Sam round to the church for some jolly-jumping or 2) At least once a day I am going to be driving round our neighbourhood anxiously searching for some random people to take home in an effort to re-create the audience Sam obviously wants. Or maybe I should just give it a day or two and try again? Okay, lets go with that one!

We decided to take the girls out for an ice-cream at a nearby (acclaimed) No. 1 Garden Centre this afternoon, but were a little disappointed when we got there as it has been some time since we last visited there and found the condition of the little petting zoo and generally the whole play area quite appalling. Nevertheless, the state of the place didn't seem to bother the girls too much (not until each one of them, at different times, ran their barefeet through the ample supply of animal droppings everywhere) so we let them finish their ice-creams and feed the animals, as they desperately wanted to do.

And while the girls played...

Sam slept.

In between jumping, Sam still likes making some time for "walking". It's really quite amusing to see how he automatically lifts his foot when going up a step, without anyone having taught him this. He also uses the same stepping when trying to walk over "Kitty" - poor thing, when he's not trying to simply walk straight over her, he tries to (purposely) stand on her whip-lashing tail.

Well, today certainly started off a bit better than yesterday but by this afternoon Sam was as ratty as anything. I honestly think that a large part of his whinginess is just pure frustration at not being able to be more independant and mobile but, in fairness, there's definitely something else bothering him as well, whether it be his tummy or teeth or the onset of illness. What made our morning quite special though was that at the end of this morning's service, our Minister asked Chris, Sam and I to join him at the front of the church while the congregation prayed for Sam. I don't think I could ever adequately express in words how completely uplifting it is to know that there are so many praying for us and how blessed we are to be part of such a caring and supportive christian family. As always...there has to be a "Sam-spin" on this story - I was holding Sam in my right arm facing me, while Johan stood behind me slightly to my left and as Johan started praying (and yes my eyes should have been closed, but I don't get to do ANYTHING with closed eyes anymore...not even sleep), Sam lifted his right hand in his crooked-type-pointing gesture and seemed to be reaching out to Johan, as if to acknowledge what Johan was saying. And at least we were spared the screaming he subjected us to the last time he was in front of the church, when he was baptised.

Only eight more sleeps till our next appointment with Prof F. I have definitely made peace with the fact that Sam IS going to have the TSC surgery and that it IS definitely in Sam's best interest to do it now before he suffers any further bladder or neurological damage but still have the occasional, momentary lapse of reason like this afternoon when while changing Sam's nappy he promptly showered both himself and my bed (sorry for the graphics) in a pretty impressive fountain of wee and the thought that maybe his bladder's repairing itself somehow quickly flashed through my mind. But by bathtime we were back to his normal dribbling :)

Can you see the resemblance?

Well, its been some time since I last posted a pic of myself so thought "What the heck.....?"

Okay, so there are one or two minor discrepancies like the colour of this woman's hair, the nice frilly nightgown and dressinggown she had time to put on before bed as opposed to the first mismatched pair of pj's she could grab out of an already darkened room shared with baby (although the slipper-less feet are definitely familiar), the absence of the lovely swollen glands, squelchy ear-noises and sore throat that feels like she's been taking her tea with milk and two blades please...the result of leaving a particularly bad case of tonsilitis to, hopefully, clear up on its own (like its known to do?) before eventually resorting to her doctor for a much-loved course of antibiotics..you know, the kind that leaves you feeling about as energetic as a slug who's been taking his tea the same way, but with two puffs of cottonwool as well (always reminds me of that movie with Jim Carey called Me, Myself and Irene" where he gets a bad case of drymouth after taking his medication - I can sooooo relate right now). But add another ten teeth to that baby's mouth and you've got the splitting image of Sam (give or take a shattered window pane or two which usually comes hand-in-hand with Sam's high-pitched screaming). Oh...and of course...that glorious head of hair is missing!

Seriously - we're having a really interesting time as, apart from my tonsilitis, Sam is becoming increasingly more fussy, a time when Mom kinda needs to be on her best form for. I keep thinking that perhaps he's caught some of my germs and is battling with a sore throat or earache or something, so took him off to the doc on Thursday morning just to make sure but she could find no signs of infection or anything nasty at all, other than his rather swollen mouth as the result of cutting, now, three molars. So, I am really hoping that it is merely his teething causing all the drama at the moment, but still remain sceptical because his reflux is also giving us a run for our money at the moment, literally...new carpets plus freshly peaking-reflux = not the greatest of scenarios. Another worrying factor is that, although it is one of the most common RTS conditions, Sam never really did battle with constipation as I know many of his RTS siblings have. However, this seems to be changing as even though I am giving him the maximum amount of Duphalac he can have on a daily basis, his tummy is really giving him some problems - something I know can aggravate reflux as well. So we bought some Movicol this afternoon, of which Sam has had his first dose, and are hoping it solves at least this problem.

As for the rest of the clan, the girls are practising frantically for their Christmas Concert taking place on 5 December, as well as wrapping up all the end-of-the-year activities like assessments, class/extra-mural parties, etc. while I count down the days to our next appointment with Prof Fieggen on 22 November. Luke is being...well...Luke, which doesn't involve a whole lotta anything other than playing playstation, playing pc games...(the usual 17 year-old-boy-stuff). Sammy's Granny (my mom) is coming down next week Thursday (which also happens to be her birthday) from Pearly Beach, for a couple of days so we are really looking forward to that and then Sammy's Ouma and Oupa (Chris' folks) are coming down the following weekend from Stilbaai for a visit as well. Last year we made an effort to spend some time in Pearly Beach and Stilbaai but we are not sure what Sam's recovery is going to be like after the surgery so have decided to just play it low-key this year and stay at home :)

Is it that time already.......

No! Not really! (Well not if you're like me who, being such a shopping enthusiast as it is, generally leaves Christmas shopping for the last minute) But still, for about the past week Meghan has been frantically busy MAKING our Christmas presents (can only imagine that ol' Santa's imparted some vital information to Meg and forgotten to share it with the rest of us). Anyway, I am not exactly sure as to the nature of these presents, just that each gift-making day ends with her wading through a swamp of styrofoam pieces, cellotape, endless paper offcuts, lid-less glue sticks and khoki pens, every scissor in the house she could lay her hands on and a colourful collage of paint stains on her carpet in an attempt to make it safely to her bed. So, at this point, my present is stored safely away in a nice, shiny blue gift bag sitting temptingly on her chair but cellotaped closed, just in case, while I know she is now busy with both Chris' and Sam's. However, her eagerness got the better of her and she decided to give Sam one of his "presents" just a tad early, being the following poem (with original spelling - just keeping it real) :

Sammy, you are the best baby brother ever.
I'm sad that you have to go to hospital (for the TSC surgery)
but I'm happy because your you.
Know-one could ever want a better brother.
I am so happy that I have you as my brother.

I will be EXTREMELY surprised if she makes it to Christmas Day without handing her pressies out early.

Payton's First Birthday Party...Pics (At last)

Okay, so third attempt lucky - that's how many times I've tried to get this post out :)

As I mentioned last week, this past Saturday, 30th October, was Payton's first birthday party. And, thankfully, Sam managed to stay healthy enough for us to attend. We only managed just over an hour's stay, by which time Sam was becoming quite stressed & overwhelmed by the huge number of people there...yes, our Payton is one popular little girl! And it was also Shawn's (Payton's Daddy) birthday the following day so between the two of them it was a celebration of note. I reminded myself mentally the whole morning before the party "Remember to wish Shawn...Remember to wish Shawn." And did I? Of course not, how do you guys know me....it was only when we were leaving, with Chris, Meg & Sam already in the car and me running down the street to say goodbye to Jacqui, Lloyd, Matt & Nic, that I remembered to shout Happy Birthday! Tsk Tsk!

Anyway, Payton's mommy (Tammy) and Granny (Liz) went to so much trouble with the Minnie Mouse themed decorations and everything came out beautifully. Sam of course LOVED the Minnie ears and you could see him looking around expectantly wondering when we were all going to start doing the Hot Dog Dance (still one of his fav's).

Payton with her Uncle Kevin (who it turns out actually belongs to the same church as we do..small world)

As I said...Sam LOVED the ears - this was taken at home, several hours after the party.

As for the pics, Sam did EVERYTHING he could to make sure he didn't make it easy for us to get a good pic..which meant jumping through each shot. And of course, we got to see Sam's RTS big brother Matt, who had several other moms mesmerised by his beautifully gorgeous eyes...and for the first time, Mattie's little brother Nic who is so exquisite he could easily pass for a porcelain doll. My heart warms instantly when thinking about Jacqui & Lloyd and their precious boys, as I know for sure that I would be in such a different place without their friendship and support and the blessing of having them in our lives is sometimes just so overwhelming. So, yes, it was WONDERFUL to catch up with Jacqui & Lloyd as well.

Matt with the broken arm Jacqui blogged about recently. It was so cute to see him signing, cast & all, and of course to hear him speaking. And when I gave him a goodbye kiss on his cheek, he rewarded me with a "Mwah"

That's unfortunately the only pics we got as our camera's battery was running low.

We had a really good time - thanks Tammy & Shawn. 

Wordless Wednesday

Locked in my Heart

Over the past almost-eighteen months there have been so very many people who have left an everlasting footprint on our journey's path...some are family members, some are old friends, some are new friends, some are medical staff who have gone over and beyond what their "job" simply requires them to do to show that they truly care about Sam. All these people are so important to us - I have blogged about this before :) Besides the obvious blessing of having these people in our lives, is that we are able to tell them how special they are to us.

And then there are some who have unknowingly touched my heart :- About two weeks ago while whirlwinding through the shops, as has become the norm to accommodate Sam, I noticed a mom and a gran with what looked like about a seven-year old beautiful little girl with long brown hair tied in two pretty little bows, white leggings, a dark-pink top and super-rosy cheeks. Mom was looking slightly tense while she made an attempt to get her daughter to try on a pair of white shoes but nothing seemed out of the "norm" other than that the little girl seemed to have quite a generous helping of energy. A few minutes on while heading towards the till to pay, mom and daugther came whizzing past us helter-skelter through the aisles while in the midst of a terrible struggle to win control over the trolley which Jenna (the little girl) was trying excitedly to maneuver away from mom, completely caught up in her own little world totally oblivious to the commotion she was causing. I know her name was "Jenna" because as the couple flew past us, amongst appalled stares from other shoppers, I caught a glimpse of the desperately embarrassed look in mom's eyes while she cried in frustration "Jenna, I am going to smack you!" As we recovered from the near head-on collision that would have involved Chris and one Woollies trolley I turned around and noticed that the little girl was wearing a diaper and all of a sudden felt like I really had been hit by a trolley...or a lorry for that matter! And instantly my heart went out to mom and Jenna and I wanted to turn around and find them and tell mom it was all okay - not all the shoppers were rambling around wondering what kind of a mother she was for allowing her child to be so uncontrollable or mentally reaffirming what course of disciplinary action they would have bestowed upon poor Jenna...I wanted to tell her that we understood, but she was gone. Meg and I walked up and done the aisles while Chris stood in the queue but they had instantly disappeared.

Friday's story is a little more joyful...again, after zooting through the shop on Friday afternoon for wrapping paper for Mattie's and Payton's birthday pressies, we were walking up and down trying to assess which queue was the shortest. After Meg and I had finally resigned ourselves to the fact that the queue Chris was already in was indeed the shortest at that time, we had to "excuse me please" through the other shoppers which had since joined Chris' queue. After my last "excuse me please" to the couple directly behind Chris I went to stand in front of them with Sam on my arm. The woman's face instantly lit up in delight as she started laughing out loud then, after shoving her handbag into her husband's hands, snatched Sam from me while exclaiming to her hubby how cute Sam is, told him to look at Sam's hair, at how Sam was laughing at her....and so on and so on. Anyway, this went on literally the whole time until it was our time to pay, amidst amused shoppers and just before we turned to leave she asked how old Samuel was (yes - she already knew his name by then) and when I told her & after she commented about how tiny he is, I explained very briefly about RTS and she told us how that just made him even more special than he already is and then she told us that she has Turner's Syndrome and that she cannot have children. She gave both Sam and I a hug goodbye and as we turned to leave, exclaimed loudly to Sam that she loves him.  Once in the car getting ready to leave the parking lot I told an unconvinced Chris that we should go find them (amongst the three hundred odd cars parked there) and give them our contact details "just for sommer" (a South African term meaning "just because") but finally sanity prevailed (Hey, there's a first time for everything!) Still, deep down I wish I HAD stalked them down like a looney because the nine or ten minutes which that beautiful, amazing young woman spent in our lives has left an incredible impression and I really wanted her to know that. But now, all I can do is pray that, with the help of our awesome God, that she will one day become a mom.

There have been others, many others, whose compassion and empathy you can truly "feel" even with the briefest of meetings, as they will tell you how wonderful Sam is and wish us strength and grace. So while I know we've still to really do our "time" with people who will be more judgemental than understanding, I also know that in this particular part of the world, in this particular time there are so so many wonderful, caring people just wandering around waiting to make your day :-)

Wordless Wednesday : Meg made a "friend" for Sam

Mountains to Molehills

I have not had the privilege of a complete Sunday church service for quite some time. For at least the past two months almost every service has been spent walking Sam up and down the foyer while trying to grasp snippets of sermon through the doors. So, this past Sunday, Chris offered to walk Sam outside while I got to listen to our Pastor - and it was the perfect Sunday to be present. The service was the second of a two-part sermon, largely about Psalm 34 ("I will extol the Lord at all times,...") and, as part of the service, our Pastor read an excerpt from the biography of James Hudson Taylor. Taylor writes while his young daughter, Grace, literally lay dying on a couch from meningitis just metres away from him...it is the most heartbreaking and emotional writing, but Taylor remains at all times loyal and faithful to his Lord. Our minister struggled on several occasions to keep control of his own emotions which I found so amazing, that he allowed his own vulnerability to be seen by his congregation.

(James Hudson Taylor 1832 - 1905, was a British Protestant Christian who spent 51 years in China as a missionary. In his lifetime, he saw not only the passing of his daughter Grace but, from what I remember, at least two/three other children - including a son called Samuel - and then of his wife, Maria, whose death almost completely devastated him.)

Sam has been particularly fussy over the past few days...I first thought he might be getting ill again, but by the weekend noticed that in addition to the new tooth I saw cutting through last week he also has a set of molars cutting through as well (that's like ten teeth in four months - easy does it Sam). He is definitely a little mucousy though and his gag reflex seems to be back in full force, so when I fed him his lunch this afternoon he started coughing and after spluttering out several mouthfulls, next thing up came his previous bottle and all his food. Breathe. Breathe. Breathe again...wipe up vomit, change Sam, change me.....try again. Second attempt at lunch stayed down. Had another bottle and some tea later. Come supper time (where I pureed PUREED food just to make sure there were no gag-triggers)...and up came semi-digested milk, tea and freshly swallowed supper. Breathe. Breathe. Fight back tears. Breathe. Fight back tears. Wipe up vomit (this time with Chris's help). Change. Try again. Oh my gosh - isn't it funny how quickly we take progress and improvement for granted? Thankfully, before I could surrender myself to a full-blown sobbing, Sam (obviously in an attempt to redeem himself) started babbling in his heart-melting way and threw in a spectacular attemp at clapping his hands. As I trudged up the stairs to prepare Sam's bath, feeling all sorry for myself I tried some self-therapy....Really woman! Build a bridge! A couple of months ago it was more the daily norm for his milk and the tiny bit of solids he was eating then, to come up than stay in his tummy and after one day's vomiting you're moping around like it's the end of the world. Felt a little better, not much. (Note to self - fire therapist, she's just no darn good). Then, while the tsunami that is Sam, was having his bath (together with our bed, the floor, the curtains, the neighbour's three houses down) I thought about old Hudson Taylor and the divine strength of his faith and my mountain became a molehill.

Still my rattiness is not completely unjustified...I am hoping that Sam is not getting ill as it is Sam's RTS sister, Payton's first birthday party on Saturday morning and we have been looking forward to our three RTS angels (Sam, Payton & Mattie) all being together for the first time, for months, as well as finally meeting Mattie's baby brother, Nic, for the first time!

Sam had an appointment with the urologist Prof F referred us to on Wednesday, Dr J. He said the normal procedure to diagnose a neuropathic/genic bladder (where they insert a catheter into the bladder, inject a dye and then take several x-rays over a 45min period) is not always conclusive in such a small baby and, as the procedure is pretty uncomfortable and would require Sam to be put under anaesthetic, he was not certain if this is the route to go, although he does appreciate that Prof F needs a "benchmark" from which to monitor Sam's bladder after the tethered spinal cord surgery, in order to determine whether the bladder's condition is improving or deteriorating. So, as Prof F is currently overseas, Dr J has sent him an email to which we are hoping he will reply before Sam's next appointment with him on 22 November.

"All our difficulties are only platforms for the manifestations of His grace, power and love"
James Hudson Taylor

The most painful snack EVER!!!

Up until recently we suspected that Sam had extremely poor hand-eye coordination as he could not seem to lift an object, mainly a food item, to his mouth which meant whenever we wanted to give him a snack we would have to hold the chip or cookie while Sam, paintstakingly-slowly, "munched" away. I even mentioned it to his PT. However, when he developed his "chew-on-anything-and-everything" habit he seemed to have absolutely no difficulties holding the blanket/feeding-towel/paper/sock/shoe, etc to his mouth and so it became quite apparent that our little smurf was just a little lazy - why do it myself if there's someone else prepared to do it for me? So we decided to test our theory and put his favourite snack (cheese puffs) in a bowl in front of him to see what he would do and sure enough, after a few moments of utter bewilderment he lifted a chip to his mouth and took a bite. The first few attempts were rather shaky as after each bite he would let the chip fall, but he's become much more experienced now (even though that little angulated thumb still occasionally gets un unexpected nip). I can say for sure that he is NOT loving this new push of independence and it either seemed to affect the flavour of the cheese puffs or caused Sam some unexplained form of pain, if these pics are anything to go by...

Really Mom? Is this totally necessary? You know how I hate change!!



 Well this is what I think of your idea! To my amusement though, after emptying the bowl of chips onto the floor and mushing them around on the carpet a bit...he actually tried to pick them up and put them back into the bowl again (something I've been trying to get him to do with his shapes bucket for ages).

Sam is still keen to tolerate some time in the crawl-position, although usually collapses after trying to move more than one or two hands forward. But he'll stay in this position for ages, with a little rocking thrown in every now and again.



This (to our posture's dismay) is still his favourite thing to do at the moment. And of course it makes so many activities more accessible, like unpacking cupboards, chasing the cat, kicking the ball (which he's remarkably good at).



The two-headed "monster" which came by on Wednesday evening to terrorise our family! No, I do not know what inspired this idea, nor do I want to know :-)

For the news that we (thankfully) did not catch on camera...you'll understand why soon. On Sunday morning we decided to go out for an early breakfast and took Sam's bottle along to at least keep him occupied for the first five minutes of the meal. Sam promptly finished his bottle and immediately started with his insistent jumping. Ordinarily we dissuade from jumping straight after a bottle, but what Sam wants to do...Sam does. So the jumping continued and eventually our food came. I gave Sam a tiny bit of my flapjack to try and distract him from the jumping...but alas full bottle + reflux + jumping + gag reflex = EPIC ERUPTION! Sam's entire bottle came spewing out all of myself, Sam and Mugg & Bean's floor. And we couldn't just get up and leave because our order had only just just arrived. So they politely brought me a bucket of water with a rag to try and clean what I could of the partially-digested nestargel formula off my dress and moved us to another table. It just had to happen though - I am surprised it took this long.

Sam saw a urologist on Wednesday who is debating with the neurosurgeon whether to do a something-something urethrogram prior to Sam's surgery (tentatively scheduled for the first week of December). We are seeing Prof F on the 22 November again to finalise everything. 

And surgery it be

So our appointment with Prof F on Monday went well...not "well" as in Yeah! No Surgery! but "well" as in Prof did a thorough examination of Sam (as always - much to Samuel's disappointment) and, after collaborating with his team for quite some time, explained to us in layman's terms the pro's and con's of the operation. Basically, the tethered cord has already caused some irreversible neurological damage in just these short sixteen months, so the thought of leaving it unoperated on just to allow further damage is so much more terrifying than the thought of Sam having another surgery so soon. For now though, Prof F is overseas and only returning in six weeks so we will confirm a date shortly after his return. In the meantime, Sam is going to see a urologist next Wednesday, to fully assess his bladder issues - not too sure how this is done with a sixteen month old smurf, but should prove fairly entertaining.

Sam has been a little miz today, first thought it might be because of tooth no. 8 which just started showing itself earlier this morning...but by this evening, when he became really irritable and no amount of dancing, singing or jumping could cheer him up, I started wondering if he isn't starting to come down with something...I mean, in all fairness, it has been a whole like six/seven weeks since he last had the chest and kidney infection so he's due anytime now for the bi-monthly illness. Both Chris and I are also feeling a little under the weather, so it's not impossible that Sam's feeling the same way but without having the ability to whinge and moan about it as clearly as Mom and Dad!

Meg had her athletics day today and managed to survive the actual athletics without any major accidents (which is pretty impressive as it seems almost impossible for her to go twenty-four hours without hurting herself) but, at the end of the day, she spotted me driving up to the parking lot to fetch her and tried to run along the fence to "catch up" to the car and, in the process of trying to keep the car in sight, tripped and took a major dive into the concrete which has left her with these really attractive deep purple and red wounds on both arms, both knees and an extra big one on her right side. At least in Winter most of her bruises..and her bruises' bruises...get covered in long pants but when it starts warming up, like now, it's pretty frightening going out in public with her wearing short pants or a skirt/dress because at any time you expect to hear someone stifling a hushed phone call to the child protection unit to report the obvious abuse this little girl must be going through to sustain such marks and bruises. We weren't home long before she fell down the ladder from her bunkbed...tsk tsk. And do you think it makes her more cautious? Not.A.Chance!! I cannot count the times I have caught her balancing on the edge of that bunk bed trying to hang paper butterflies from the ceiling fan, hanging over balconey railings, climbing on top of cars, trying to balance on the beam of wood from which the swing set hangs, balancing tip-toe and soaking wet on the edge of the bathtub trying to take something off the top shelf in the bathroom mid-wash. One night, almost two years ago, Chris and I heard this blood-curdling scream which at first we thought were the neighbourhood cat's fighting as it almost didn't sound human...but next thing Meg came out of her room with a mouth full of blood...AND CHICKEN, as while munching on her dinner (which is always finished like a half hour after the rest of the family) she had been doing somersaults on her bed and misjudged and fallen flat on her mouth...mid-chew. So an emergency room and massively swollen, teeth pierced lip later...and, before the blood on her lip had barely dried, she was at it again.

Let's just hope Sam doesn't get any ideas from her...hee hee!

A very busy squirmey wormey.......!

Wow - so I wasn't even sure I was going to lay eyes...or hands...on this pc again before it came time to announce that Sam just turned 21! Our little boy has become extremely busy and just wants to be on the go all the time, which is great....if you're doing the "going" on your own. But when it's Mom (mostly) that's having to be the "vehicle" upon which you do your going then it becomes a little more taxing (pardon the pun). Over the past week and a bit Sam has progressively become more and more that "little boy" that we so often see lurking behind that mischievous smile of his....and oh boy, do I see heaps of mischief ahead of us. Firstly, it seems even the mere mention of a possible surgery seems to have jolted Sam into action as all of a sudden his sitting and "crawling" has improved remarkably. He can now sit unsupported for a good ten minutes. Although he cannot fully bring himself up into the sitting position, if he's lying on a bit of a slant he can actually pull himself up into a sitting position - those little tummy muscles are working overtime and although when he begins leaning a little to one side he still neglects to put an arm out to support himself, he just strains those little abs and somehow manages to bring himself upright again...it's quite adorable watching him and I don't doubt he's going to have a sixpack that Dad would die for! He can also, when sitting between our legs, move from a sitting position into the crawling position, supporting his tummy on our thighs and can move back again from there into the sitting position. He still ADORES jumping and is developing quite the little calf muscles to prove it and loves "walking", which is basically Sam positioned in front of me holding onto my hands and "walking". I say "walking" because unfortunately that little turned-in left foot of his quite severely hinders his stepping at the moment, making it more of a step...crab-like drag....step motion. We are scheduled to meet with his orthopaed in January again and although I considered moving it forward in case his little Sam "swagger" becomes quite habit forming, we are just concentrating on the tethered spinal cord situation for now and will first see that through before we move onto the next issue. Still, swagger or no swagger, Sam is extremely sturdy on his little legs and sometimes even gets irritated with me holding his hands and tries to shake them away. Of course, him being the incredibly tall little 16 month old that he is, his standing position puts his hands at almost the exact same level as Belle aka Kitty which, combined with Sam's still-worrying love for pulling hair, makes for many entertaining moments....for Sam that is, not so much "Kitty".

There's more....there's more....he's making so many new sounds and you can just see that desire for communication simply bursting out of him and, as I think I've mentioned before, he even has different "voices" reserved for different activities like animal conversations, keyboard playing, hair pulling, "throwing" toys, etc. And one final new "development"...Sam has gone from absolutely LOATHING being on his stomach to loving it so much that trying to change him or dress him has become so tricky that I sometimes just leave him "as is" until he's gotten his "crawling" over and done with and then try again later (unless it's a nappy change that is...unfortunately we then have to persevere). But this flip (literally) in behaviour is so so welcoming that it's hard to complain.

Sam has had seven teeth come through since mid-June and his mouth really seems to be driving him pretty crazy as a result. He will chew on anything...ANYTHING! I was standing by the window with him earlier today and next thing he had grabbed the curtains and was chewing on that! 



On to the last resort chewable items, which is his clothes. We have to try keep a bib on him lately, not to help manage the dribbling, but to prevent him from chewing on his actual sweater and sleeves.

 Now, here we have Sam's version of crawling and let me tell you, it's really quite an exhausting exercise and really rather odd as he insists on his arms and hands being under his stomach while he's doing his squirmey wormey exercise. So it first takes some time to get those hands to the side....

 Then he has to lift his bum to get them securely underneath.....

And then he pushes with his legs, squishing that little face solidly down while the little bum stays in the air...presumably for navigational purposes? Who knows!

And so the whole process begins again...and believe it or not, he manages to cover a considerable amount of "ground" this way. For obvious reasons, we've had to restrict his crawling to mainly the bed in order to avoid carpet burns on his face!!

As weird as what the whole process is for us....Sam absolutely loves that he is now a little more mobile and is always quite pleased with himself after doing a few laps of the bed!

A random adoring smile just for Dad!

So, it's been a physically exhausting and busy week, but for all the right reasons, not the usual cause being back-to-back specialist appointments or hospital stays, but filled with the most encouraging, heart-warming, beautiful moments of watching our Sam telling us in now uncertain terms that although his conquests sometimes seem few and far between...it is sometimes many and all at once!

In addition to all the above excitement, Luke celebrated his 17th birthday on Thursday. Yikes! Maybe my physial exhaustion is not completely detached from the psychological disbelief that I now have a seventeen year old son! Moving swiftly along......

We are seeing a professor of paediatric neurosurgery tomorrow morning at 11am so, hopefully, by this time tomorrow we will also know where we stand with Sam's tethered spinal cord story.

Catching Up

Wow, I can't believe it's been a whole week since I last updated Sam's blog...and since Sam's MRI results. The past seven day's have just flown by and we can't really say that we have anything to show for it, not in terms of "fun" or having done anything constructive in terms of arranging a follow-up appointment with a neurosurgeon for Sam. Well, not until today that is. I was referred to a prof of neurosurgery who, it seems to be, is quite outstanding and after first phoning the hospital from which he works and being told his first opening for us is on 27th October, I contacted him direct and he can now see us on 11th October which is such a HUGE relief. (We will not dwell on the fact that, if I had gotten my rearend into action a lot sooner, we would probably be seeing him this coming Monday already). So, four of the five-day school holidays is behind us already, with tomorrow being the last one. We at least managed an outing or two for the kids even though it was minor things like taking them out for supper last night and to Kidz Playzone this afternoon. Sam seems to be, slowly, improving his tolerance of shops and restaurants again and was quite easy to handle last night (which means that he didn't shriek and scream while either Chris or I were walking up and down the restaurant with him) but this afternoon's outing was a bit more taxing (which means he DID shriek and scream while either myself or his Aunty Debbie walked him up and down). It might be a wild guess, but there's a very small possibility that his low-tolerance might have been aggravated by the fact that by the time we went (round 2:30pm) he'd only had about twelve minutes sleep for the whole day. Unexpectedly, Sam fell asleep on the ten minute drive home (unexpected because Sam + car (usually) = shrieking and screaming, especially when the sun just happens to be shining it's merry self all over the place). I was sooooooo grateful that he was getting at least a tiny little nap which might see us through to bedtime without further S&S that I even sat in the car with him for about another ten or so minutes after we arrived home, before taking him into the house. Don't ya just LOVE kids that don't sleep during the day? Still, let me remind myself that, although he tosses and turns in his sleep as if he's wrestling some invisible smurf which inevitably wakes me up, he does still technically sleep a good ten/eleven hours at night. 

I might have mentioned it before on Sam's blog - I know I've sent an enquiry to the listserv already - regarding the fact that Sam does not seem able to use both his hands at the same time. Apart from the fact that it's quite bewildering to sit and watch him trying to, for instance, turn a toy over with that one little hand while the other hangs limply on his side, it also means that he cannot perform any tasks which would require two hands, like holding his bottle, clapping hands, etc. Well, for about the past week or so, at least once or twice a day, I sit face-to-face with Sam and sing songs which require hand clapping, like B-I-N-G-O and "If you're happy and you know it" and "Wheels-on-the-bus" (What? You didn't know that WOTB now has a hand-clapping verse...tsk tsk). And whenever there's any hand-clapping actions, I slowly take Sam's hands and clap them for him. As ol' Murphy would have it, Chris was sitting with him this evening doing the hand clapping thing (yes, for the first time) and what did our smurf do? Politely tried to clap his own hands once Chris had let go of them!!!! Oh.My.Word! I cannot tell you how exciting and so unbelievably cute it was...and there's more...he even repeated it a second time when Chris called me to come see! On Tuesday, while my dad was playing with Sam, singing some random song to him which might have started with "wheels" and ended with "round" (believe it or not we really do know one or two....or fifty....other kiddies songs, but he just really loves this one) and while singing "the Mommy's on the bus go ssshhhh ssshhhh" he put his finger on his lip to indicate "ssshhh". After repeating the song a good couple of times, as per the norm, when my dad sang this verse Sam took his own finger and put it on my dads' lips! Now, we don't know if it was just pure coincidence as Sam still has a mouth-touching/mining fetish...but we like to think of it as an intential, carefully considered action on Sam's behalf :-)

That's about it in the way of exciting news from our side. I purchased a book last Sunday called "A Different Kind of Perfect - Writings by Parents on Raising a Child with Special Needs" but have so far only made it through the first three pages of the Preface! I am hoping to have completed reading it by the time my special needs "child" is 30!

In closing, in a recent post I briefly mentioned my three cousins Gavin, Caron and Amy. Gav and I were chatting via e-mail this evening about the impact his older brother (Julian) and sister (Vanessa) had on his childhood and the way in which he dealt with his disability (moebuis syndrome). I find Gav's account of some of the memories quite hilarious, but this could possibly be because I was there either experiencing some of these wonderful moments firsthand or experiencing the gobsmacked reactions of my mom and the other family members when hearing about them. I invite you to take a look at the following link http://www.manyfacesofmoebiussyndrome.com/ to first get some background info on the syndrome which will help you understand the humour behind all the "smile" remarks and then on the lefthand side, under the heading "Gavin, updated..." you will find a touching rendering by Gavin on dealing with his disability, as well as his Mom's equally tender account of, especially, the first few years of Gavin's childhood. A quick excerpt from our e-mail....


I'm really lucky to have grown-up in ignorance about it as I see now that I haven't structured my life around it. The first time that I realised I couldn't smile was when Vanessa - in true Vanessa fashion! - was taking a photo of me out on the front lawn. "Hey dummy, stop pulling faces!" She said after I had struck a pose. "But I'm not pulling faces." I protested, "I'm smiling." Vanessa looked at me quizzically. "Don't be stupid, you can't smile!" That's sisterly love for you!  I went into the bathroom and glancing in the mirror gave what I thought to be the biggest, toothiest, ear to ear grin I could muster - and then realised Vanessa had been right! : )

Mission MRI Complete...at loooooooong last

It really was a case of "third time lucky" for us, after unsuccessfully attempting two previous MRI's (all Sam's doing I'm afraid...or rather, that of the germs which insistently invade his little body), Sam was finally scanned yesterday afternoon just before 4:00pm. It was touch and go for a few hours as our time slot first changed from 08:00am to 09:00am and then from 09:00am to 3:00pm as the MRI unit battled with a staff shortage but we eventually made it in at about 3:45pm, although at one stage it looked like they were going to move us again. We are truly blessed though to have a wonderful friend, Adele, who also happens to work at the MRI unit and who went out of her way to make sure Sam was done. Sam did really well considering by that time he had been without milk or food since 8:45am and really only started complaining round about 2:00pm. Thankfully the anaesthetist we had especially requested come out from Red Cross Childrens' Hospital to do Sam's anaesthetic was so accommodating and understanding and even though it meant a great deal of his afternoon was wasted, he stayed until the MRI unit were ready for us.

The actual scanning and anaesthetics went really well and its an awesome relief to know that Sam does not, at this point, seem to have any sensitivities to anaesthetic as, considering the MRI results, there's the possibility of another surgery in the near future - Sam's scan came back "highly suggestive of a tethered cord due to the abnormally low-lying conus at the level of L3 inferior endplate" (huh?). The second I heard "low-lying" instead of something implying, undoubtedly, that Sam has a tethered spinal cord my mind went into overdrive and I excitedly explained to Dr B that there had recently been loads of e-mails on the RTS listserv about MRI's and TSC and that, if I remember correctly, the crunch of it was that a low-lying cord is not necessarily a tethered one. Well, apparently (Surprise! Surprise!), I had NOT remembered correctly because as soon as we got our exhausted, yet-again-traumatised, dehydrated and starving child settled enough to fall asleep last night I went through all my saved mails as well as the RTS Blue Book's info and what the majority of the correspondence actually says is that in children with RTS, a low-lying cord is usually indicative of a TSC and treated so, ie. surgery.

So, our plan of action is to meet with at least two neurosurgeons so that we can make a completely informed decision about whether we opt for surgery or choose to wait it out a little while longer, whichever one of those decisions is in Samuel's best interest. I must say that I was really quite surprised at how unsettled he was yesterday in the ward. I mean, let's not pretend, Sam has a definite aversion to any person whose title begins with "Dr" or "Sr" or any place where these folk can be found...but poor Sister Marleen (she's the one in whose mouth Sam was merrily mining away when he was last in for kidney & chest infection) couldn't even put his nameband on his wrist - he became totally hysterical. So, I cannot imagine how well another hospital stay is going to go down with our young Smurf, especially if it involves something as horribly invasive as neuro-surgery. For now, until we have met with the neurosurgeons, we just pray...and pray...and pray. For what? That the MRI report was, somehow, incorrect? That the cord rectifies itself? No, although any or both of those would be wonderful, just that we can somehow avoid surgery for now without it having any kind of nasty repercussion for Sam in the way of pain/discomfort or further neurological delays.

Want to hear something quite funny though? I can't say I really gave the actual MRI result much thought through this whole process - my main source of anxiety was more the anaesthetic than the actual reason for Sam NEEDING the anaesthetic...it's like I never accepted the possibility that a TSC could be the case, or more profoundly, that Sam could have such an unquestionable "sign" that he has RTS. It's not the first time its happened and the first incident is just WAY more amusing. A few weeks ago, actually shortly after the RTS conference at the end of July, I was reading through some of the listserv's mail and it turned out many of our RTS sweeties have an indentation-type mark on their ears which many of us parents thought were unique to our own children until one person mentioned it (I think at the actual conference...I was just about to say If I remember correctly, but will rather not go there) and we all excitedly remarked how our sweeties also had it! Just after sending my "Sam has it too" e-mail I kind of slumped back in my chair and thought...well now it's unquestionable....Sam DEFINITELY has RTS! It wasn't the respiratory problems, particular facial features, feeding problems, high palate, huge red birthmark on his forehead, neurological delays or tiny stature...it wasn't the loads of hair, bowel problems, strabismus, severe reflux or extraordinarily angulated thumbs that convinced me...IT WAS THOSE DARN EAR INDENTATIONS! At least now I have a more "acceptable" account of the defining moment of our journey wherein I completely and undeniably accepted that I have a "differently abled" smurf!