Remember this.....

26th December 2009  

And while we know the more traditional, dare we say, "normal" way of measuring your child is with a measuring tape and growth chart, we say PHOOEY! to normal and once again bring in.....

 ...the 2litre coke bottle.

As you can see, Sam is doing some sitting again, without any problems. Was not sure if it might result in a bit of discomfort or even pain in the beginning, but it doesn't seem to be the case. We're still trying to maintain some "flat time" a couple of times each day and haven't allowed him to stand or anything like that yet. I still cannot believe how relatively easy it was to enforce the five days of down time AFP ideally hoped we'd manage...somehow I think the problem with Sam's right leg which, for a couple of weeks prior to the op, forced him to adapt to more sitting and lying down than he was used, played quite a significant role in preparing for a very relaxed recovery period as he has never been quite so content to just sit on the floor or on our laps reading or being sung too, etc.

Sam is having an even more trying time than usual with falling asleep in the evenings...perhaps a lingering bit of mild-trauma from the surgery, but we have to be patient and allow him some time to settle down again, even when it takes (like on Sunday evening) almost two hours and a great deal of vomitting before he eventually cries himself to sleep regardless of any amount of walking, singing, lying with him, calming music, a night light...you name it, we've tried it. Already last night went a bit easier and it only took about forty-five minutes to get him down. And speaking of throwing-up, his gag reflex has taken on a whole new dimension to it's sensitivity, where he's even battling to keep down his most-loved foods like vanilla custard and oats and honey. Again, we're going the patience and tolerance route for now and, even though its not nutriotionally the best solution, sticking to the more easily-tolerated of Sam's diet. Will wait it out another week or so, but I think after that we'll have to ask his ST and paed for advice. It's really quite strange though because after his thumb surgery he had this really fabulous appetite.

We are off tomorrow morning to meet with APF's associate, Dr F, at 7:00am who is going to re-dress Sam's wound for him as APF is currently enjoying some much-deserved time away. Quite keen to reassure myself that the wound is doing okay, having taken all Sam's stunts and acrobatics into consideration, which couldn't have made healing all that much easier. Also keen to find out how much longer Sam has to remain "bath free" - apart from the obvious delight Sam takes in his evening baths there's the obvious hygiene problem. Sam has at least one thorough bed bath per day, some times as many as two or three, with all his increased throwing-up but we still haven't found a way to wash that serious mop of hair yet, without putting strain on his back. So, Sam has to make do with me doing what I can with a washcloth and jug, but it's just not doing the trick!!

Although it does look kinda cute afterwards!

This time last year........

Found this pic taken at BCC Christmas Dinner last year. Well, the physical changes are obvious like the extra four kg's we now carry around on our arm and the ten new teeth, which were nowhere to be seen then, but it's the changes not visible to the eye which are amazing like Sam's much-appreciated appetite for food...and sweet goodies too, his being able to sit, starting the motions of learning to crawl, ever-loudening voice and increasing desire for stimulation and interaction.  He's had a busy year, our little Smurf, filled with three chest infections, a couple of viral infections and one kidney infection, five hospital stays, two surgeries, approximately forty-odd therapy sessions and countless upon countless throw-ups, thousands of precious smiles, scores of uncontrollable, tummy-erupting laughing and more sneaky hair-pulling incidents than Meghan cares to remember.

On this our sixth day after surgery, Sam is a little more painful and uncomfortable than the past few days as we've decided to start weaning him off his pain meds so he had a not-too-pleasant night last night and was quite miserable this morning. Instead of having him go "cold turkey" and seeing how upset he was this morning, we've put him back on a half dose of the meds for another day or two and then try again without from Monday. The thing about the meds is that, although I obviously do not want him to have to endure any unnecessary pain, I am a little worried about the affects of having been on them for six days now and am also worried that, while pretty much painfree, he is hindering his healing by being as active and super-busy as always.

Today we are going to try Sam with some sitting up....but in between that, we'll still be.....

Spending time in the pram

and lying around on the "Christmas Bed" we made, watching tv or

playing keyboard with Meg and Dad

Lying under the grapevine while dad takes care of the OCD knocking for Sam

Having Brampa and Meg sing Mickey Mouse Clubhouse songs

Sam's "sore" area which has somehow managed to stay pretty much in tact considering the amount of rough and tumbling Sam has put it through - quite remarkable. 

And just a random pic of our precious little boy!



We are very relaxed and low-key today, my mom is coming down tomorrow to spend a couple of days with our family and, of course, to see Sam. So, to all our family, friends and loyal followers - we wish you a Blessed Merry Christmas and thank you for being a precious part of our journey so far. 

It's true....we're home!

Just forty-nine hours after Sam came out of theatre and we are home. Wow! No, really.....WOW! On Monday morning, when handing our Conqueror Smurf over to wonderful Dr Burke the tears I had constantly been fighting off for the previous few days (and not always successfully) got the better of me and, with Sam in a position to be spared my mini-meltdown, I let rip and bawled for a good few minutes...all the way down to the cafeteria for something to drink. As we were waiting to pay, Chris placed a faith token down on the counter (we'd purchased one for each of us a while ago, didn't think he still knew where his was)....

And, on the flipside....

Lord, help me to remember that nothing is going to happen today,

That you and I can't handle TOGETHER!



I was still a little too emotional to pay it much attention, gave Chris a smile, slipped it into my pocket and we walked back upstairs to monitor the theatre doors. Sitting there doing nothing was unbearable and it wasn't long before our anxiety reached epic proportions and I was pretty sure I was either having a heart attack or having the most unbelievable panic attack with chest pains, hyperventilating, nauseau and the works. How great that would be....Prof Fieggen comes walking out of theatre to tell us how amazing surgery went and here I am sprawled out on the floor like a crazy person. Life Vincent Pallotti Hospital was founded by St Vincent Pallotti and although his vision has been somewhat distorted by modernisation and Christian-based political intolerance, there is still an idiosyncratic spiritual essence present, heightened when we saw a nun or two walking through the passages. So I suggested we take a walk to the chapel in an attempt to calm and reassure ourselves and to further prevent our fear from allowing us to focus on what we know in our hearts, that God has carried Samuel through so many trials and challenges, from even before Samuel was presented to this world, and that He will continue to do so.

Still a little uncertain of what to expect when Sam came out of theatre and with very very many trips to the loo indicating that not all anxiety had completely vanished, I did feel heaps better and in more of a position to haul out every last bit of strength and faith I would need to be there for Sam. Chris still remained quite anxious and when we started approaching the two-and-a-half-hour mark in theatre, became quite distressed even though I reassured him that we'd rather have Prof Fieggen taking his time to ensure an excellent result. We will never forget though the feeling of overwhelming relief and pure joy of hearing Prof coming through the theatre doors to tell us that the surgery was a huge success. Minutes later Dr Burke came through to tell us that Sam was doing well and was completely calm and relaxed, other than occassionally wriggling his toes. He was fast asleep when they wheeled him out of theatre, none of the hysterical crying and thrashing about I'd feared. And he pretty much remained like this.....

...until just before 3pm that afternoon. How precious he is, our brave little Smurf. 

Unfortunately no children under 12 years old are allowed in the ward, so Meg and Chrisna had to make do with occassionally sneaking a peak through the doors to see how Sam was doing.

On Day 2, as previously blogged, Sam's catheter was removed and it certainly made him hugely more comfortable. Sam's night nurse for both evenings was Sister Miranda whose care and attentiveness to Sam, together with Sister Claudia on the first evening, was remarkable and so comforting.

Yesterday morning (Day 3) Sam's drip was removed and although it made him a little more mobile and able to hold things, he was in no mood whatsoever to play as the frustration of being so limited in activities coupled with his sensory-based issues of dealing with the unfamiliar surroundings, completely took over.

At least, without the drip, I had more space in which to walk Sam around, in an attempt to calm him down a bit but having Dad getting in the way while taking pics of a rather miz Sam and equally miz Mom, was not too pleasing.

That grouchy frown was quickly turned to into a smile when APF, after asking if I was comfortable managing Sam's care alone, said that we could head home. And so it was goodbye's all round to what nursing staff we could find.....

..and to our Awesome, excellent-catheter-inserting (private wink wink) Prof Fieggen,

who was determined to get a much-eluded smile out of Sam for the pic and, with Murph and Sam being such good friends, the second I moved the camera away Sam DID smile up at Prof.

Side-stepping (something I very rarely do, you know) about something I am very passionate about...finding doctors, specialists and therapists in whom I have unfaultering faith and trust, both in their abilities and, just as importantly, their compassion and drive to do what's not only medically best for Sam, but emotionally and pyschologically best as well. Although there are one or two doctor's we've had to choose not to continue seeing purely because of impracticality in distance, in our short nineteen months we have already encountered a handful of practitioners who I do not feel would have been able to meet these exceptionally high standards I have set for who I choose to care for, as all mom's believe, one of the most important and precious little beings on this planet. And so, I have tended to err rather on the side of emotionally-based decisions when I've been in the unfortunate situation of having to choose between character and experience. But more and more often we have been blessed to have the most amazing doctor's come into Sam's life who greatly exceed all our expectations in both expertise and compassion and manage to find a place into our heart's.

Without doubt, the glory of Sam's unexpectedly speedy and fairly trouble-free recovery belongs to the Lord, but this does not take away from the certainty that we would have had a completely different experience had we not had such an amazing team responsible for Sam's surgery, headed up by Prof Fieggen who obviously executed the actual surgery, with Dr Burke taking care of Sam's anaesthetics again in addition to seeing to Sam's general wellbeing both over this period and at all times by always been willing to offer advice and reassurances on Sam's care, by pulling the whole surgery together when we thought it might be postponed again and who referred me to Prof Fieggen, together with Dr Sinclair (paediatrician) who oversaw Sam's care at the hospital. We truly believe that, whether they are aware of it or not, the Lord has manifested their roles in Sam's life to help him achieve his purpose here as a testimony to others that with God, all things are possible.

So, it feels almost surreal to be at home with our little Smurf fast alseep in his cot at the moment, even though he slept from 7:30pm last night until 9:25am this morning...yes, it is definitely our child we brought home - we have the hospital Id tags to prove it. Obviously, we have made no plans for Christmas as we'd anticipated still being in hospital right up until Christmas Eve, if not Christmas Day itself, so it's quite entertaining watching the rest of the world go by in a hustle with last-minute shopping and preparations as we sit back quite relaxed with no other plans other than to help our little smurf heal.

Before I sign off - we wish to thank each and every person that has prayed for Sam, enquired about him and/or offered help in any form as they too have been instrumental in making this journey easier to bear :

Especially to Granny, Ouma and Oupa, Uncle Joe, Aunty Mandie, Aunty Anthea, Jacqui (Matt's mommy), Aunty Janina and Aunty Cammy for their many sms's and calls, as well as to Aunty's Saskia and Anny, Hendrik, Henriette, Colleen, Lee and Nic the girls, Aunty Tammy (Payton's mommy), Diane Louw & family, the de Freita's family, Adelle and Marthinus and the girls, Aunty Vanessa, Rona, Catherine, Megan W, Aunty Eulita and Uncle Allan, Jurgen and Kim, Alexander and Joshua, Mason Josias's mommy, Jessica (Alex's mommy), Cindy (Natalie's mommy), Brandi (Nathan's mommy), Vickie (Jodie's mommy), Marianne, Trevor & Family, Quinton and Mildred, Uncle Willie and Aunty Elspeth for Sam's precious teddy and to each and every member of Brackenfell Community Church who have been praying every Sunday for weeks and at every bible study and Sunday school class and a special thank you to our Pastor Johan and his wife, Ilse and their daughter, Janie, who made quite a lengthy trip to the hospital on Monday afternoon just to pray for Sam and to anyone else who we perhaps do not know personally or perhaps a name or two or (in my case) ten which I might have forgotten to mention here.

Wordless Wednesday : Day 3...Guess where I am...

Day 2

Sam - 6:42am




I've had a really peaceful night's sleep, despite the trouble it took to get me there. When I woke up yesterday afternoon it took me some time to realise that firstly, I was not in my cot at home or in mom's arms and secondly, I had all these pipes and tubes attached to me which just reminds me of that awfully long time I spent in NICU. The sister quickly gave me something for the pain but panic had already set in and it wasn't long before I'd crossed that inconsolable line, leaving me rolling and thrashing around in the cot in what could have appeared to be a comical rendition of the horizontal twist. Of course, my panic became everyone else's panic that I was going to hurt myself or, worse yet, cause a leakage of spinal fluid which is why it is so important for me to be lying flat and still. It was quickly decided to rather sedate me. While the nurse prepared the meds, mom was allowed to give me 50mls of milk...if you can call it that. It's actually more like trying to drink your porridge or a cheeseburger, as dad had to super-thicken the milk. As if that wasn't bad enough, along came mom with a syringe containing 4mls of seriously vile-tasting sedative. Now, if you don't know me very well you would think BIG DEAL! WHAT'S 4mls? And then I'd have to educate you on how I do NOT take any other liquid in my mouth other than my milk and, very rarely, some tea. So, 20mins and some choking, gagging and crying later the sedative was down the hatch. APF (Awesome Prof F) then came to check on me and I thought it a good idea to keep the folks on their toes a little longer, so by the time he'd entered the room and was listening to mom and dad frantically trying to explain that I really HAD been trying to wreak havoc, I lay sweetly and peacefully in my cot, the picture of gorgeous blue-eyed tranquility. Thank goodness for mom (who was secretly scanning the room in search of a hidden camera which might testify to their claims) restraint (or lack thereof) got the better of me and it was back to the horizontal twist.



If there's one thing I've learnt over the past 19mnths it's that parents sometimes take really long to train...I mean,there I was...dripped, cathetered and cut open, in a strange room, with strange sounds and strange smells and still I was expected to just quietly and calmly put myself to sleep, NOT in mom's arms, which is how I always go to sleep? Really? APF, being the APF that he is, then said that mom can hold me as long as I stay flat. Yah for me and YAH for mom. So, although it proved a little challenging logistically, I was soon in mom's arms and just as quickly fast asleep.



I am not sure what the rest of today holds but I do know that I have an incredible and divine God who watches over me...Who brought me safely and successfully through my surgery, Who has instilled his love and caring in so many which shows in the number of sms's and call's mom has received about how i am doing, Who gives mom the strength to care for me and face my challenges with me, Who has a whole team of angels watching over me...some in heaven, some here on Earth.



Mom - 2:30pm



Our little smurf has had a rough day, has been really uncomfortable and troubled since about 8:45am and has only now fallen asleep, two sedatives and numerous painkillers later. He also managed to desemble his catheter again and tear the plaster loose on the catheter and drip three times each. Wailed PLEASE HELP ME's to all and sundry (me that is, not Sam) and APF has just been to check on Conqueror Smurf and agreed that the catheter can be removed, which removal Sam performed himself while the sister was still taking the tape off! Sam's feeds have been increased as his reflux seems to be keeping itself in check so the drip will probably come out as well. Nothing symbolises healing like the removal of tubes!!

Tethered Cord Surgery : Day One

It is 12:02pm at the moment, here in the High Care Ward at Vincent Pallotti hospital and I have been out of theatre for just about an hour and a half. I vaguely, in my post-anaesthetised state, heard Prof F telling mom and dad just how well my surgery went and how the filum was released with a slight t-t-t-w-wang, so prof and my folks can rest assured that me having the surgery now was definitely the best thing for me.




Right now mom and the nurses are waiting for Dr S to come solve the puzzle of how, with me being down flat coupled with my reflux, we are going to get some milk and food into my tummy.



I can tell that mom and dad are super pleased that everything went so well, although with our awesome Prof, together with our wonderful Dr B, i really can't imagine what they had to be worried about. Prof has given me a local anaesthetic into the area surrounding the wound which should keep me painfree for another ten hours or so, after which dealing with my frustration at being so immobile together with whatever pain i am going to have becomes Mom's baby...pardon the pun.



For now i am going to sleep a little longer, comforting the folks with my precious snoring/"sleep humming".

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!

 

Christmas Concert Pics

On a high-note, Sunday saw us enjoying the much anticipated Christmas Concert by our Sunday School at BCC and it all came together beautifully thanks to the many hours of practising and hard work put in by the children and Sunday school teachers alike.

 The costumes and props were gorgeous made by Aunty Saskia who also co-ordinated the whole concert.



 Even the teachers took part : Aunty Diane, Aunty Helga and Aunty Francis

 And Meghan and Chrisna took their parts very SERIOUSLY!

 Uncle Grant (who heads up our music ministry) also got up on stage and lead the congregation in the singing of "Mary's Boy Child", while Aunty Saskia prompted the children from the floor.

 Two beautiful angels

 Our "extended" family



On a rather low-note : we are not sure what is up with our smallest little angel. Since Thursday last week, Sam seems unable to tolerate any weight-bearing on his right leg, being his "strong" leg. For those of you that know how passionate our little Smurf is about walking, standing and jumping you will understand the concern in this. We had a series of x-rays taken yesterday from hip to toe of both legs, but it shows absolutely no indication of any fractured bones, which was my first worry especially taking into consideration the seemingly increasing occurence of our RTS-sweeties suffering with brittle bones as well their exceptionally high pain threshold. At least though a fractured bone would have provided us with an answer as to what could possibly be preventing Sam from using his leg as normal.

As jumping, walking and standing took up a rather large part of Sam's activities for the day he has found himself having to make do with things like sitting (for sure, his least favourite activity) and playing with toys.

 His body language says it all...

We are hoping that whatever it is that is bothering Sam rights itself soon

And....back to a high-note : Chrisna's step-dad, Heinrich, takes photo's for a stunning non-profit organisation called :  "Race to Live" whose vision it is to make it possible for children/adults who are suffering with life threatening diseases see their dream of experiencing a racetrack, come true.

Chrisna with her mom, Rona, and step-dad Heinrich

Me and my friend, Rian!

Hey Everyone! How are you all doing? I am doing great at the moment, it's been just over three months since I've had any illness which is like a super record for me. And there are so many nice things that come with being healthy like being able to have regular playdates with my friend, Rian. In the beginning I thought the playdates were more for Mom's and Aunty Mandie's benefit so that the two of them could get together and chatter away so I decided I needed to put more effort into it and take control of the situation by showing how much I enjoy spending time with Rian so the second he came into the room yesterday I flashed him a great big smile just to let him know how happy I am that we are friends.

Mom and Aunty Mandie tried to take some pics of us yesterday but Rian loves biting his nails, so I was trying to help bring the picture together by holding Rian's arm.

Rian thought it was quite funny!

And physio's being going well too, I hardly ever cry anymore, much to Mom's and Aunty Heidi's relief.

On Sunday, Ouma and Oupa came to visit from Stilbaai. They brought early Christmas presents for everyone, which are nestled safely under the Christmas tree next to the, now, three presents Meghan has been making for everyone. But my pressie was a great big bag of play balls so Mom thought it would be okay for me to have a go at them now already. I am slowly getting used to them, in the beginning they freaked me out a little but it does help when Mom and Meghan act like goofballs trying to juggle the balls and throwing them around in an effort to make me laugh. They are like SOOOOO embarrassing.

Bathtime is so much more fun at the moment now that I can sit. A few months ago Mom received a gift of sponges from a workshop she attended at Aunty Grietjie's and at first I was quite content to have them sitting on the side of the bath with me or trying to grab them as they float around in the water but recently I found that they are quite nice to chew on as well.

So that's what I have been getting up to lately. I am quite loving my food at the moment and now drink 180mls of milk at a time and finish a whole jar of Stage 2 baby food at every meal - okay, it is the small jar, but it still counts. Mom keeps bugging me with trying to give me all sorts of juice or flavoured water, etc to drink now that the days are getting warmer and warmer, but she just doesn't get that I don't like the stuff - as if my gagging and whinging isn't enough evidence. Thankfully we've had almost a week of no juice-drinking attempts - phew! And I do so love being on my tummy now - bathtime and nappy change times have become my ultimate opportunity just to prove how much. Sometimes it can take up to twenty minutes for Mom or Dad to try and get my nappy and pj's on after my bath, while I roll around like a goofy, naked spinning top on the bed, more often than not still with my sponge/cloth in my mouth. Mom has tried to take some photo's but I am afraid they are just too explicit for this blog...or ANY blog.

It's been great chatting to you all seeing as Mom's always trying to hog the posting - yip, she's a blog-hogger alright! :)

Oh...Oh! I almost forgot. Check out the new link to this really amazing website Mom's had me added to - it's on the righthand side of my blog - just click on the beautiful Prayers for Little Angels picture with the teddy bear.

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 :)