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!

What's Brewing?

We are not quite certain what's up with our little Smurf at the moment but, for the greater part, he appears to be in some kind of discomfort or possibly even pain...or at the very least seems really unsettled, almost all of the time. It's been going on for quite some time now and there are so many possible causes from the rather aggressive way he is teething to him still suffering some kind of post-hospitalisation trauma from his recent kidney infection and pneumonia, which I shouldn't completely rule out as per Sam's NDT. His always-ready joyful laugh is becoming quite a rare occasion now and slowly being replaced by his regular crying and the way he violently whips himself back. In fact, the way he throws himself back is probably at the worst point its ever been...where it sometimes becomes almost impossible to handle him, as the action becomes more and more forceful. We had an incident last week where I actually almost dropped him because as I leaned over to place him in his then-swing-now-feeding chair with one hand at the back of his neck and the other supporting his behind, he arched that little back of his with such power that his bum slipped out of my hand and if it wasn't for me managing to grasp one little ankle, he would have landed up on the floor. It is so frustrating, not only because it makes some of our days pretty challenging but it's also affecting Sam's development as well because trying to get him into a sitting position now is almost impossible and even attempting a crawling position is an absolute no-no! Most importantly though, it breaks my heart to think that there might be something causing him such discomfort without me being able to determine what the source is and making it better for him.

The kidney infection gave me quite a scare because it was most probably caused by an untreated bladder infection which is really quite horrible because, as someone who has suffered countless bladder infections and related problems, the idea that Sammy had to endure this kind of pain for so long is unbearable. Even more scary, if he hadn't landed up in hospital with the kidney infection we wouldn't have known he had the pneumonia which didn't present itself when his docs listenend to Sam's chest. I decided to buy my own urine test kit and check Sam's urine every couple of days and even the most recent test, being today, showed no indication of an infection so I am truly stumped.

Thankfully Sam's MRI to rule out a tethered spinal cord has been re-scheduled for this coming Wednesday at 09:00am so, although I am still trying to figure out how we are going to manage the nil per mouth instruction when normally by that time every day Sam's already had two bottles AND a large bowl of porridge, I am quite keen to get it over with if a TSC could possibly be the cause of his misery.

Sam has also begun seeing a speech therapist again as of last Wednesday, this time for actual communication and not feeding purposes although the fact that swallowing is still not a reflex that comes naturally to him is still quite bewildering sometimes. Sam has showed some encouraging signs in that he recognises several words like "kitty, Max, fan (he still LOVES ceiling fans), Bot" (the robot which has been passed down from Luke to Meg and now Sam) and even differentiates between "baba" and "babies" - we have a collage of photo's on one wall with pictures of Meg and Luke as babies which we refer to as "the babies" and then on another wall a single pic of Meg as a baby which we refer to as "baba Meghan" and whichever one you say to him, he points with that gorgeous little finger to the correct one. BTW, there used to be a "baba Luke" as well until, with Brampa's help, baba Sam yanked it off the wall leaving it smashed into pieces on the floor! Also the fact that he points that little finger as a means of communicating what he wants or where he wants to go is also quite a big positive. So we were scheduled for another session this coming Wednesday, but obviously the MRI takes preference so will have to postpone till next week sometime.

The only thing that remains a no-fail remedy for getting Smurf's spirits up is being outside...he absolutely ADORES it, light-sensitivity and all. The second you start making the slightest move towards any door which leads outside, he becomes almost hysterical with excitement. We tentatively planned to take the kids out for the day on Sunday as, according to the always-accurate weather predictions, we were to have a fairly lovely weekend. For some reason I suggested to Chris on the spur of the moment that we do it on Saturday instead, which turned out to be an unanticipated "save" as Sunday's weather turned out thoroughly miserable with rain, gusty winds and the works. We decided to take the girls to Bugzworld which is fairly close to home as this was going to be Sam's very first proper outing to somewhere other than a doctor's room or therapy session of some sort or increasingly-occasional shop and we were quite nervous of the potentially disastrous turn the outing could take. However, we needn't have worried for even a milli-second as Sammy enjoyed every minute of the afternoon and was quite content to be walked around on my arm just taking in all the different sounds and scenes, as there wasn't really many activities for him, and even managed to fall asleep mid-swing on my lap for a fairly decent (for Sam) twenty-minute nap. It was literally only as we were walking towards the gate to leave that he started whinging a bit, so well done Sam for making it such a pleasant afternoon!

These last two pics were actually taken a few weeks ago already of Sam enjoying his very first ice-cream....or rather, enjoying MY ice-cream (chocolate of course). The oddest thing about him having the ice-cream, other than the incredibly cute choco-mouth it gave Sam, was that after each and every mouthful he neatly closed his little mouth and swallowed whereas when eating normal food he can sit there for a full 60 seconds with the food literally falling out the mouth while I try frantically to stimulate his chin to get him to close his mouth and swallow.

UNDERSTANDING SUFFERING.....FROM A CHILD'S POINT OF VIEW

On Thursday I was told a story by a beautiful young woman who, up until then, I was casually acquainted with but who I now call friend. M opened up her heart to me and told me about the precious baby girl she lost as a result of Trisomy 13/Patau Syndrome. I knew very little, if anything, about these three devastating disorders/syndromes (Trisomy 13, 15 and 18) and did not even know M during this unbelievably sad time, but her pain still seems so fresh and raw. She is such an incredibly brave Mommy, finding the strength to carry on taking care of her two older children who desperately require her love and care. M's story though has a lovely ending, in the eyes of a precious little boy called Rian who is just weeks younger than our Smurf. On Friday I heard from a dear friend and endless source of support that her beautiful family is, at this very moment, treading frantically in a pool of unknown as they wait, with unfaultering faith and trust, to find out whether their little angel is going to be okay. This evening, while chatting to Meg, I opened up Sam's blog to type a post (the details of which I can truthfully not remember) and one of the first post's I saw on the right-hand side was from Jessica's blog about an amazing little girl called Mallorie who only yesterday succumbed to pneumonia, after an extremely courageous and seemingly endless battle with her health. Mallorie had also been diagnosed with the very disorder I had only three days ago learnt about (http://www.malmalrose.blogspot.com). Of course, Meghan aka "Eagle-Eye" caught the very first line of the blog instantly and immediately wanted to know if Mallorie had RTS. She then commented that Sam has also had pneumonia and, being the ever-anxious little girl that some of you know, you could see that little mind of hers kick into "worry mode" as it calculated that pneumonia + child = death! I carefully explained to her that firstly most children that get pneumonia recover extremely well but that sometimes, like with "special needs" children or children with cancer, AIDS, etc, their bodies have had to endure so many illnesses and conditions that their immune systems are just too weak to help heal their bodies. She still looked panic-stricken so then told her that little Mallorie did not have RTS...and that seemed to reassure her, whether rightfully so or not. Her next inevitable question was (as she has asked me this before) "Why do children get RTS and cancer and other sicknesses?" I have obviously not completely satisfied her mind with my previous answers, but its a remarkably difficult concept to explain to a child. I ran through pretty much the same explanation I gave her the last time, which was that God in no way creates children with special needs/cancer/illness, etc but that, we believe, the Devil will try anything to turn as many people away from God as he can, by doing whatever he can, and that sometimes God allows these things to happen so that we can turn to Him and pray more and become closer to Him. Also, sometimes, not only do we become closer to God, but we learn how to comfort others and help others who are going through the same thing as us. But, alas, even before I finished, I could see the same old expression that said that that just isn't a good enough reason in her mind. So, if anyone out there has any suggestions/advice on how they have explained this to their children, I would be ever so grateful. I don't want her to start losing her fresh, untainted adoration for her God and so, eagerly look for the right words to answer her question. The question of why God allows suffering is surely one of the most asked questions in the Christian community...I know I've asked it a good two or three (million) times! Just this morning after church ("church" still meaning me and Sam patrolling the foyer throughout the duration of the service) I said to someone that I honestly don't know how those who have no faith to fall back on, regardless of how fragile it might be, endure their own challenges and tribulations. And, speaking from personal experience, I have tried "going it alone" and it is simply impossible. Make no mistake, having at least a smidge of faith and trust in Him, certainly does not make one's pain or hardships any less formidable...it does, however, prevent it from consuming you as there is an unexplainable and, often, unexpected strength that helps you endure your trials.

MORAL INTELLIGENCE

On several occasions, over the past few months, I have either read in a blog or e-mail another mom or dad's account of a time when they have felt the sometimes insensitive, other times just plain cruel, disdain of another parent in whatever particular situation they were in, whether it be a shop, restaurant, or wherever. I have always wondered how I would feel when this, seemingly inevitable, experience would happen to us. About three months we came as close to this as I thought we could when unexpectedly running into a "friend" who, for whatever unknown reason, I have not heard from for quite some time. I do know that this friend knows about Sam's condition as we have a mutual friend who i am still occasionally in contact with. When her daughter first spotted Meghan getting out of the car she shouted hysterically "Mom! Mom! It's Meghan." And so-called friend pretended that she was being blinded by the sun and could not see or, apparently, hear what her daughter was saying (an interesting fact I learnt that day as I did not know you could be deafened by the BLINDING sun as well). As chance would have it, we were headed for the same place and so I approached her to greet and ask how she's been, with drooling, shrieking Sam hanging "pouch-style" over my arm, in front of me. Not once during the all of four minute conversation did she acknowledge or even look at Sam, but that could've been due to the excruciating pain she seemed to be experiencing while speaking with me. Yes, it hurt a little, but not enough for me to dwell on for more than a day. On Tuesday afternoon while strolling with Sam in-arm towards the school gate to collect Meghan, a car stopped alongside me and I heard a friendly "Hallo" from a fellow-mom who also knows about Sam and has always been really kind and interested to hear how he is doing, etc. Her oldest child was in Meghan's class last year. We had just barely begun the conversation when her youngest, about six/seven years old, sitting in the seat next to hear suddenly asked her (while squinting at Sam) "Why does that baby look like a monkey". She replied, "Shame, that's not nice." To which he defended his statement with "But there's something wrong with his eye".  I can't say I have ever really thought about what I should say or do if a situation like this did arise - but did not think I would react so utterly poorly, which was that I first stood there looking at young boy, mouth open, eyebrows twisted with the incredible effort of trying to think of something....ANYTHING...to say. Saw Mom's mouth moving and vaguely heard her trying to change topic by asking something else, but only replied "Anyway, have to go now" and turned and walked away. I do so understand that obviously this little boy was not intentionally trying to be rude or hurtful (at least I hope not) or that I could not have expected his mom to turn around and lambast him for a situation which he has never been prepared to deal with but, as nice as what I have always thought his mom to be, I do feel that her reaction (or lack thereof) did not teach her son anything, therefore better preparing him should he one day face a similar situation. Now, I am sure many would challenge that he is too young to "know any better" but I would then beg to differ. Dr Michele Borba (author of Building Moral Intelligence : The Seven Essential Virtues to teach kids to do the Right Thing) says that most parents believe that you can't begin teaching virtues to kids until they are at least in Grade School, but that in fact this should be done right from birth when children are amazingly and intuitively responsive to being "good". Borba also says that parents have a choice which virtues to teach their kids and feels that there are three CRITICAL virtues we need to teach our children to ensure that they become caring and compassionate people, the very first virtue being EMPATHY! The other two, conscience and self-control, are the three virtues which make up the moral core. (Amusingly the following question was quoted as a means of explaining empathy "How do you think this makes Sam feel?".) My nine-year old daughter took it upon herself earlier on this year to find the "right" words to explain to her Grade 3 class what RTS and "special needs" are - I only found out from her teacher a fair while after. Now surely a woman more than four times her age could have thought of something? Perhaps I have set too high a standard for what kind of reaction I expect...for good reason. I did not really know till I was probably almost in high school what "special needs" was. Digressing a little, quickly - I grew up with two very close cousins who were both born differently abled : my cousin, Gavin, who has Moebius Syndrome (http://www.moebiussyndrome.com) and my cousin, Caron, who has Phenylketonuria (http://www.pkunews.org) and later, just before I turned eighteen, a third cousin, Amy, born with Down's Syndrome (Caron's little sister). We spent heaps of time together then, at the very least, almost every Sunday was spent as a family...and I don't remember anything else other than two smiling, light-hearted, life-loving, child-adoring and good-humoured aunts who made mothering a child/children with special needs look no more challenging than being a mother to any one of us, in fact, they actually made it look like a breeze and only since Sam's birth have I realised how very much I admire both of them for being such wonderful moms - they made caring for differently abled children seem effortless and have most certainly, unawares, become wonderful examples to me. And, speaking of examples, back to the point (if there actually is still one hidden in all my mumble jumble). I remember going to a shopping centre with my Aunt Alvie and cousin, Gavin, one afternoon when I was roughly about eleven/twelve years old. I remember a boy of roughly the same age as us pointing and making a remark (which always brough an instant rush of anger towards the offender and, just as quickly, a feeling of protectiveness towards Gav. In fact, my sister and I would instantly launch our own attack with our how-dare-you, shame-on-you, now-you-deal-with-us glare). Anyhoo, this boy's mom had the decency to pretend to reprimand the boy by turning him away and leaning over him to, supposedly, give him a talking to but out of the corner of her eye I actually caught having a good old gawk herself. Thankfully, even before Sam was just a twinkle in his Mommy's eye, I tried to instill in both Meghan and Luke the importance of never making another person, regardless of their physical appearance or behaviour, feel that they are an object to be stared at and/or pointed at. If they do have something they would like to say or ask me about, they can do it in the privacy of either our car or home or whichever surrounding would enable them to find the right words without having a hurtful effect on other human being. Setting an example for our children is one thing...but much like an exam paper, just because you set it doesn't mean you write it...we need to BE the example with our own actions.

NAILED TO A CROSS - AN AWESOME LESSON

I thought of starting this post off with "What a week we've had...." but we've done that one already, so how about "What a MONTH we've had...." or rather "What TWO MONTHS we've had..." but does it really matter? Yeah, yeah...we've been through a rough patch again...who hasn't, right? But, as debilitating and (seemingly) impossible as what the challenges might have been, it's really what you take away from it that counts!

So, let's start this one with.....WHAT AN AWESOME LESSON I LEARNT RECENTLY!

As far as what my memory serves me (which isn't saying much these days -but let's pretend I can still occasionally remember an important fact or two like my name, telephone number, how many kids I have....two kids, right? Or is that four? Three? Okay, Okay...I know it's somewhere between two and five...although with all that quarelling it could well be TEN!) Anyway, where was I.....as far as what my memory serves me (hehehe) I don't remember a time since Sam's birth when I truly felt hopeless...defeated...and if any situation was going to make you feel that way, surely having a child with more challenging needs would have done it? Alas, this has not been the case with our family and although I feel it best not to go into any detail, we were faced with a situation which left me with those very feelings....hopeless....defeated.....and only now that the cause has eased off a little (temporary though it might be) and I have found myself in a stronger state of mind, can I actually reflect on it although now with a shadow of shame and guilt.

The "situation" (I have to apologise - you must be dying to know the details...maybe one day) has played itself out over a long period of time, but recently came to a pinnacle point. On it's own it would have been a struggle worthy of a World War title....but more devastating is that the major player involved goes by the label of Christian. The situation left me feeling absolutely, completely powerless...isn't that how you would feel if the power to protect your baby was taken away from you? I am not too self-righteous to admit there have been times when I have asked why God does not seem to hear our prayers...our pleas for help...but this was just on a completely different level. Whereas, as heartbreaking as it sometimes is, I do believe that Samuel is every inch the tiny person God meant for him to be in order for him to fulfill a glorious purpose here on Earth but I could just not find any possible reason for why He would allow this kind of tribulation.

Selwyn Hughes says that Christians sometimes nail themselves to a cross and how accurate he is...we chastise ourselves for something, long past the Lord's ultimate gift of forgiveness...and not only does this distance us from Him, but serves no purpose as we self-inflict a sentence already borne in sacrifice by His own Son. Well just as I was wondering if it isn't better....no, EASIER....to rather surrender my own Christian identity as opposed to having to fight Satan for the right to keep it, I realised a fundamental error I had made....failing to give up control of the situation because I believed that He had done just that. And then I doubted whether I still deserved His Grace after having committed a fundamental error in faith. Over those couple of days I cannot tell you how many "coincidental messages" I received reminding me that He NEVER leaves us, even though our troubles sometimes cloud our ability to see Him there and I have to express how vital it is to have friends and a fellowship-family whose beliefs mirror your own.

So...the "situation" is still not yet resolved and will take some time to be so, if ever...but our Smurf is FINALLY on the mend which is such an AMAZING blessing to be thankful for. On top of everything else (as if a kidney infection is not enough) Sam decided to bring a little gastro home from the hospital, which was promptly shared with first myself, then Luke and finally on Thursday afternoon with Meghan. And how is this for a "The Joys of Being a Mom" moment...Luke and Meg were both flatout for at least twenty-four hours with the bug, both nauseous and suffering excruciating stomach cramps combined with a delightful fever and complete loss of appetite, much like the symptoms Sam and I had. On Friday afternoon Luke asked me "Why didn't you have to stay in bed when you had the bug?" Like..you have GOT to be kidding! Uuuhhmmmm, let's see Luke...I was contemplating flopping down onto the bed when the cramps and nauseau made it almost impossible to stand up straight, but then I thought of the unwashed baby bottles, unmade Nestargel, unwearably filthy clothes, unmade dinner, etc etc and suddenly the wave of jealousy at who was going to steal my daily pleasure of carrying out these chores completely washed over the wave of nauseau!

Back to our little Smurf who - when the tummy bug first settled in, went off his food and then eventually (for a whole day) went off his milk - finally has some sign of his appetite returning. I tested his urine yesterday and it was completely clear, which is also wonderful. His nose is still a little snotty and congested but hopefully that will clear soon too. The teething is just another issue on its own, although I fear I might be to blame. I distinctly remember a few posts ago saying wouldn't it be great if Sam cut all his teeth in three's! Boy, this would be one of those times when my short-term memory loss wouldn't be a bad thing. Well it looks like Sam's been reading his own blog because...low and behold...that's exactly what's happening again! The little smurf's gums are completely red and swollen, seemingly everywhere. And not that he ever really LOVED going to the shops, but he has developed an utter aversion to being in a shop...which usually plays out in the most hysterical screaming fit. But he remains so completely and heartwarmingly adorable with his little sing-song voice, no-longer-toothless smile and ever-searching fingers for the closest, unsuspecting mouth.

Luke's rendition of Sammy Smurf

Sam's unrelentless attempts to get his hand in someone...ANYONE'S....mouth is not just reserved for friends or family, even the nurses at the hospital are not safe from those little prying fingers (and we wonder how he landed up with a tummy bug in a hospital after exercising such wonderfully hygenic practices).

It's been a while....

....since Sam treated himself to one of the awesome treatment packages offered at the Netcare Hospital Spa and so after entertaining his 39.1 fever for a good twenty-four hours, we decided to try out a new "two-for-one" deal which consists of a pretty ferocious flu bug and, last but certainly not least, a kidney infection.

Yip, almost four months to the day Sam is back in hospital being prodded, monitored and, his least favourite, being stuck (literally) with a drip - which is already being done for the second time today as the first attempt left him with a bloody foot and Chris with a bloody sweater and pants barely ten minutes after arriving to relieve me. Interestingly (or rather, worringly) the previous stay in hospital was also four months before THAT one. Let's just hope and pray that there's no pattern forming here. Sam is scheduled for a sonar scan within the next half hour to see what's going on with those little kidneys which might be making him sick.

So we have a really sick little Smurf on our hands at the moment who still, as always, remains full of smiles and chatter for the nurses and, unless he's in pain, pretty darn joyful - which is why we all, especially Megs, miss him so much and hate to see him going through this all again...so soon. Needless to say, it looks like next week's MRI is again going to have to be rescheduled.

Now let me rush off to make the most of my "hygiene" break, in the best interest of all the other patients moms and medical staff:-)

The Wheels on the Bus go......CLAMP! CLAMP! CLAMP!

Or should that be...the wheels on the Hyundai GET...clamped CLAMPED CLAMPED!

This week started out pretty okay - on Monday we had a follow up visit with Sam's orthopaed to see how his thumbs were getting along. I expected to be spending a good one-and-a-half to two hours at the hospital as it would involve first going to see the orthopaed, then down for x-rays and back up again for the results and that's roughly how long it took the first time. We (I dragged Luke along with me and Sam) left home a good forty-five minutes before our appointment as I can NEVER find close enough parking which means we walk a good kilometre or twenty from the car and the weather was looking a bit ominous (still) so I figured I'd give us enough time to drive round the entrance hoping for a leaving patient/doctor. We had a choice of two routes - a) being much quicker and as-the-crow-flies direct but entailed driving along the R300 and N2 highway which are both notorious for a wide variety of issues from terribly inconvenient roadworks to more violent issues like brick-throwing, protesting, blockades, etc. and b) being a more detoured route with loads of traffic lights, congested roads, etc. So I opted for route a) and just as we turned from the R300 onto the N2 noticed a double-cab to the left of us completely surrounded by a minimum of about one-hundred-and-fifty to two hundred people and thought to myself...mmm, people round here sure are friendly - this poor motorist has obviously run out of petrol or something and look at all these folks offering to help out.

Anyway, arrived at the hospital with a good ten minutes "parking search" time but after circling at least three or four times and down to about two minutes left to not only park, but haul myself, Luke, Sam, baby bag, blanket, sound-making baby book all out of the car and up to the third floor. Eventually I resigned myself to a, technically, illegal parking spot which was situated right on a bend. The "technically illegal" part didn't concern me too much because there were at least ten other cars also parked "technically illegally" but was more worried about being parked on the bend. Was literally about to step out of the car when I noticed a burgundy Citroen pulling out of a parking bay across the road, so quickly threw all and sundry back into the car and pounced on the parking spot, practically bumping the Citroen out the way.

As we walked into Dr Carter's rooms we almost didn't have enough time to sit down before he called us in. Took a quick look at Sam's thumbs and sent us down to radiology. Again, as we walked in the radiologist was standing in reception and called us in immediately, Sam was SUPER co-operative and four x-rays took less than four minutes. Back up to Dr Carter's rooms and again straight into his office. He said Sam's thumbs are looking really good, the bone in each thumb is growing beautifully. He asked how physio was going ......

Dr C : So Sam is using his hands again as normal?
Me : Yes
Dr C : And he seems to be moving the thumbs as normal?
Me : Yes
Dr C : And he's grasping objects as normal?
Me : Yes
Dr C : And he's crawling as normal?
Me : Yes
Dr C : And....
Me : Whoaaaaa! Goofy-Crazy-Mamma Say What???

It reminded me of those age-old jokes where the guy falls off the ladder, breaks both arms, both hands, all his fingers, etc and when leaving the hospital he asks the doc with these pleading eyes " Will I still be able to play the piano?" and the doc replies "Yes" and the broken-armed guy leaps with joy, exclaiming how wonderful that was, as he could never play before!

Anyway, two half-consultations, four x-rays and twenty-eight minutes later we were headed out the door, me beaming from side to side and gushing to Luke about how pleased I was that it had all gone so quickly and smoothly and what do we see when we reach the car - my wheel has been clamped! I was in such a rush to grab the "open" parking bay I didn't bother to look where it actually was - which was right in front of a roller-gate at the entrance to another section of the hospital. Thankfully the security guards were still standing there, in the process of sticking the notice to my window and they were so completely understanding (even though they'd been read the riot act by an extremely angry motorist who had had to drive his car over the pavement to get through the gate) and agreed to unclamp my wheel without me having to pay the penalty fine.

On the way home, while still showering the Lord with thankfulness that I'd escaped the clamping-catastrophe, I heard a warning on the radio advising people to avoid the N2 as protestors were blockading vehicles in the midst of a six-day long strike! Whoaaa....let's turn up that thankfulness shower..mmmm, and make a mental note to listen to the radio more often!

On Tuesday we had our carpets replaced, which was kinda like moving house with all the inconvenience of packing, etc but WITHOUT the pleasure of the new house afterwards. The fitters took six and a half hours which meant that Sam and I were basically confined to our bedroom for six and a half hours and the constant hammering and banging works wonders for a child with sensory problems. When they were working close to our bedroom, which was a good couple of hours, Sam literally flinched with each and every hammering/banging...do you know how much hammering/banging goes into 70m² of fitting carpets? A lot! Thankfully, three broken floor tiles and a headache for me and, I am sure, Sam too the fitters left. One good thing came out of the day and that was that Sam's rescheduled MRI was confirmed for Thursday, 2 September.

This morning Sam woke up very moaney and whingey...and after vomitting his cereal up after a particularly inconsoleable bout of crying, was sporting a lovely temperature of 39.1. So, he is sleeping restlessly while I type this with an unrelentless fever still sitting at 38.3 even after three hourly administering of medication. So, I guess we are off to the doc again tomorrow which is a little frustrating as only eleven days ago he finished a sixteen day course of antibiotics....like come on Sam, can we at least split the healthy/unhealthy days 50-50....or is this just some kind of MRIphobia, that coincidentally you are sick again...mmm.

JUST CALL ME "RAIN MAN"!

A couple of days ago I was complaining about the incredibly short and dry Winter we've been having here in Cape Town....well I reckon there's a whole lotta people with abandoned weekend plans, cursing at me right now as gone is our lovely sunshine! And having posted it on Sam's blog kinda makes it difficult to innocently say "Who me? Of course, I am not responsible for jinxing the warm weather!"

Yesterday morning started out sunny and warm as usual, but by the time Meg and I took Sam for our afternoon walk, the skies had already started clouding over.

And by this morning, this is the view we had from our lounge window....

...and that's pretty much how it's stayed the whole day. So, we've hired a dvd (Nanny McPhee's Bing Bang) and are staying put. On the upside - I've decided to start my own Weather Manipulation Service - WMS Incorporated. Need a change of weather? Just call and I'll come round to your house/town, whinge a bit about it and before you know it...!

Signing off with a pic of Sam whose sun hat (temporarily not needed) was turned into a "sailor's" hat!

DELICIOUS GENES

I didn't think it would ever happen, at least not within the next ten years...or twenty, but it really does seem like Sam is getting used to his neurotherapy. We have had at least two, could possibly be three already, sessions which did not leave Cathy and whoever else happened to be at the practice at that time, being washed out the front door in a flood of vomit, tears and (sorry for the graphics) snot! Although most of the praise goes to Sam of course, I do have to mention that the common factor in these last sessions is Meghan though who runs around like a mad thing shaking rattles, singing "Wheels on the Bus" and whatever else she can do to distract him. Sometimes it's almost as if he is enjoying it all (well, who wouldn't enjoy a show like that) and then all of a sudden he remembers "Hey, what am I doing man. This is work, remember, not fun......" and then it looks like we're headed for disaster. It's so funny, but Sam sort of has this type of "silent" cry stage when it's like he knows he SHOULD be crying but he really doesn't feel like it....so the lip goes, the little eyes get squeezed shut...then the mouth opens wide and.....NOTHING! And then he takes a breathe and WWWWAAAIIIILLLL...the little siren is eventually jumpstarted. He is such a character, my little smurf. But back to NT - so Sam is still not sitting, although we are really caught between trying to figure out if it could be as a result of the tethered cord or simply just Sam being Sam, because yesteday Luke and I had him on the bed and got him to sit for a good three or four minutes (while we were entertainting him with WOTB of course) and he didn't look too uncomfortable in the sitting position, which he sometimes does. But, lucky for us, they have these wonderful things called MRI's which means we don't have to rely on our own guesswork after all, so we should know within the next couple of days when Sam's has been rescheduled for. Sitting aside, however, Sam has been doing quite well with his "crawling", seeing as we really only started focusing on it last week. He can spend up to seven or eight minutes on his hands and knees and although he can't yet co-ordinate the moving of his hands and knees without collapsing, he has started rocking back and forth. So this is like SUPER exciting for us, because although Sam's "alertness" does seem to progress, although slowly, there's basically been no change in his achieving those more physical milestones. It's really quite mindboggling because if you hold two of the animals from his Noah's Ark toy in front of him, one being the horse (which is the only one he knows so far) and say to him "Where's the horsey?" he reaches for the horse or when you ask him "Where's the kitty?" he immediately looks to the floor to look for her. When you say to him "High Five, Sammy" he'll lift his left hand, but yet he can't hold his bottle or sit, etc. it's just so incredibly fascinating. Sam's babbling has also increased much to our delight and now that there's a tooth at the top of his mouth as well, each "word" is sort of bitten off with a Sam-version of a tooth grind, if not completely uttered through his teeth nashing....even when I wash his face, he catches the washcloth in between those little teeth and we have a playful little tug-of-war. Here's a pic of Sam and Cathy practising his crawling, with Meghan doing what she can to keep him focused (although in this pic it actually looks like she's taking a bit of a nap). I think one of the fairly disheartening areas of having a child with special needs is that, to a varied extent, they inherit more of the syndrome's characteristics than their mom's and dad's. Don't we all love pointing out which of our most endearing traits our children have inherited (while, under hushed tones, blaming the less appealing traits on our spouse). Well it seems that the gene responsible for the incredible "love" (I was tempted to say "addiction" but not sure if I could speak on behalf of Chris) Chris and I both have for food was just too much for Sam's particular Chromosome 16 to stand firm against because he most definitely has inherited this. You can absolutely NOT eat anything in front of him and that tiny little elf mouth starts eating imaginary whatever it is you are eating. And, sensory integration issues or not, he has no sensory problems with food. And I ABSOLUTELY ADORE IT! I will never take for granted the absolute joy you experience at being able to treat your little one to a chippie, a cookie, a marshmallow, a piece of orange, some biltong and even, believe it or not, some spinach and feta pie. Fair enough, he only takes tiny little bites and chews that tiny morsel so so thoroughly. I have to say that I am really quite proud of Meghan and Luke, they are both really wonderful with Sam and are always eager to play with him, even though (especially for Meghan) it usually means at least one fairly OUCH-moment when he manages to grab a handful of her hair. He still has this really testing habit of hair-pulling and he definitely knows what he's doing because he gets so excited, even his voice changes pitch. It's bad enough when you're sitting down and he grabs your hair, but on three occasions (and both in the shops on top of it) he's managed to stick out that little hand at just the right moment and grab Meghan's hair while she's walking in front of us, which means DOUBLE OUCH for Meg.

But, moving along onto a far more worrying topic......HAS ANYONE SEEN OUR MISSING WINTER! Seriously, I am NOT a Winter person or, rather, I wasn't until last Summer when we battled so with Sam's sensory issues which were heightened by the warmer temperatures and brighter daylight, etc. and I just couldn't wait for Winter so I could wrap him up when he slept, etc. Well it would be generous to say that we've had two weeks of proper Wintery days. It's totally absurd, especially considering we're less than two weeks away from Spring. I don't even think I've worn a quarter of my Winter clothes (and this time it's not just because I can't fit into them anymore) and haven't once yet put a jacket on.

But of course, the kids are loving it and even Luke got into the mood by helping out with some gardening. Oh No, hang on...that's not right - it's all coming back to me now. He's had his privileges taken away was trying to work off some of his "time". Phew, got myself worried there for a second when looking at this picture. Although Meg and Luke spent more time discussing what needed to be done, than actually doing it...with Max supervising the lot of course. Chris' and Luke's bright yellow shirts provided some lovely entertainment when a group of "bug-type-thingies" mistook them for two giant yellow flowers and started attacking them.

THE NEW "DO" - PHOTO OVERLOAD!

Some quick Smurfy News just to bring you up to date on our little man :- Things were pretty dismal towards the end of last week, besides Sam's battling to breathe and drink, etc Sam was scheduled for an MRI on Friday to check for a tethered spinal cord, but because of his being so ill we've had to postpone until two weeks after he finishes the current antibiotic, so we are probably looking at the end of Aug/beginning of Sept. By Saturday morning Sam was looking so much better and had had a pretty peaceful night's sleep as well so we made a last minute decision to make the trip to Stilbaai, but last minute travelling plans being what they are I left at least half of everything we needed (from medicine, clothes for myself, bottles....no, REALLY, bottles!) at home. Sunday morning we were wondering if we'd got a little ahead of ourselves because Sam seemed a bit worse for wear again, but by Sunday evening he bounced back again. Sammy is doing WAY better than last week, he is on Day 7 of the new antibiotic and from Monday already his nose had started clearing up, making things like breathing, drinking and eating so much easier again. So, onto the pics :

It took Meghan and Chrisna all of about two minutes to completely destroy my mom-in-law's spare bedroom. But, understandably, they needed the room to be as hectically untidy and played-in as possible in order to feel at home :-)

PASS THE....UUUHH.....SAM?
Sam had to make up for plenty of missed "holding" time as we were last in Stilbaai in December. And doesn't he just look soooooo unhappy about constantly having a willing arm being held out to him? So, here we are with Tannie Janina...

and Ouma....

and Oupa even got a turn!

On Sunday evening the girls (Meg, Chrisna and cousin Elisma) and their Build-a-Bears put on a fashion show for us which took about five hours to prepare for amongst giggles, tears & loads of lipstick and perfume...and took all of about five minutes to present to us.

Sam of course had to get in on the act and modelled the eyewear!

The weather was MISERABLE with a capital BOO HOO as the girls were dying to go outside to play and we were very brave and even took Sam's stroller along to finally be used for something else other than carting our parcels around in in the shops. Alas, both the stroller and the girls remained in doors.

MY FAVE THINGS TO DO WHILE SPORTING MY NEW DO!

I have learnt that if I stretch out my arm and hand just so, Mom, Daddy, Brampies or whoever is holding me gets really excited because I am "showing them" where I want to go or what I want to touch which means I have loads of fun grabbing things like the tv remotes, magnets off the fridge, papers, cups....whatever my little heart desires. I have also learnt that then suddenly dropping the recently acquired object to the floor causes just as much excitement as they quickly bend to pick it up and place it in my hand again, just to have me drop it again. Weird!

Oh look! You can almost spot two of the four teeth I now have....three at the bottom and one at the top. It makes eating Scooby Doo cookies so much easier.

I love laughing at my big brother Luke who, like the rest of my family, goes to just about any lengths to make me laugh..they really are such a silly bunch. I sometimes wonder what passersby must think! Tsk Tsk!

Ohhhhh...and I do still LOVE labels and just flicking them with my one pointer finger, back and forth....back and forth....sometimes it even makes me sleepy and I feel myself nodding off. But, DON'T WORRY...I quickly recover because I know Mom would probably faint if I suddenly just fell asleep so easily and I don't want her to get hurt. I know she doesn't have far to fall but you never know what cat she might crush or toy she might damage on the way down!

I absolutely adore sticking my three fingers in EVERYONE'S mouth and then whangling them under the victim's tongue and scratching like crazy. But this bunch are such wimps, they moan and whinge in pain...as if it could actually hurt them. I mean, what's a bit of blood & broken skin if it makes me happy, after all.

Oooooooohhhhhh...I am so super sneaky. I pretend to whisper gently in Luke's ear that I think I might have won the "best do" contest...and then, without warning, go in for the kill!

He's just pretending that it actually doesn't hurt for the sake of Mom taking the photo, but more often than not he yelps in pain, especially now that I have these marvellous teeth to crunch the skin between.

Thanks for popping in - I hope you enjoyed seeing my pics as much as what I loved making them. Hope you'll visit again soon!

FORGIVING A SPECTACLE

First, for some news on our smurf - we are still drowning in mucous. Yip, I know that's pretty graphic, but trust me, it really is THAT bad. And of course, as if we needed any more triggers, therapy today was a dream...or would that be a nightmare...with poor Heidi being vomitted on not once, but twice by our almost-always hysterical Sam. So, I am afraid, our chances of making it to Stilbaai are looking slimmer...although Meg is praying like crazy (I am not too sure that there isn't some self-serving purpose in all this praying). She "packs" for Stilbaai every day....and when she is finished packing and re-packing, then she makes a list of what all she has packed for when she re-packs it again the next day in case she forgets what she packed the previous time (it's exhausting just thinking about it). So far her Build-a-Bear has four bags which is going to be interesting as Chris has told her we are all only allowed one bag each. Let's hope she can do some SERIOUS body-squeezing if she's going to have to share Tiffany's (the BAB) clothes.



When Meg's got home from school yesterday, instead of changing out of her uniform into casuals, she decided to put on her pj's....yes, in the middle of the day! A short while later I asked her if she'd like to take a walk down to the post box to post a letter she had written to her best-friend Danielle, who has recently moved to another city. Of course she was eager to go, but not so eager to get out of her pyjamas....she was comfortable like that, after all, and if she didn't have a problem with it, why should I? The second we started heading towards the gate, Max started jumping around and getting all excited, obviously presuming (as he always does) that he was going with...so, we asked Luke to put on his lead (Max's, not Luke's) and come with us. Well, as you can see from the pic, Luke was far from impressed first with Meghan's daytime apparel and secondly because Max literally stops every 5 metres, either to rest (he isn't the fittest dog around) or to mark that particular section of sidewalk. Talk about creating a spectacle - one gentleman completely stopped in his driveway and had a good laugh, although I can't say at who....my pyjama-clad daughter, my exasperated son....or just simply at Max who rather resembles a miniature bear.

On a more serious note, the concept of forgiveness has really been clouding my mind lately. Over the past couple of weeks there have been several occasions when either I or someone in my family has been "hurt" or I have heard a story or read a blog about an insensitive act causing pain/emotional trauma to someone. And I know the theory surrounding it all, which is that because we are blessed with God's forgiveness when we ourselves have done wrong, we are in turn to forgive those who have done us wrong. There are times when this is something we do without even giving it a second thought, but there are other times when putting that theory into practice is a whole lot easier said than done, especially when you don't see any remorse in your "offender" and, even worse, you know for sure that if they had the opportunity to know that their actions would hurt you, they would still go ahead and do it anyway. When I least expected some clarification on how to actually achieve forgiveness, last night I read something out of a book Meghan and I read together ("Time For Two" by Danila Liebenberg). "Life offers no guarantee against pain. Pain is often caused by people who hurt you. As soon as you are hurt, you have a choice to either forgive this person or to wait in bitterness until that person receives his due." And then she goes on to suggest the following steps in order to achieve forgiveness :

"Admit to yourself what has happened to you, what it has done to you and how it is still affecting you. Do not be alarmed and draw away from how you really feel. Ultimately the truth sets you free. Pray that God will help you to forgive. Ask God's help to pray for the person/s by name. Forgive the person in prayer and in thought. Allow your pain to make you aware of how pain can affect others.

True forgiveness is an active deed. Forgiveness is not an instant trip or an instant cure. It could take you months, even years. Take the steps towards forgiveness at your own pace. Walk the long road of forgiveness to the end, DO NOT TURN AWAY."

Danila's suggested approach on achieving forgivess by literally breaking the emotions down to their core by having to admit that that person hurt you, and the surrendering of pride that sometimes goes with being able to admit it (ie, I can't believe that I allowed myself to be hurt by THAT particular person) and then allowing yourself to heal at your own pace, really encouraged me to make a greater effort at being able to forgive. Sometimes forgiveness is "romanticised" by the idea of simply going through the motions of "forgive and forget" and expecting a wonderful peace to befall you, without actually having searched your heart and admitting to yourself exactly how you were affected by the wrongdoing. So here's to pursuing true forgiveness!

MADDAY! MADDAY! Man down!.......

....Oh No, another man down......Double OH NO! Now we have a smurf down!

My goodness folks, what a week we've had...and by that I mean...WHAT A WEEK WE HAVE HAD!

FRIDAY last week started with the traumatising and harrassment we've become accustomed to over the years from a certain "Adversary X" (I am not going to go into any further details as I would hate to poison Sam's blog with the relentless negativity which surrounds this person). So, Adversary X's T&H continued into late morning on Saturday.

SUNDAY: Good friend Kim remarked at church that Sam's top upper gum looked quite swollen and that he would probably be getting another tooth soon (her youngest is one year's old so she still has such things fresh in her memory). I thought "Easy Peasy Lemon Squeezie", the first three have come out quite easily without much ado, surely this one will follow the same pattern.

MONDAY: As brilliantly predicted by Kim, Tooth No. 4 made it's appearance and with it a firm statement that there would be no "Easy Peasy" here. Along with the little bit of grumpiness the latest addition had brought, Sam was having some rather painful bowel movements and screamed in pain every time he dirtied his nappy.

TUESDAY : Morning - Sam still screaming in pain with every bowel movement and, to add some further excitement, Adversary X throws us another doozey! I decided to make an appointment with Sam's paed to discuss the tummy problem Sam seemed to be having and got an appointment for Friday which wasn't too much of an issue as he's had these episodes before and they seem to right themselves after a few days. Afternoon - the fatal attraction sinus infection I've had for like the last 2 months decides it's certainly not getting enough attention with all my self-medicating and decides to spread its cheer by going into my ears and throat. Late Afternoon : Meg comes to me complaining of lower abdominal pain when she goes to the loo to make a Number One.

WEDNESDAY : Wake up with whhhhiiiirrrrrroooooosssshhingggg noise in my ears and hectic bags under my eyes from not being able to sleep due to blocked nose. Wake Meg up for school, who immediately tells me the pain in her abdomen is still there. Decide to give her some Citrasoda as this has happened before and to give it some time, make an appointment for doc for myself, who confirms sinusitis & upper resparitory tract infection and prescribes an antibiotic. Arrive home from my doc's appointment and find Meg in hysterical tears because "she is weeing blood". Make another doc's appointment and go off with a rather dodgy looking urine sample. Doc confirms Meg has hectic bladder infection...AGAIN!...and prescribes an antibiotic. Meghan has this unbelievable fear/phobia about going to the loo at school and so holds it in from roughly 7am in the morning until she gets home after 2pm in the afternoon! She got a talking to from both our GP and paediatrician so hopefully we won't be doing this again anytime soon.

THURSDAY : Wake up to the sound of Sam's snotty nose - oh no, not another patient! In the afternoon spend twenty minutes watching Sam agonise through what-was-supposed-to-be-therapy but instead becomes a flood of tears and runny nose. Cathy confirms though that Sam definitely seems to be coming down with something - disappointment sets in, we were planning a surprise trip to Stilbaai for the long weekend. We were going to keep mum about it and then wake the girls up on Saturday morning and say "pack your bags, we're off to Stilbaai". Now our plan looks like it might not happen.

FRIDAY : Have, as always, a thorough consultation with Dr Bristow who says that he thinks Sam might be coming down with another viral infection and being the wonderfully efficient doctor that he is, gives me a prescription for an antibiotic just in case. We also discuss Sam's tummy problems, still very obvious delays (like sitting, etc) and then the signs that Sam is showing which might indicate a tethered cord (the turned-in foot, no-sitting & seemingly small capacity and erratic bladder). Dr Bristow feels this is something we need to check out sooner than later and has already begun the process of scheduling an MRI. We won't mention about with who, it was decided, the blame lies for Sam not being able to fall and stay asleep at night.

SATURDAY : Sam has full blown viral infection - coughing, sneezing, runny nose, gagging from all the mucous, etc. good call Dr B! So we had a wonderfully sleep-deprived night :-) Still we decide to hold off on the antibiotic for one more day but by Sunday morning, after yet another sleepless night and mucous that is going yellowy, we fill the script and give Sam his first dose.

So thats where we are today (after yet another sleepless night) - waiting in anticipation for any indication that we might still be able to make it to Stilbaai. Of course the bottle-drinking is going just SWELL! The last bottle took almost two hours, Sam first tried to drink but couldn't breathe & swallow through the same orifice, then I tried to suction him to clear the nose but this made him scream, which produced more mucous, which then again left us at square one with him not being able to drink...aaahhh, the joy! Eventually after a hysteria-induced sleep, we managed to finish the bottle.

And now for a few pics......

Sam is soooo happy to have splintless/bandage-less hands with which to practice his keyboard with. Although he became quite creative while they were still in splints and would quite efficiently use his feet instead.
He even found the time to give Dad a few lessons

It was Chrisna's birthday on 17 July so we took the girls to Grand West for some ice-skating & rides at the mini-funfair. Sam managed to fall fast asleep in the middle of it all, even though we sat right next to an ice-rink of screaming kiddies!

Luke refused to be in any of the photo's but wouldn't miss an opportunity to sneak those darn bunny-ears in somewhere.

Luke and Sam are having a competition to see whose hair can become the most unruly by the end of the week......and I think that........

Sam might take this one!

And even though our little smurf is so sick, he still finds the time to shower us with the most beautiful smiles (in between the screaming, gagging, coughing & spluttering that is).

TIGHTROPE LESSONS

I was watching a documentary on tv one afternoon last week ("watching" meaning parked on the floor surrounded by various toys/activities with Sam on my lap, simultaneously pressing and singing along with the various melodies, while trying to lipread what's been said on the tv). This particular program was about developmental, intellectual and emotional milestones of one-year old babies and the various factors which influence the timing/mastering thereof. So, needless to say, it was not the most uplifting thing to have watched (I shoulda just stuck with Barney or Mickey Mouse Clubhouse) and I had to keep reminding myself that a) these were all "normal" babies and b) with the exception of one, they were also all full-term babies. I didn't think the documentary had really affected me THAT much until afterwards when, as always looking for something new to entertain Joyful Smurf, I decided to try out a few of the "tests" with Sam and he only seemed able to work through the one task, which was sitting face-to-face with baby and then placing a sheet of paper between the two of you, the objective then being for baby to move the paper aside to see you again - which Sam did actually do. It was a little disheartening, but oh well - we went along our merry way through the next few days....or did we?

I am not sure if it was watching that documentary or something else completely but over the past few days I have found myself frantically trying to help Sam "catch-up" to where he should be developmentally...and it is EXHAUSTING! Now, let's first understand that Sam is nowhere near being neglected or ignored, he is 95% of the time either on my arm, in his pouch, on my lap or attached by some other means and I talk to him constantly, we sing...we dance...we play and I've been fairly satisfied that he is getting a considerable amount of stimulation - but all of a sudden it hasn't felt like enough, to the point where I started timing the periods in between interacting with him, for example, I put him him down so that I can attend to something quite basic, like brushing my teeth, (I have an OCD thing about teeth-brushing...it has to be done for a precise amount of time, in a particular way, a particular order, etc) but then I start thinking like "Okay, he's been in his cot now for like 3 minutes - is it okay for him to have no stimulation/interaction for three minutes?" and then almost every morning I land up standing next to his cot, spluttering some-or-other kiddies song through mouthfuls of toothpaste. Another example - I take Sam for a walk in his pram most afternoons. We only walk for about 30 mins and he usually kips for most of that time, but yesterday afternoon he didn't fall asleep AT ALL and I kept looking into the pram and he just appeared to be staring into space and I started worrying about how long it would be okay for him to just lie there and found myself hurrying the walk up, just to get home and onto something else. And that's basically the essence of how our days are being spent....okay, we've sang songs now for twenty minutes, time to press buttons on Noah's Ark to hear the different animal sounds...okay, time now to walk around the house and point out different objects and say their names...it's like running an endless race.

So I am really battling to find that perfect balance between providing Sam with just the right amount of stimulation for it to be beneficial without going overboard and having either him or I landing up like those cartoons you see on tv where the person's head starts whizzing round and round and round, faster and faster, smoke starts erupting out the top and next thing the whole head EXPLODES! I am in desperate need of some tightrope lessons to help me figure out how to walk this RTS line because one minute I am dangling precariously on one side by my little finger, manage to pull myself up to a kneeling on all-fours position....and before I can even manage to stand up....FFWHHOOOOPP! I'm hanging off the other side again!

LOOK MA, NO SPLINTS!

Heeeeeehaaaaaa!!! (Said in true Jessie-from-Toy-Story-Style)..Sam's splints and, more importantly, wires are gone since yesterday afternoon at 12:45 and all is good....REALLY GOOD! The pulling of the wires went so well, we were in and out of Dr Carter's rooms within 15 mins and, apart from a slight flinching, Sam didn't experience much discomfort and certainly no pain, at all. The thumbs still look a little "puffy" which seems to be partly some residual swelling from the procedure and partly because of the excess soft tissue but other than that the actual cuts look great and already the scars are fairly unnoticeable. So, as per doctor's orders, it was back to normal immediately...and we started off, of course, with a bath and (shout for joy) no plastic bags, clingwrap, cellotape and all the other accessories/contraptions we've become used to over the past few weeks. There's still a little bit of dead skin around the thumbs but already by this evening most of it seems to have been washed away.

Now you see them........now you don't!

Sam looks really happy to have his old "fleshy" thumbs back as opposed to those awful plastic thingies we had inconsiderately strapped to his hand..tsk tsk!

And of course the first place that thumb went (leftover blood, stitches, gauze and all - yum) was in his mouth and with wasting no time mind you - on the ride home!

I tried to get a better pic of what his thumbs look like but trying to get ol' Joyful Smurf to keep his hand/s still is not that easy, so this was the best I could do.

Well, it feels so great to be on the other side of Sam's very first surgery and now I also know that, should another thumb surgery be on the cards, I can definitely anticipate it with a whole lot less anxiety and fear! (Notice I say "thumb" surgery....any other surgery will more than likely cause the same amount of panic....Hee Hee).

So, what else has been happening? Sam seems to be getting a bit mucousy and croupy again...I am just praying that it goes no further than what it is now and we have our last Synargis injection for the season tomorrow so maybe those antibodies will give any germs a blasting (not even sure if it works like that, but here's hoping). When I fetched Chris from work on Friday afternoon I took the whole troop with me into his office and of course Sam LOVED the attention...all the ladies were standing around him and he just adored it and mustered up every bit of charm he could. He is definitely one attention-loving babe and knows just when to smile and play coy - do I see a casenova in the making? I thought that it was impossible to have a child that could be anymore "busy" than Meg but it seems as though, as unexpected as what it is, Sam might be proving me wrong but its an AWESOME unexpectedness I must add. There is not 5 mins of the day when he can be left alone without someone dancing with him, playing with him, singing to him (I've still to post my Sam-adapted versions of Wheels on the Bus, Old Macdonald and BINGO)...Sam received an awesome CD from his Aunty Vanessa for his birthday called Silly Songs which are mostly all the favourite kiddies songs but tweaked a little to include a Christian element, and Sam loves this CD. So, as tiring as what it is to keep up with him, his mind constantly sponging up every bit of stimulation/interaction and then asking for more is just an indescribable feeling at the moment. Sam was lucky enough to have a second "birthday" when his Granny and aunts, uncles and cousins came for a visit and hit another jackpot with some stunning birthday pressies...thanks again guys, with a special thanks to cousin Amy (another blog in the process - more soon) who specially picked out a beautiful outfit for her cousin Baby Sam!

On Saturday afternoon Meg, Chrisna and I went to watch Toy Story 3 which the girls loved but I felt was a little bit "violent" towards the end. The girls didn't seem to notice much so it all turned out well. On Saturday it is Chrisna's 8th birthday and we are going ice-skating - hope they have a size "tiny" ice-skate for Sam (what a better way for him to work off his energy). And of course today was back-to-school for us here in Cape Town, after 5 weeks of holidays.

"HAPPY ARE THE PEOPLE WHOSE GOD IS THE LORD!"

Psalm 144:15

Just to let you know

You have clouded our way with obstacles,
Have thrown at us all that you can,
And continue to hunt our souls,
Attempt to turn us away from the Creator of man.
And, yes...there are times when we falter, when we think yours is the easier way,
When our voices struggle to shout to you FROM GOD'S PATH WE WILL NOT STRAY.

Our enemies rise against us,
Blood rich with your enchanting darkness.
The constant battle begins to wear us down,
Fills our hearts with sadness.
But through the thoughts of worry and despair, a messenger delivers this verse
That reminds us to focus our thoughts on the heavenly and not the perverse.

"Whatever is true, noble, right, pure, lovely, admirable -
If anything is excellent or praiseworthy - think about such things."

So we close our eyes and take a deep breath,
Knowing what lays ahead.
Then we say a prayer and stand up once again,
With a smile this time instead.
Now we'd hate for you to waste your time,
So thought it best just to let you know,
That our hearts are strong and our faith is our shield
And YOUR WAY WE WILL NOT GO!
(Nicky de Beer : 11/07/2010)