I AM SAM.....THE CONQUEROR!

Bathing Bloopers

2012-01-30T11:42:00.000+02:00

I never imagined bathtime could be such an incredible source of entertainment. On Friday evening we tried out Plan A which was that I would put Sam in the bath with me then, once Sam had enjoyed some bathtime playing and had been washed, Chris would take him out and dress him. Within minutes I was silently "Whoop Whooping" to myself as, after not a moment's hesitation to get into the bath, Sam lay back, super-relaxed kicking and sing-songing away to himself while he played with his foam numbers. Ahh...the sweet joy of success. And then Chris came to take Sam out to dry and dress him and Sam screamed BLUE murder....literally - he turned blue from all his screaming. So...on to Plan B.

On Saturday evening Chris got into the bath with Sam. Although taking Sam out at the end of the bath was pretty uneventful, Sam refused to sit down in the water. So Chris ended up having to hold him upright while I washed him...which is just about as effective and successful as Chris simply holding him over the bath like we found ourselves doing last week.

On to Plan C : last night we tried Plan A again with a slight modification. Instead of Chris taking Sam out of the bath and, obviously the problem, away from me...I would try and get both Sam and I out of the bath at the same time. It would of course prove a logistical nightmare with me having to hold onto Sam while lifting us both out of the bath. Still, I thought it was worth a shot and had the bath been a little shallower, Sam been a little smaller, me been a little stronger and ever-so-slightly more like Mr Fantastic from the Fantastic Four, Plan C could well have worked. Unfortunately it was just plain ol' me, Sam and our thirty-something year old, metre deep bath (well at least that's what it felt like). So after an almost dislocated shoulder and knee, it was decided that Plan C is not do-able either.

If it wasn't so frustrating it would be unbelievably hilarious! What am I saying? It's still hilarious! Especially last night's episode. So...on to Plan D tonight which is a plain and simple shower for me and Sam. We've done it before, we know it works and, although it means that Sam has to skip out on his playtime in the bath, it's the best we can do for now. In any case, if all goes well and Sam's surgery goes ahead on Friday we'll be doing about two weeks of "bed baths" regardless of sensory issues. There's always a Plan E....

Which in our case would be the BAD method! Just kidding!

Speaking of surgery...in an already unsure mind as to whether Sam will be good to go for Friday because of his fairly congested nose and up-and-down temp again over the past couple of days (high enough for me to have to give him some meds on Saturday and yesterday) Meg, unintentionally of course, has us even more concerned as she is in bed today with a stomach bug. Keeping her mostly confined to her bedroom is not proving to be too much of a challenge as she's feeling quite miserable and is quite happy to just lie in her bed...so my plan to tape up her doorway and feed her her meals from outside the house, through her bedroom window might not be necessary after all. Which is really quite a pity as I imagine it would have caused quite a stir with the neighbours.

In closing, some random pics (some already seen by my FB friends) :

Who needs those R299 "crawling buddies" from Toys R Us when you have a Meg

(when she's healthy of course)

Conquering SPD

2012-01-26T22:47:00.000+02:00

I have mentioned several times on this blog just how challenging I find dealing with Sam's Sensory Processing Disorder and have even stated the extreme on occasion...that sometimes I find the SPD more debilitating than his RTS. Naturally the more extreme statements are usually made after a particularly difficult incident or phase, but nevertheless I have no doubt that SPD on it's own, without any other additional diagnosis or condition, could handicap a child severely enough to cause major neurological delays and social complexity. With Sam's SPD going through erratic changes, almost on a daily basis, I have been trying to read up as much on the condition as I can in the the hope that I might just discover a course of action we might have overlooked or any other useful piece of information that might prove helpful. I have read many accounts of what it feels like to have SPD, some of which report that having SPD is like :

having a whisper sound like yelling
feeling like your clothes are all made of fibreglass
being in a moving car of which you have no control with none of the equipment working properly
not being able to sense your body's position in the space around you or as one person put it "You felt like someone had given you a shot of Novocain in your backside so you couldn't feel if you were sitting in the middle of your chair or the edge and you fell off"
You could see obstacles in your way, but you could not make your body move the direction you wanted it to to avoid them.
You tried to drink a cup of water from a paper cup, only you couldn't tell how hard to squeeze it to hold onto it. So, you squeezed it too hard and the water spilled all over you. The next time you didn't squeeze it hard enough and it fell right through your hands and onto the floor.
Every time you tried to write with your pencil, it broke because you pushed too hard.
The different smells in a room can make you utterly nauseous.
You can't focus your eyes on any one thing because everything and everyone in the room catches your attention and your eyes just go there instead.
The lights are always so bright you have to squint. In fact, one dad said that his daughter's SPD was so severe that if sunlight touched her she would scream as if in pain.
Every time someone touches you, it feels like they are rubbing sandpaper on your skin.
The tag in the back of your shirt makes you feel as uncomfortable as you would if a spider was crawling on you and you couldn't get him off.
You wanted to write something down but it took you at least 5 seconds to form each letter. You can see the letter in your head, but your hand will not go in the right direction to write it.
Having constant motion sickness

Unfortunately there were no new methods of treatment waiting to be discovered by my eager eye, just the usual advice to seek the help of an occupational therapist. The thing is that we've being doing pretty extensive OT for almost exactly a year now and, to be honest, just finding our way back to our original starting block a year ago would be an improvement right now. I have to confess though that about a week or so ago I got so fed up with our, seemingly useless, sensory brushing that I half convinced myself (okay...maybe a little bit more than half) that the sensory brushing was perhaps doing more damage than good. I even found myself trying to replay those first few instructive OT sessions over in my head in case I'd perhaps, in the interim, managed to completely hash the whole process up and was now making Sam more defensive by incorrectly brushing him. I had two fairly convincing reasons encouraging my wayward thinking though with the first being a rather embarrasing situation at Meghan's school one afternoon when I decided to take Sam out of his carseat to sit upfront with me while we waited the half hour until the school bell rang. I agonised over the decision a good few minutes knowing that trying to sit Sam on your lap in a car lately is usually taboo (which isn't all bad because it acts as a built-in safety mechanism ensuring that he is always in his carseat) but was pretty confident that if I moved slowly and carefully enough he would be okay. So, in clear view of all the other cars parked at the school (largely due to the overly cautious and timeous moms the first week of school usually brings with it) I lifted Sam from his carseat in the back and tried to get back into the car on the driver's side. It is at times like this when referring to sensory defensivenes seems so much less appropriate than simply calling it blind fear. Sam clung onto my neck and hair and ears and any other part of me he could claw onto as if the dashboard and steering wheel had suddenly grown a giant set of gorging, hideous jaws and were trying to devour him alive. I persisted for about five minutes but by then Sam had not eased up so I decided to rather put him back into his carseat...noting rather anxiously that the carpark had filled up even more.

What do you think the chances were that Sam was going to be placed calmly back into his carseat? All I did was make a slight movement towards the open car door and off Sam went, into his sensory bermuda triangle where all things rational seem to disappear. I made a few more desperate attempts to lower Sam in but he just became more and more distressed. And there I stood. I resigned myself to the fact that I would have to wait a good twenty minutes out in the sun until Meg finally came out and then would have her get into the back of the car first and try from there to cajole Sam into his seat, which has actually worked before. My last attempt at trying to end the very entertaining show I was providing for the other parents, was to put on Sam's little portable dvd player which, thankfully, had a Barney Sing 'n Dance dvd in and, after having to dance outside the car for a couple of minutes first, tried to "dance" Sam into his carseat. There proved to be some logistical obstacles...but low and behold, it eventually worked (with a total of about four minutes remaining before the school bell went anyway). And yes, I have resumed Sam's (be it correct or not) brushing.

As if that wasn't unsettling enough, exactly five nights ago Samuel started freezing up when I tried to put him into the bath. Washing his hair in the bath has always been a bit of a challenge, more specifically the motion of lying him down in the bath and then, which seems to be the most distressing for him, sitting him back up again. While hair washing has always been carried out with a degree of resistance from Sam, his love for bathing and being in water always seems to prevail. Or rather, used to. Try as I might, I could not get Sam to sit in the bath on Sunday night. He clung to me as if I was trying to hurl him over the edge of an unimaginably steep cliff. After several minutes I gave in the towel (figuratively speaking) and just sponged Sam down while Chris held him over the bath of water. And, with the exception of one evening when we tried almost wrestling Sam into the bath but then had to take him out just seconds after as he was so upset, that's how we've had to bath him every night since. It is such a shame having to give up Sam's bath time...that was our little reassurance at the end of each day as Sam played carefree with his foam numbers (to the sound of the constantly running tap, of course) that, no matter how trying the previous 24hours had been, we got to give it another go the next day. Who would have imagined a simple bath could mean so much? (I seriously have to get out more).

I am so completely lost and out of my depth with this sensory thing. It is killing me emotionally watching him spasm in pure fear at doing things which the rest of us do without a second's consideration. I FB'd our little RTS group recently and asked advice from the other moms and Sam is certainly not unique with his SPD. Patience seems to be the key. Evidently that set of keys has also been lost in a Bermuda Triangle somewhere.

Grumpy Smurf

2012-01-25T17:48:00.000+02:00

By Saturday afternoon, Sam seemed to be feeling quite noticeably better. His eating and sleeping hadn't quite returned to normal (whatever that may be) but he seemed a little less fussy and thoroughly enjoyed his first swim of the year. We made sure to keep his shades on all the time, with great difficulty of course, because the Atropine (used to dilate his pupils in anticipation of the glaucoma examination) has still not completely worn off. It's really quite odd and the first time it's happened, but each eye seems to be returning to normal at it's own pace. The right eye's pupil is pretty normal, while the left still seems to be quite dilated. It's really quite freaky to look at.

Ooohhh...that little tongue, which is seldom actually inside Sam's mouth.

Err.....define "kiddies"pool again, Dad!

Sam gloating after I tried to take him out but quickly returned him to his little turtley-pool after he screamed blue murder! Cheeky smurf :)

I honestly have no clue what Meghan was doing here, not sure she has either. She did mumble something about a somersault at the time. A somersault? Boy, things really have changed....in the good ol' days a somersault looked more like a turning-head-over-heels movement than a.....??? Well, what she's doing..LOL

By Sunday Sam was eating as per (his) normal again and had a really good night's sleep as well, with me only having to get up about five times as opposed to the usual twenty-something...and it was mostly to reposition him after he somehow managed to land up with his legs and bottom perched on the wedge in his cot and his head at the bottom. Definitely not the most reflux-friendly sleeping position. Monday morning started super-positive that Sam is definitely on the mend which obviously means that next Friday's surgery date is sure to be achievable. And it just got better...on Monday afternoon Sam slept for a whopping THREE HOURS! He ate every bowl of food (all 150mls of it) without any resistance and on Monday night blessed us with another trouble-free night and again astonished me with a two hour and thirty-eight minute nap on Tuesday afternoon. I was almost excited about Sam going down last night, already making plans for what all I intended to do with today's almost guaranteed two hour freetime while Sam napped. (Err...by plans I mean things like do the washing, update Sam's blog, etc). I just HAD to jinx it.

I don't remember Sam being still or anything remotely peaceful for more than about half an hour last night. He tossed and turned and whinged and whined as much as always and then woke up with a cough that is sounding dismally croup-like. And this morning's "free time"? Lasted a total of 17 minutes! It seriously just had to happen. I usually leave home at about 1:40pm to collect Meg from school so on Monday when by that time Sam was still sleeping and we were still reveling in his gorgeously long nap, Brampies went off to fetch Meg for me. Yesterday was also a little tense, waiting to see if he would wake-up on time for me to leave...which of course he did, with literally minutes to spare. Today I only had to fetch Meg at 4:30pm so his two/three hour long nap would have been absolutely no problem at all...had it actually happened, of course.

What are the chances that he can possibly pick up some other illness/germ within the next few days and again leave us no alternative but to re-schedule the orchidectomy?

Yet another postponement....

2012-01-19T22:01:00.001+02:00

I often wonder if parents of kids with special needs or those that are just poorly and need regular surgeries, ever sort of "get used" to sending their little ones off into theatre, feeling less and less anxious with each surgery and the recovery it brings with it. I know for sure that I am nowhere near reaching that point and feel as stressed and worried as if each surgery were Sam's first. It, of course, doesn't help much when you think there's going to be a surgery, then you think there won't, then it's back on and then, finally, it's definitely postponed...which is where we're at with the orchidectomy originally scheduled for 14 December then postponed till tomorrow and, as of today, now postponed till 3 February.

So, taking a temp hovering around around 37.6 - 38 ºC into consideration as well as the no eating or sleeping, apnoeaing more than usual and red ears, Doc S did not feel that putting Sam through the surgery and the risk of opening him up for further infection, was wise....and as disappointing as it is not to be getting rid of that little testicle just yet, I was quite relieved to hear Doc S's verdict. So, here's starting a whole new countdown till 3 Feb.

There was something quite amusing that happened while Doc S was drawing some blood a few days ago, which I forgot to blog about. First, some background :

When Matt Tooke and his family visited us a few weeks ago, either his mom or his dad mentioned that Matt had such a sensory aversion to a particular texture that it would physically make him gag. At the time I thought to myself that it was surprising that Sam, with all his sensory issues, had not yet reached this level of defensiveness. Barely a day later (it could actually have been the same day) Meg was playing with a toy pom-pom and when it touched Sam's arm, he gagged! A few days later, Meg was playing with a balloon and sent it Sam's way and when it touched his hand...he gagged. The little mischievous smurf, I thought, never misses an opportunity for attention so had to "steal" an idea from our conversation that day. Anyway, we became more and more aware of new textures which would cause an aversion-induced gagging, like when Sam's favourite foam number 5 got torn in two and I cellotaped it together, he gagged when he accidentally picked it up at the point where I'd put it back together.

Anyway, texture aversion was nowhere near my list of concerns when Doc S drew Sam's blood the other day. Of course our first and main worry was that when Doc S put the needle in, Sam would scream so much that he'd vomit...especially as finding Sam's veins always proves to be a lengthy and fairly traumatic event for Sam. But, quite remarkably really, Doc S found that little vein super quick and had drawn the necessary amount within barely more than a minute and although Sam did cry, it was nothing near as epic as what we'd anticipated. But then Doc S, unknowingly, did the unthinkable...he put a little plaster over the tiny puncture! And we were off....to vomit-city. Of course we didn't figure it out straight away, trying to catch bucketloads of puke does sort of distract you for a second. It was only when Sam managed to dislodge the plaster and then proceeded to gag some more that Chris figured it out, but by that time Sam had already emptied the entire contents of his stomach (which seemed surprisingly full) all over the pathologists' office'. Never a dull moment with our Sam...or even remotely ordinary for that matter.

Confucius says.....

2012-01-17T14:53:00.001+02:00

....he who is confused by good news needs swift quick up the bum!

Okay, Confucius didn't really say that but he darn well SHOULD have!

I spent the whole of yesterday with my cellphone almost literally attached to me, waiting anxiously for Doc S to phone in the blood tests which, after a few difficult days with Sam and a couple of funky urine analysis' on Sunday, we were almost certain would confirm that Sam has Hepatitis A. Although I couldn't for the life of me imagine how Sam might actually have caught Hepatitis as we don't generally serve poo sandwiches at Cafe de Beer and having to postpone Friday's surgery would have been nothing short of devastating, it was also a sort of relief knowing what has been causing Sam's generally being "unwell' lately - it's now been five days since he ate properly and almost just as many nights without proper sleep. So when Doc S did phone this morning (after apparently having already sent me an sms yesterday - which sms was more than likely deleted by a certain finger happy smurf while watching video's on my phone) and said that Sam in fact does NOT have Hepatitis, I had a rather lengthy ''Huh?" moment which must have left him wondering what the heck kind of mother am I that sounds more disappointed than relieved that her child is not sick. I had just really expected the tests to come back pointing to Hepatitis so it took a moment for the news to sink in.

So, of course, it means we are all good to go for Friday's surgery. Sam will still see Doc S for his usual pre-op examination on Thursday, especially as Doc S thinks the funky-urine-analysis gremlin might be because of a viral infection but if all goes well, God willing, Sam will be minus one seriously disruptive little testicle by this time on Friday.

Haven of Hope

2012-01-11T11:54:00.001+02:00

Okay, here we go...blog post attempt no.4!

The blogging powers-that-be seem to have concocted a conspiratorial plan to prevent me from blogging...those "powers-that-be" being our new internet service provider and my little Acer notebook. The notebook and the new modem together are about as fast as a snail on a heavy dose of Prozac...hence the almost 30 mins it can take to download just one picture, when u plug the modem into the pc the pc crashes for some reason so that's not an option and when I finally out-patienced the notebook and shuffled through a painfully long blog post...it threw a saving error at me and the whole post was gone.

Moving swiftly along (MY swiftly that is, not the Acer's)...it was back to school here in Cape Town this morning, amongst the normal chaos that goes with the first week of school. Meg and her little clique sat waiting anxiously for their names to be called out to see whose class they'd been placed in (with their sights set on one teacher in particular) and, perhaps more importantly, to see whether their group would be split up. Well, the teacher concerned, Mr V, is obviously extremely popular so the whole process had the same kind of vibe to it as a live episode of Idols or X Factor. All the other classes were called first leaving just one group and one teacher behind, Mr V, and although you could see the almost-there look of relief on our kiddies faces there was still that anxiousness of waiting to hear their names called out one-by-one just as confirmation that there was in fact no mistake and they were all in his class. But Mr V kindly set their minds at ease and announced that all those left behind were in his class.....the group erupted into cheer. So Meg is super thrilled to have not only all her friends with her again this year, but to have such an awesome teacher too.

The school holidays have whizzed by relatively quietly and uneventful. We were desperate to at least do something with the girls before the school year began and, after contemplating various outdoor activities which would have been loads of fun for Meg and Chrisna but not so much for Sam, we settled on a trip to the Aquarium last week. Once we'd recovered from the initial shock of having paid the entrance fee (a great big OUCH! and, from an adult's point of view, nowhere near justified as far as the experience being worth the money goes), the girls did seem to enjoy themselves. Sam tolerated the outing more than enjoyed it and was not too impressed with the great big tanks, high noise-levels and general overcrowdedness of the place. Still, now at least we know. We had to walk through a craft market to get to the entrance and there was a stall selling African drums, with some drumming demonstrations and Sam really loved that. It was the most entertaining part of the trip for him.

Then, as my FB friends know, last Thursday we were invited to visit the Haven of Hope Equine Centre on Kaapzicht wine farm, just minutes away from us. Haven of Hope is an awesome ministery born of the love and passion of two stunning ladies, Juanita and Maryke, for both horses and children with special needs. Sam was delicately introduced to the horses and ponies benefiting from Juanita's and Maryke's care and dedication, with a special focus on him getting to know Strawberry, the little pony in the picture upon whom Sam will begin his hippotherapy.

Thembi and Jabu, two beautiful spirits with a heart-breaking history

Jabu kind of stole the show for me, he has the gentlest most enchanting aura...haunts you for days

Haven of Hope relies solely on donations to keep their establishment going. If memory serves, there are five horses and three ponies and that's quite a number of horsey mouths to feed and take care of. All riding sessions for special needs kids are FREE! and almost all the physical work on the farm has been carried out by these two ladies. Donations or even secondhand building materials are greatly appreciated. HOH's banking details are : Acc Name : J Lourens, Bank : FNB, Branch : Bellville Civic Centre (Code 200910), Acc number : 62013287348 (Current account), Ref : HOH. If you would like to contact Juanita or Maryke, kindly send me a mail.

Smurfy News : We are eagerly counting down the days till Sam's surgery on the 20th. I am a little anxious that Sam might come down with something by then, preventing the surgery but pray wholeheartedly that this won't happen. We've had our usual tango with our medical aid provider who, although this will be the fourth such procedure, are refusing to authorise payment of Sam's glaucoma examination from our hospital plan. Their reason for this is that the procedure code falls under the category of procedures carried out in the specialist's consulting rooms! Mmmmm...okay! And if the patient is a special needs little kid who would not quite understand having to sit quietly in a doctor's chair while having his eyeball probed? And the reason why this procedure was authorised in the past? Well, the explanations I got was then that they will pay for the procedure, but without issueing an authorisation number and not from our hospital plan but from our day-to-day benefits (Okay! And so then how are YOU paying for it?). I was also told that the procedure should never have been authorised before but was due to the incompetency of this consultant's colleague and that if I wished to take the matter further with this consultant's team leader, I could but at the risk that they might then just decide to deduct the cost of the previous procedures over the last two years, from our savings account NOW! Threaten much? The best part was finding out the description of the procedure code Discovery are refusing to authorise out of our hospital plan benefits : "Examination under general anaesthetic" Know many doctors who do examinations under anaesthetic in their consulting rooms???

So our choices are to either not go ahead with the glaucoma examination for now, but without knowing when next Sam will be under anaesthetic giving us an opportunity to do it at a later stage or to just foot the bill and not take any chances. Obviously we're going with Option 2.

Hold thumbs guys as I click the 'Publish Post" button....

2011 has left the building....

2012-01-02T00:11:00.001+02:00

...and I'd not be entirely honest if I said I was sad to see the back of it. But, nevertheless, 2011 did see Sam learn to crawl, make at least something remotely resembling an attempt at signing and of course there were the many blessings we received recently which blessings kept on growing when we received yet another gift from Lancewood cheese on the 22nd of a huge cheese hamper complete with daunting cheese-cutting set and a lovely, squidgey teddy bear for Sam. It was precious finally meeting John and his colleague, Sarah, in person both of whom are filled with caring and compassion for others...you can just see FEEL it.

We had, as usual, a fairly quiet festive season with an early Christmas Eve visit to Sam's Granny and Great-Aunty Al and then a small, but enjoyable gathering for Christmas Day lunch with Aunty Cammy and Uncle D and the rest of us here in Smurfville. A few days before Christmas I was still a bit sceptical about whether Sam was actually going to avoid a hospital stay on Christmas Day as, as usual, it has taken him quite some time to get over the last viral infection and croup. Thankfully there was no hospital stay on the cards although Chris did land up doing most of the Christmas shopping on his own (not sure he saw this as a negative though as he does so love shopping - seriously!).

New Year's Eve was remarkably uneventful, with the exception of Sam eating about five mouthfuls of un-pureed "normal" macaroni and cheese with only a couple of gags, but still managing to swallow. Just before Sam's last surgery, he had started tolerating more textures so it was good to see, albeit tiny, a glimpse that perhaps it might be something we can start working towards again. Although, having said that, the fact that we are only 19 days away from Sam's next surgery - without him having found his way back to his "good place" yet from the previous one - I am not so sure that any kind of progress is something we should anticipate for now. Sam's sensory issues (or rather "fears" which seems much more accurate) seem to fluctuate erratically from day-to-day. For about 3 days last week I could not get him to sit in his high chair, the second I started moving towards the chair at mealtimes he would clench his little hands to his chest in his usual panic-stricken pose and that was about as far as we got. And then, just as suddenly and un-explained as this new fear appeared, so it vanished and we are back to doing mealtimes in the feeding chair. Bathing, getting into and out of the car and putting Sam into a crawling or sitting position on the floor remain still extremely challenging. I have never looked more forward to a surgery than the upcoming one to remove Sam's right testicle, especially after Dr B shared my concerns that a great deal of Sam's sensory issues could be related to pain or discomfort in the area where the testicle is tethered to a blood vessel. There are so many unanswered question riding on the outcome of this surgery so I can only pray that, despite the initial pain and trauma, we will be well on the way to recovery, from a sensory point of view.

Floating restlessly at the back of my mind is the completely irrational and whacky notion that there is something going on with Sam's spinal cord. I think that perhaps the fear originated from Sam's first sensory lapse in January 2011 taking place after his spinal cord surgery but not in any way eased by the fact that, where as Sam's urinary flow was strong and "healthy" for quite some time, I have seen too many weak, dribble-like wee's over the past couple of weeks. We also went through a period shortly before the TSC surgery where Sam seemed almost unable to straighten his legs completely and when we walked with him, would move his legs in a strange puppet-like motion...and although not quite as severe, Sam seems to be doing this again. Granted, he is not doing much walking at all lately so this could probably be more related to stiff, un-exercised muscles. Again, logic tells me there is no way the TSC is playing a part in Sam's issues right now...but what is logic anyway? Nothing more than a skill one acquires through endless rounds of chess-playing and galaxy-searching. Mmmm....no, I think I'm getting confused with my Sims now.

And from one countdown to another...there are only 70 days left until the Argus Cycle Tour! How scary is that? Okay, perhaps not for you...but for me it's horrifying. After we first registered to ride I looked up a Fittrack program which helps you train for the 110km race in just twelve weeks. I thought, "Cool! Still like 5 months to go, so I'll go back to the program in a couple of months time!" Well, I finally registered this morning to begin the twelve-week training program, TODAY...being ten weeks away from the race. So, even though the program is called the Survival Plan (which means you're main aim is purely to just complete the 110km's in 7 hours)...I am not too sure I'll be doing much surviving on that day. I think I will be pretty gobsmacked if I actually manage to complete the race. Whose completely absurd idea was it in the first place to attempt this? Oh ja, it was mine! (grins sheepishly)

Sometime in the upcoming week, Sam is going to be slowly and gently intoduced to some riding-therapy. I am so excited (okay...and a little scared, for me that is). An ex-colleague and friend started an awesome mission a while ago, together with a friend, to rehabilitate and take care of a number of horses, who had previously suffered abuse, neglect, etc. and now Haven of Hope shares the therapeutic benefit of horses with several special needs children. Something wonderful to look forward to, I am sure.

In closing, three very brief pics from Christmas Day (my pc is on the blink and it took 45 minutes to download just these 3 pics...3 out of the 20-something pics I originally planned on posting).

Sam has really taken to tearing up pieces of paper...magazine...photo's, so we thought that this would be his first "real" Christmas gift-opening experience, but he was more interested in what the girls were doing.

Probably Sam's most stunning gift - a portable dvd player for the car - from his Oupa Joe. For those that don't know, Sam is so not a car-travelling person and even short, ten minute trips to and from the school or shop usually results in crying and whinging so here's hoping this pressie is going to lighten the travelling load up a bit!

Oupa Joe's pressie for Megs was a beanbag chair, which she has been wanting forever, but which Sam and Brampies seem to have taken over (although Sam does seem far more comfy than his Bramps).

Every now and again, I take a quick peak at my previous journals just to kind of "compare" where I was emotionally and spiritually at that time, compared to the present. I think I've mentioned this before, but in case not - I had a "feeling" almost right from the beginning of my pregnancy that this baby was different...different to Meghan, to Luke...to every child we know. I confessed many times to God that I felt that I was being greedy by wanting a third, healthy and "normal" child but begged him nevertheless to look upon my pleas with favour. This morning I looked at what I had written on 1 January 2009 :

"In this world you will have trouble, but take heart! I have overcome the world!" John 16:33

So strange that I read this verse today. It was in a Karen Kingsbury book that I read yesterday."

It is so true...I think about what worries I have at the moment - the health and development of the baby growing in me, the health and wellbeing of my children. And yet the Lord has never forsaken me, so why do I worry so?

Then I watch programmes about small babies of just 9 months with cancer and braving chemotherapy and surgeries, Lord, and then I am aware of how extremely blessed I am and how you have always worked in our lives and I am humbled, Lord. I thank you...for every blessing and miracle I have in my life. I have to learn to pray as though I believe I will receive. I pray Lord, that you will bless our baby. That he/she will develop as perfectly as what Meghan and Luke did, with your Grace Lord and by Your hands."

And, as I've taken to doing, I close the journal, reprimanding myself for taking the silly thing out in the first place because all I walk away with is the fear that I did not pray as though I believed I would receive....or believe I will.

Elvis has entered the building....and the family!

2011-12-19T21:46:00.001+02:00

Nah! Just kidding!

So Pasty Smurf seems to be, albeit slowly, on the mend. He is still coughing and late this afternoon his cough was sounding very croup-like again. But thank goodness we have had no v-wording for two solid days now (and, No, I am not sending that out into the Universe as an invitation). I am so disappointed that, with all the chaos at last week's paed appointment when Dr B weighed Sam, I didn't even ask what his weight is now. I do remember that his height is now 84cm which is not too shabby at all because that's like a 3cm growth in about four/five months. Also, after showing Dr B how severely Sam's sensory defensiveness is at the moment, Dr B did a delicate examination of where he thinks Sam's right teste is sitting and, although not 100% sure but pretty darn close, he thought he located it sitting much further out of Sam's groin area than we anticipated - almost kind of under Sam's hip bone. Anyway, Dr B is quite convinced that that little teste could definitely be causing Sam some discomfort, at best, if not pain with certain movements and positions. So, boy are we counting down anxiously until the 20th January to, hopefully, see the removal of the teste having a profound effect on Sam's SID.

On Sunday afternoon Sam seemed to be feeling a little better so we ventured out into the big, wide world...or more specifically down to Aunty Cammy's to meet the new addition to hers and Uncle D's family. So folks, meet Elvis....

...who loved playing with Sam's stacking rings almost as much as Sam does,

and had Sam beside himself with excitement.

Between Sam and Elvis, they kept Uncle D busy fishing the stacking rings out from under the couch.

Random pic of Sam and Dad

And please do note Dad's snazzy new haircut...cut and styled by moi! I'm thinking of opening my own little hair salon, Salon de Smurf...just as long as all the customers are only wanting military-style do's. Although I'm quite sure I could manage quite well with an emo-style cut (not even sure if there's even any cutting involved there) and have extensive experience with the haircutting of squirmey-wormey-type little people. I've asked Meg several times if I can't experiment a little on her hair too, but would you believe she's just simply refusing. Tsk Tsk.

Pasty Smurf

2011-12-17T23:39:00.002+02:00

We are on Day 4 of Sam’s virus-croup-combo, but it feels more like Day 40. Sam is kind of on a vomit/fever/coughing roller coaster. He goes through stages when it appears as though he might be on the mend, but then next minute he’s losing his breath, hitting the 38 temps and vomiting again. It’s just a LITTLE frustrating! The roller coaster did kind of end on a “high” tonight with Sam going down with much less drama than the past few evenings so let’s hope it’s a good sign. I have heard that there is quite a potent virus doing the rounds in Cape Town which has so badly affected children as old as fourteen, that they’ve had to be hospitalized. Doesn’t really set the tone for a great festive season having your child in hospital, so here’s hoping the virus makes itself scarce!

At Sam’s doc appointment on 1 December he worked himself up into such a state when the doc examined him that he landed up vomiting all over both him and I (Sam, that is, not the doc – although he too was starting to look a little green towards the end of the consult). So I decided to go prepared at Wednesday’s appointment with Sam’s paed, even though “going complete” meant having to lug along two separate bags : both Sam’s normal “baby” bag (which is already jam-packed) and then a “pull-in-case-of-emergency” bag consisting of a great big towel (which has proven excellent at vomit catching) and a complete change of clothes. And thank goodness I did. The actual examination was remarkably uneventful, with Sam almost falling asleep at one point. At the end of the consult, I had just finished telling Dr B about how badly Sam has regressed with regards to his sensory issues, when he decided to weigh Sam (completely unawares, of course, of how bad it really is at the moment)…which involved Sam sitting on the baby scale…which (with sitting anywhere being a serious No-No at the moment) then involved Sam freaking out and vomiting everywhere!

Dr B opted to send us home anyway, with strict instructions to get Sam keeping some fluids in by the end of the day or, failing which, a hospital stay and IV were inevitable. I pointed out that Sam’s original surgery date had been Dec 14th and that he was probably determined to stick to the original plan of being in hospital then (he doesn’t take well to change, our Sam) so Dr B suggested I make a detour through the paediatric ward on the way out just to satisfy Sam’s need to be in hospital! I was like, “Errr….let me think about that one….of course not!!”

A rather pasty, bleak little smurf :(

Well, we are eight sleeps away from Christmas Day and we have still not done a scrap of Christmas shopping…although having a vomiting smurf accompany us could prove invaluable in lengthy queues! If he doesn’t improve quite drastically over the next couple of days though, I’m afraid all of our pressies are going to be in the form of a stack of I.O.U.’s….imagine?

Adrian

2011-12-14T22:47:00.002+02:00

Yesterday morning, we took a little drive, to go wish a friend (well actually Sam's friend, Adrian) Merry Christmas.

This is Adrian :

Adrian sells newspapers at an extremely busy intersection en route home from dropping Meghan at school and every schoolday morning, without fail, the second our car stops Adrian rushes up to the window and spends the next two to three light changes entertaining Sam by dancing, signing, clapping hands...you name it, he does it...as long as it gets a smile and some handclapping out of Sam. I can count on my one hand the number of days Adrian has not been at work, he's there whether its blazing hot or pouring with rain...and it's about the only part of our car journey during which Samuel does not moan and cry. Over the weekend we received a truly precious gift from a certain Knight and his Princess with an ever more precious message. Seeing as we seem to have been the object of many generous gestures lately, we wished to share our blessings with someone who is always smiling and friendly and keen to make others happy, so we went to share our gift with Adrian and thank him for the cherished contribution he makes to Sam's life. We'd be quite devastated if we had to face that intersection without Adrian as I am sure several other motorists would feel as Adrian's antics usually draw smiles from others as well (although there are the occasional frowns and disapproving looks).

No more faking, Sam!

2011-12-02T12:35:00.001+02:00

We are still kind of swept up in the excitement and thankfulness of the blessings Sam received earlier this week. I say "blessingS" because not only did we receive the super generous sponsorship from Lancewood but a little later on Tuesday received yet another, equally generous, donation from an amazing family in their personal capacity, if not more appreciated because of that. Stan & Jodi - your compassion and delight in wanting to help Sam be the best Sam he can be, is awesome and truly inspiring. Our true thankfulness goes far beyond what any words can express. xxx

Our little conqueror smurf is completely oblivious to what amazing events have being taking place all around him this week, except maybe as to why Mom was bawling all the way to OT after receiving a certain phone call. But who can blame him as, after a particularly fussy night on Tuesday ("fussy" meaning that instead of thrashing and rolling around every 20-30 minutes, he was thrashing and rolling around every 2-3 minutes) and a sudden refusal to drink or eat on Wednesday afternoon, our GP confirmed yesterday morning that Sam yet again has a red, bulging ear drum. (I am NOT even going to go there!) So, he's on a five day course of Orelox, which of course tastes simply smashing, until his ENT appointment on Tuesday, which ENT appoinment will undoubtedly lead to grommets...soon! My initial "plan" was to try and stretch the grommets procedure until the 14th December, for which his surgery to take care of that little right testicle was originally scheduled, in order to avoid two anaesthetics so close together. But there goes that plan out the window with the testicle surgery now been moved to Jan. Now we're still facing two anaesthetics so close to each other. *sigh*

Perhaps Sam HAS picked up on all the good things happening around him, as he has certainly become more verbal lately...as if to say "See, I'm doing my part too!". At last week's speech session, Sam thoroughly enjoyed some mirror-time, so I found a loose mirror we had lying around (Uhhmmm...if swiping it out of Meghan's room could be considered loose) and have placed it in Sam's little play area and he spends ages on his knees in front of it doing all sorts of things like different assortments of hand-clapping, some drumsticking on it (there just had to be tapping/knocking somewhere) and even some self-awareness exploration like touching his own face, then his head, then his knees...he even pulled his own hair yesterday! (Told you those little fingers have a mind of their own). It's probably been one of the most worthwhile additions to his toy collection - who woulda figured?

We've yet to receive any news from SARS as to whether they do indeed agree that RTS is an actual disability, making me wonder if perhaps they've decided otherwise. In light of this I wondered to myself if perhaps we are not the ignorant party, so sat Sam down last night and decided it was time to get down to the crux of the matter. I said, "Sam, apparently SARS is under the impression that you are faking a disability. So, scadaddle your little rear-end off this bed, march down the passage to go ask your dad to make you a sarmie while I quickly get rid of all the accessories, meds, books and other tools we've accumulated in lieu of your supposed special needs."

Anyway, I've gotta run...we're off to SARS quickly! I'm going to ask them to take a quick look in Sam's ears for me...what with them being such profound medical experts I am sure they can tell me whether there's any improvement!

In closing, some pics!

Sam refining his DJ skills...for whatever reason, he loves spinning the discs around in their covers!

(No, we don't expect these cd's to be readable for much longer!)

Having a chat to Dad!

Sam bringing new meaning to the term "parallel play"

From mincemeat to unexpected blessings!

2011-11-29T11:21:00.000+02:00

Recently a very good friend shared that she was feeling spiritually "battle weary", something I too have felt recently. I was a little taken aback...this friend is the essence of all that is good and righteous, filled with endless patience, compassion and love. I thought to myself, if this friend is battle weary then I must be spiritual mincemeat! Although we face the usual challenges most special needs families encounter, these challenges have not alone contributed to my weariness. There have been countless reports of abuse and assault of chilren and special needs people over the past couple of weeks which have made me question whether putting Samuel into any special needs facility at any point is even something to consider anymore, at least while he is non-communicative (which I am sure he will be for some time). There was the devastating story about baby Michael Connor who, although born normal, was rendered blind, brain-damaged and a quadriplegic...a state into which his mother beat him over a period of months, from the age of three months, and for which neither her nor his father are receiving anything remotely resembling a just punishment. When a reporter followed the mother leaving the sentencing hearing to her car, she retorted, in a hostile manner, "Get a life!"

My heart sank. I vented to the heavens, I vented to my poor old dad (who was, up until this point, embracing his new-found spiritual curiosity)...where is the Lord's presence? I argued with Him that He is going to lose this world before any rapture or the coming of any Kingdom. With me leaving very little room for anyone else to have a say, I have to confess that it was very much a one-sided argument...or so I thought :)

Yesterday morning I received a phone call from our local radio station, Kfm asking me to hold on for a call, after which the DJ, Ryan, and my sister, Cammy, both came on the line. After an extremely emotional introduction to our story by Ryan, followed by an equally emotional contribution from Cammy, Kfm added another caller to the conversation. John van der Westhuizen from Lancewood Cheese shared with us that Lancewood was going to sponsor basically all of Sam's speech and physio therapy for the next year! My first thought was - my conversation with Him had not been so one-sided after all! Okay, honestly, that might have been my second thought....my first thought was OH MY WORD! WHY AM I SOUNDING LIKE SUCH A NINNY OVER THE RADIO!

What an awesome ending to a year I have been otherwise longing to see the back of! I don't think the problem is that the Lord's presence decreases, but rather that we really do become THAT battle weary that we no longer have the same amount of strength and passion to search as carefully and notice as clearly when we do come across it. As I read recently (and have possibly posted before) it is not the Lord that leaves us, but us that leaves the Lord!

So the sponsorship from Lancewood is awesome, it will certainly ease our financial burden over the next year and how wonderful that there are still such giving people and organisations out there. But even more awesome is the realisation that firstly, my sister thinks so highly of the kind of mother I am to Sam, Meg and Luke and secondly, how much both Cammy and everyone else in my family (especially my Aunty Anthea who too sent a similar request) want to help us and see us rise. And, when they personally don't have the resources to help, they will do what it takes to make this journey so much easier.

The Lady of the Hour...Sam's Aunty Cammy

Two things in closing :

1. Please don't forget about the plight of the Harcombe family

2. I discovered a new "worst place to v-word" nominee...so the Mugg&Bean, Ackermans and the car all move over to make way for....into a basket full of newly washed laundry!

"Special" Connections

2011-11-23T12:23:00.000+02:00

Earlier on this week a friend and ex-colleague and I connected up on Facebook. I glanced briefly at our "mutual friends" expecting to see only people we had both worked with several years ago. Surprise is not an adequate-enough word to explain my reaction at seeing a completely unexpected friend, Lloyd Tooke, daddy to Sam's RTS brother Matt Tooke . Those of you familiar with our RTS community will know there are not many people around who can say they know an RTS family, let alone one single person being able to boast at knowing not just one, but two RTS families...purely out of randomness, without having met the one through the other. Awesome! After a super brief catch-up we discovered yet another "special" connection, Alan and his wife, Carien, have a very special angel of their own...Catherine Jamie Harcombe. Jamie, as she is known, has Down's Syndrome and at the tender young age of just four months has already endured a major heart operation as well as another surgery just days later to remedy the build-up of fluid surrounding the heart, which surgeries has left her mom and dad with an almost impossibly outrageous medical bill, for which they are receiving no assistance from their medical insurers. Please go have a look at Jamie's webpage to read more about the Harcombe's plight...and go ahead, make a donation....I dare ya!

Life here in Smurfville continues much as it has over the past few weeks...we are in the middle of Meghan's final exams for which the studying, I had thought, was going to go pretty amicably. But alas, even though she was super-enthusiastic about studying for all the revision tests for which she got mostly fullmarks or just one or two incorrect answers, the studying for the actual exams is proving (for some odd reason) to be so much more troublesome for Meg. As I sit typing this, it is pouring with rain outside as Spring battles to uphold a permanent presence here in Cape Town although I am pretty certain that in just a month or two's time I will be complaining about the Summer heat.

As for our Sam, he is still protesting solidly against his physio sessions and, quite often now, his occupational therapy sessions as well. Speech therapy is going remarkably well, mostly due to Tanya's quick-as-a-flash movements when she "sneaks" a subtle speech prompt in while Sam plays. I haven't quite got the hang of it yet and first try and maneauver Sam into an easily-receptive position, then have to co-ordinate my fingers into the required position and then slowly "go in" for the actual contact on Sam's face...by which time Sam has seen me coming from a mile. Luckily though Sam's defensiveness is much less-guarded with me so even though I sometimes have to repeat the prompt once or twice before I get it right, he's actually quite tolerant. Sam's eating habits stay pretty much unchanged, we're still predominantly on Stage 2 baby food. Sam has seemed to warm up to his slightly-distorted notion that whatever is on our plate is guaranteed to be tastier than what is in his bowl. The amusing part is that often we are eating the same thing! His sleeping is still as disruptive as always and Chris is almost convinced by now that Sam has restless leg syndrome as he tosses, turns and thrashes around literally the whole night. I am not convinced that it is not some kind of spin-off of something that is happening with that right testicle. Either way, I can count on one hand the number of nights over the past few months that Sam has slept through without me having to get up sometimes as regularly as every 20 minutes to re-settle him...but I've blogged about this before, so let's just leave it at that ;)

Chris and I are battling to decide on a Christmas pressie for Sam, who is unable to provide us with a detailed, in-order-of-wanted value list, approximately four month's in advance...as Meghan has done. We've considered buying him a walker, but he frightens even when walking with one of us holding his torso, which is a great deal more secure than a walker - so the walker is out. He already has several educational, noise-making toys of which most can hold his attention for a maximum of about two minutes. Ride-on's are definitely out as the one we bought him for his birthday is only good for being pushed by a crawling Sam, he refuses to actually sit on it let alone ride on it. The chances are by the time he's conquered his sensory issues enough to actually enjoy such a toy, his little legs will be too long for it anyway. We'll have to put a great deal more thought into this one, without forgetting that Christmas presents this year are largely going to depend on our ever-so-giving South African Revenue Services who recently advised us that we have to pay in an amount of R15,000.00 for incorrectly claiming medical costs for a child with disabilities.

But there is awesome news, folks! According to SARS and contrary to the belief and advices of many specialists and doctors who have obviously wasted their hard-earned degress (nevermind the living proof of actual RTS patients) - Rubinstein-Taybi Syndrome is NOT permanent. Yes, you read correct...in approximately five years Samuel is going to be cured and will be a "normal" boy because, according to SARS, RTS is not a permanent disability. How amazing is that? In five years time Sam is going to walk and talk and be potty trained and eat normal food and have magically-straightened thumbs and feet, no red mark on his forehead....none of that at all (mmm...wonder if those tiny little indentations/holes behind the back of his ears will also disappear). Well, with news like this, who needs Christmas presents, right! Let's hear a Whoop! Whoop! for SARS.

On that slightly-disturbing note.....a random pic of a smurf wearing a smurf!

A surgery-free Xmas!

2011-11-17T23:35:00.000+02:00

The big news for now is that Sam's surgery, tentatively scheduled for the 14th December, has been postponed until early-January. I say "big" news as opposed to "good" news because I am not entirely sure how I feel about the change of plan...it's really kind of bitter-sweet. I have to be honest and say that I've had an incredibly uneasy feeling about the upcoming surgery. Possibly because, as mentioned previously, it was scheduled to take place the day before year-end shutdown, not made any easier by the struggle to secure an anaesthetist we are 100% comfortable with but certainly also effected by the unexpectedly traumatic experience Sam's little RTS brother, Jesus, recently endured which had our RTS family all round the world glued to FB for a number of days, eagerly awaiting updates which would report that this little angel boy was finally out-of-the-woods and recovering.

That said, we were all looking forward to finally putting the whole testicle-in-limbo saga behind us. It does sound sort of amusing when I put it like that, but it has been somewhat of a challenging and trying episode. On the other hand, we cannot deny the relief of actually being able to make some sort of plans for Christmas this year as opposed to last year when Sam's TSC surgery took place on the 20th December. But on the other hand.........Yip, I'm still pretty unsure about how I feel about the change of plan...maybe if I blog a little longer, it'll become a little clearer.

And a catch-up via pics of what we've been up to over the past week......

We've put together a little "feely" bag for Sam seeing as he seemed to be showing a little less defensiveness in his hands. It has been invaluable having Meg participate in this because watching her have fun with things which Sam would normally shrink away from having contact with, has made it a little easier....

...although having these little balloons (normally an aboluste no-no for Sam) statically fixed to your hair is not really quite the same as having to touch them with your hands....

...but it still made for some fun play.

Meg had the genius idea of putting some of Sam's plastic numbers into the bean container and Sam was quite comfortable fishing them out.

Attentively listening to his big sister's instructions :)

The hand splint which Sam is supposed to wear every night has definitely not been shown any less defensiveness. In fact, it seems to have gotten worse. I though the most annoying problem was that he somehow managed to wangle his little hand out of the three velcro straps. Now when you put the splint on him, he has taken to banging his hand into the side of the cot until you remove the splint. So I decided to show him, with the help of his little stuffed friend, that it's really quite okay for a little smurf to have to wear the nighttime splint!

But this is basically the closest we got to a smurf-tolerated splinting!

One thing's for sure...this little blue guy ain't gonna have any trouble with camptodactyly any time soon.

Samuel is obsessed with his sister...the second she is within reaching distance of Sam he makes a beeline for her. On the upside, he has absolutely mastered his pulling himself up skills and can go from a kneeling position into a standing position in a flash. On the oops-side, Sam's version of "play" at this point consists purely of hair-pulling, pinching and grinding his forehead into hers. Meghan is, for the most part, super-tolerant as she knows that if he knew of another way to play and interact with her, he would. Sam's OT, Pippa, has suggested an afternoon therapy session in the near future with both Meg and Sam so that she can show Meg how to react when Sam approaches, as well as to suggest some sensory-fulfilling "games" for them to share.

Mischievous little grin :)

Sam loves watching himself in the mirror.

A super-sleepy bathtime...which ironically always seems to give him a second wind...

...and just a random pic!

Poltergeist-style TV trouble

2011-11-09T12:36:00.000+02:00

We've been experiencing two separate kinds of problems with our tv recently, one technical and the other smurfical. The on/off button on our remote control for the tv has been giving some trouble. The button sort of sticks for a second or two after you've pressed it to switch the tv off, so if you're not careful a couple of seconds later the tv just goes on again on its own. Now we make a point of hanging around for a minute after putting the tv off in the evenings to make sure it's stayed off, because every now and again we would wake up to find the tv had been on right through the night. As Chris goes to bed much later than I do, I have often moaned at him on these mornings for not having noticed that the tv was still on (presuming of course that it was coming back on seconds after I've left the room) but each time he swears it was definitely off. A little freaky.

The smurfical issue is that a certain little boy has an obsession with pressing buttons. Sometimes it's almost as if his fingers have a mind of their own - he'll be kneeling in front of the tv watching something and that little pointer finger is just triggering away non-stop and then he occasionally gets frustrated because the channel changes in one of his favourite parts, but he's the one doing the changing! Apart from flicking through the AV buttons and constantly changing the volume, he's also changed the picture from colour to black and white and has even occasionally set the timer on the tv so that it goes off suddenly. Last night I made a point of hanging around for a good few minutes before going off to bed to make sure the tv was good and solid off but low and behold when I got up this morning it was on again. Of course I moaned at Chris and of course he insisted the tv was off when he went to bed. And then the light bulb, like the tv, went on and Chris said that it had to be Sam setting the on-timer for the tv, because if he can set it to go off he can most certainly set it to go on. A little later this morning Sam was doing his usual trigger-finger-exercises and as soon as I saw him hit the Menu button I, as I normally do, quickly grabbed the remote control to try and exit out of the menu before he could go any further and there it was : ON TIMER 00:06! (Obviously the longer I take to catch him, the later the tv goes on).

So apart from keeping us on our toes with mysterious appliance-behaviour, Sam is pretty much in the same place he was a week ago. The whole sensory vs pain/discomfort thing is still a bit baffling to me and, quite honestly, worrying. We've determined (as best we can) that there is no obvious reason for his, now, simply refusing to sit whether it be at home or more aggressively at PT. The thing that confuses me the most is that there does seem to be at least a slight improvement with the other vestibular sensory issues, like lying him back in the bath to wash his hair and even with Heidi being able to lie him down herself on the mat to do his stretches on Monday (last session I had to first lie him down for her and then she took over). So why would sitting then still be such an issue? I am still checking his urine often to make sure there's no bladder infection and really just don't know what other issues there could be that would only really become painful/uncomfortable when in a sitting position, other than the obvious misplaced testicle. I've even wondered if there isn't something going on in the area where his spinal cord was released, which of course has me imagining that I have seen a change in his bladder function again. But that was almost a whole year ago so surely it wouldn't take so long for any complications to surface? Well, I guess we'll know for certain within the next five weeks whether it could be because of the testicle and then we have an annual follow-up with APF in January/February to make sure everything else is still okay neurologically. Just have to sit it out I guess :)

Because Sam has been relatively healthy over the past few weeks (with the exception of the fluid in his left ear) we've managed to stick to our therapy schedule. Thankfully he has not yet developed any major aversion to speech therapy which I think is purely because his ST is really letting Sam set the pace and in doing so has him trusting her enough that she has even managed to attempt one or two light speech prompts on him in our last two sessions. So now when him and I are at home I try and squeeze one or two in myself when we are sitting quietly so that he becomes more used to the idea of having his face touched and when we sing songs like Incy Wincy Spider the "spider" first climbs up his cheeks before reaching the spout. Sam's definitely more comfortable with the whole exercise than what he was in the beginning. As mentioned some time ago, I've decided to give the signing another go and Sam is doing great with signing "more" now. So, the speech progress is relatively slow but it is progress nonetheless and at this point, although the need for being realistic is flashing constantly in my mind, I am borderline D.E.S.P.E.R.A.T.E. for some form of expressive communication from Sam.

The nighttime splinting of Sam's left hand to try and remedy the camptodactyly is just not going well. First Sam, albeit with much protesting, tolerated the splint. Then he figured out how to take the splint off (Do not ask me how - it has THREE straps), which meant I had to secure it a little tighter. Now he just bangs his hand violently against the side of the cot until you take it off. So we're not expecting a whole lot of improvement for those little fingers.

Meg's allergies/flu/reaction-to-paint-fumes or whatever it is that was actually ailing her seemed to improve towards the end of last week but not only does it seem to be worsening again, I too now seem to be coming down with something and Sam has also been coughing a little - not the greatest timing. As the weeks spiral towards the normal year-end rituals we have final exams for Meg starting next week, a visit from Sam's granny, a ballet presentation and another Christmas concert to look forward to before school closes and we find ourselves in the middle of yet another December surgery! I am hoping and praying (so please feel free to join in) that with this being a far less complicated surgery, that Sam's recovery from both the op and the anaesthetic will be so much less traumatic than it was in August. With it being so close to the time (basically the day before) when everyone packs up and heads-off on leave for the next few weeks, I do not want any unexpected issues and am waiting anxiously to find out whether the anaesthetist who did Sam's thumbs and tethered spinal cord will be able to juggle his already hectic schedule to help us out again (Yet again, prayers in this department would be so appreciated).

In the past fourteen days......

2011-11-01T13:00:00.001+02:00

...we've had two speech therapies; one occupation therapy; one very tearful and tantrum-filled physiotherapy; Meghan's school Christmas concert (which had been performed for us as at home several times by then); attended an awesome Saturday morning breakfast at our church blessed with an equally awesome message about clay pots; attended a surprisingly undisturbed sermon the following morning with the help of some chocolate (Yes, at 9:30am); had two ENT consultations - one for myself and one for Sam where it was found that Sam once again has fluid in his ears; spent several days (yet again) filled with frustration as to why grommets/tubes were not inserted into Sam's ear when he happened to be in a hospital; in a theatre, under anaesthetic, accompanied by a letter from another specialist explaining the extensive problems Sam had had with his ears over the previous four months, surrounded by both the necessary equipment as well as the necessary specialist having another ENT procedure; had an appointment with Sam's urologist; tentatively scheduled the removal of the right testicle for the week of 12 - 15 December; realised that if Sam's ears don't clear up by then and grommets need to be inserted shortly, he will be having two anaesthetics barely a month apart; spent another couple of days moping about why it seems to be impossible to simply choose just ONE hospital and take it for granted that EACH AND EVERY specialist there will attend to your child with an equal balance of professionalism, expertise and (last but certainly not least) a comforting degree of compassion and consideration; then spent several hours appreciating how blessed we are that, despite not being able to co-ordinate all Sam's surgeries or even follow-up appointments, we have managed to find some of the most professional, expert, compassionate and considerate specialists available here; attempted to update this blog a minimum of five times; deleted a minimum of five draft posts due to the content thereof becoming irrelevant in the time it took to actually publish; spent several hours hunting down the latest craze in Meghan's clique being "teachers pets" (awesome littly fuzzy creatures with teeny weeny little booklets inside on all sorts of things like learning how to draw, magic tricks, jokes, etc); bought yet another new pram for Sam in the hope that this one will indeed meet Sam's sensory defensive requirements; had a GP visit for Meg who is fighting a particularly troublesome URTI; discovered the Talking Tom iPad app; spent several hours watching Sam grow addicted to the Talking Tom iPad app and all this without taking into account the time it took to give Sam 70 odd bottles, change close to 100 nappies, spend a minimum of fourteen hours putting Sam to sleep, 21 hours feeding him his porridge/food and all the other trivial tasks like stimulating play, sensory brushing, bottle-washing, formula making, supper making, etc.

Phew....now I don't feel so bad about not having updated his blog in fourteen days :-D

The Overflow of the Heart.....

2011-10-18T12:56:00.000+02:00

"For out of the overflow of the heart the mouth speaks." (Matt 12:34)

So, if our heart is troubled then so are our words. This is why I often choose not to blog during particularly trying times but to rather be still for a while until, almost always, someone (usually uknowingly) puts everything into perspective again. Oh for sure when the problems are as annoying, but still relatively superficial, as self-righteous remarks made in a doctor's room or a derogatory comment made by a small boy lacking guidance and a good set of values, I cannot wait to pounce on the keyboard and vent my anger. But when, instead of anger, you are dealing with fear and downheartedness - emotions which are far more difficult to overcome - sometimes it takes a little longer to work through. Just as importantly, I don't want Sam's blog to become one neverending mash of melancholy filled with doom and gloom posts about how awful it can be to have a child with special needs.

If I had given daily reports about Sam's wellbeing over the past week, it would have been nothing as spectacular as near-death experiences or fatal diagnosis' or anything nearly as soap-opera-like as that. It would have been seemingly insignificant issues like the fact that when fetching Meghan from school one day, as one of her friends walked up to greet Sam with a lovely smile, she received a blow to the face in return. Or that one afternoon, while trying to collect Sam's medication from the chemist, he threw such violent, screaming tantrums that, with trying to co-ordinate holding on to my wallet, holding the meds and signing the cash slip, he almost threw himself completely out of my arms and onto the floor, amidst a good few "shames" from other customers and one smug dad who looked at me and then pointedly looked at his daughter of roughly the same age, who was sitting angel-like in the trolley, and gave her a kiss on the forehead as if to say "See, this is how it should be...". There would be mention of a generally aggressive, exceptionally frustrated and obviously unhappy little boy who has smiled seldom over the last few days while now making a habit of rocking on all fours while hitting his forehead into the head of his cot, the cupboard doors or even the safety gate.

Now I am so not the kind of person that likes surprises or guessing games and my close family will readily vouch for that after the number of times I ask them to tell me the endings of movies or the perhaps unanticipated reaction Chris gets when he tells me to just get in the car and when I ask where we're going, he says "You'll see..." or something to that effect. I don't do surprises...more importantly, I don't do the unknown. Not because I am that boring - although I do so *LOVE* boring and predictable...but because I want to always be absolutely 100% prepared. I want to be prepared for a bad/sad ending in a movie - I will still watch it, I just want to prepare myself. I want to be prepared for a "surprise" journey, so that I know what to take with, what to wear, the length of the journey, etc. And, perhaps the most important and most delicate matter in our lives at the moment, I want to be completely, utterly and unquestionably prepared for Sam...and I am not. Because I don't know how to ease his discomfort or pain, I don't know how to remedy his frustration at not being able to communicate and I don't know how to take away his sensory issues.

I am quite sure that one, or all, of these three things are responsible for where Sam is at the moment. I say that he has pain/discomfort because when I lie next to him at night while he tosses and literally thrashes himself around in the bed NON-STOP, he often takes my hand and presses it to his groin in the area where his two large cuts are from the last operation. I test his urine regularly, so I know for sure its not a bladder infection. I say frustration at not being able to communicate because when before he would make gentle gestures with his hand about something he wanted or somewhere he wanted to go, he now thrashes his little arm out angrily and grunts and moans or, if you are standing up or your back is to him, he will crawl up behind you and hit you...powerfully and aggressively. And I say sensory issues because of the constantly banging his head up against things and the fact that (with the exception of some progress in his hand defensiveness) there has been absolutely no improvement with regards to being able to sit him down on the floor without him getting scared, moving him around in the car, lying him back in the bath to wash his hair, etc.

Nothing has changed, while I sit and type this post, except the fact that I read two separate updates yesterday from other RTS moms about about how good life is for them right now (can't even remember if it was on FB or their actual blogs - have to resort to skimming for now)...the word "perfect" might even have been used. Both of these moms have four-year old little boys with RTS and while it was by no means a mind-blowing jolt into the reassuring realm of perspective, it did put my mind a little at ease that there will come a time, the Lord willing, when I can also make a similar statement.

For now, we keep going because we have to...although fantasising about a little village/town where EVERYONE living there either has their own special needs angel or is close family to or valuable source of support to a family with a special needs child, sure helps sometimes...a village where unacceptance, scorn, misconceptions, judgement and self-righteous are a forbidden law. A little village complete with a hospital and intervention centre filled to the brim with caring, compassionate and inspirations specialists, school and daycare centre, shopping centre, theme park, recreation centre complete with an undercover, sensory-pleasing swimming pool, SN-friendly churches and restaurants...I could go on and on... "Oh Happy Days...Oh Happy Days"

Random pics :

Meg had her athletics day on Friday. I had originally planned on taking Sam with me, but due to his rather unsocial behaviour lately decided not to - thank goodness! The activities were eventually rained out due to rather miserable weather. Sam would have loved seeing the 'Linka Smurfs though. Luckily over the past couple of weeks Meghan has done several (a day) renditions of each and every cheerleading song they were going to be signing so we, Sam included, possibly know the actions better than what the smurfs did.

Meg, Kaylee and Jenna moments before they sprung away with their high jump (pardon the pun).

A pic I posted on FB on Sunday of Sam reading to his teddies!

Sam trying to show of his iPadding abilities...I left him (albeit surrounded with cushions and plonkey's as one would a 5 month old baby) with Old Macdonal E-I-E-I-Oing on his iPad and next thing he'd found his way to the photo's I'd used for the iComm app...

Something really positive that happened this morning. While feeding Sam, who was holding his favourite number 5, he slowly and deliberately placed 5 into his bowl of Kreemy Meal. Ordinarily this would not be reason for excitement, unless you are dealing with a little boy who is extremely sensory defensive in his hands. He then took 5 back out again, messed with his other hand in the little bit of porridge that had landed on his tray and continued to hold 5, although rather gingerly between two fingers, while he carried on playing!

Definite progress!

Bye Bye Charity Bond...Bye Bye Now

2011-10-10T12:07:00.001+02:00

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

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

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

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

Peyton with her Dad

and Sam with his Dad

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

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

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

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

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

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

*Oh Happy Days.....*

Torture...pure T.O.R.T.U.R.E.

2011-10-07T09:07:00.000+02:00

These are the words that have, very melodramatically, been delivered to me several times over the past few days by my Glee-loving, feigning dizziness, ever-putting-on-a-show daughter. On Wednesday, when we saw the hand OT at Vincent Pallotti, we could not find parking close to the hand clinic so had to park in the hospital's general parking area about 300 metres away from the entrance. I know what you're thinking...she's young, energetic and fit...or so you'd think, AND didn't have a squirmey-wormey smurf on the arm. But alas, when we left the clinic just before noon, it was quite a show she put on complete with moments of nearly collapsing to the ground with the "torture...pure torture" of having to walk so far to the car!

Yesterday was even more of a Meg-atastrophe...not only could we not find parking in the general parking area, we had to park on an upper level parking area, which meant stairs. THE HORROR!!! So again, when we left, it was amidst regular outbursts of "torture...pure torture". She really is such a funny kid. Chris desperately wanted me to take a video of her "watching" Glee the other evening (she watches each episode an absolute minimum of at least four/five times...every....single...day!). Who woulda thought Glee was an interactive programme and required the watcher thereof to mimic every move made throughout the show. You would have thought she'd be able manage the occasional transition between hospital and car then, right? Anyway, Meg has been an invaluable help to me over the past week - it's thanks to her that Kim managed to refit Sam's splint on Wednesday, this time without hysterical screaming which meant a much more effective fit. And yesterday kept Sam occupied through pretty much our entire appointment with Dr dT, so that I could concentrate on what was being said. So I have just reserved tickets for her and and I to go watch the new Smurf 3-D movie this evening...it's a surprise, haven't told her yet.

Oh yes...our mysterious "orthopaed" appointment yesterday afternoon. I was watching an old Hillsong episode while doing my own "torture...pure torture" on the spinning bike last night. It was about negativity and how even a remotely negative outlook effects everything...our thoughts, our actions...our perceptions! Yesterday was a prime example. Here's what I was thinking : last week, when we saw Sam's hand surgeon, I had asked him about the lack of fluidity in Sam's hand movements (eg. when he waves, it is done in a series of jerks as opposed to a flowing movement) and he'd said that he thought it to be a neurological issue. I didn't prod any further because the whole appointment lasted about two hours and of course, by then, Sam was doing his own remarkably accurate impression of Grumpy Smurf. But by the time we arrived back at home the whole "neurological" thing had had plenty of time to mull around in my head and I regretted not asking for more information. Then on Friday morning, when Dr dT's assistant phoned and requested that I bring Sam in, my mind went wild and I figured that perhaps Dr C had also been giving more thought to the neurological thing and done some further investigating and come up with a gloomy diagnosis, but wanted Dr dT's opinion on it before one of them shared the bad news with me! Seriously, that is really what I was expecting. Boy, was I wrong!

The real motivation behind the request was that Dr dT had in fact been researching and considering and researching and considering...and wanted to explain to me, in person, with the aid of graphics and Sam's x-rays exactly what is going on in Sam's little left foot and what the plan is to rectify it (and, to top it off, there was no charge for the consultation). Slightly off the mark I was, I'd say. And, yes...here it comes...I am absolutely loving Sam's specialist's at the moment.

The only drawback (is there ever not one?) is that we might be doing the surgery on Sam's foot a little sooner than I originally anticipated, possibly by the age of 3/3½ which would mean May-December next year, but I was hoping to only do the removal of the right testicle around April (which would mean a eight month gap between this and the last op) but with Dr dT and Dr J (urologist) being at different hospitals we would not be able to couple the two surgeries together, so let's hope we are looking more around the 3½ yrs mark for the foot surgery. I am becoming increasinly anxious about the fact that that little right testicle is wafting around halfway to where it's supposed to be, mostly because of the reaction I get from others, mostly doctors actually, when I tell them. Perhaps we need to bump up that surgery to mid-March, depending on how much time I'll need to recover from the Argus. In fact, now that I think about it, with the Argus officially taking place on the 11th March, I might very well still be cycling it on the 15th (Yes, I do know you only have seven hours to finish)...mmmm, might need some further thought, the op that is....already have a headache just thinking about it all.

Our ST for this morning was cancelled due to an illness in ST's family, so we resume next Thursday. And of course we have little Matt & Nic's birthday parties tomorrow. Yay! for seeing our RTS family again. And, on Monday morning, it's back to PT...Yikes!

Remember this pic :

Sam in May 2010

And here's how much he's grown :

He can barely fit into the swing now and, seeing as he's become too heavy for it to mechanically swing him, he now swings himself. Did I mention that at our last paed appointment, Dr B pointed out that, taking Sam's corrected age into consideration, he is just just touching the very bottom line on a NORMAL...yes, I said it, NORMAL weight graph!

Mom-losing-it...again.

2011-10-04T13:52:00.000+02:00

I am feeling ever-so-slightly overwhelmed with all Sam's doctor and therapy appointments at the moment. Was sooooo looking forward to a "quiet" week what with the short school break but before we knew it, every day was filled with one or the other intervention by the end of last week already, with the exception of today when we got to enjoy a totally unmedically-related breakfast with Aunty M and the boys! (Dankie julle xxx). We did also manage to slip away to Stilbaai for the weekend to celebrate Ouma's birthday with her and, even though the trip started off a bit shakily when part of my tooth (for which I am currently undergoing root canal ) went M.I.A. after I bit into a cheese puff (yes...a cheese puff) only an hour into our journey. Still, the remainder of the weekend went well with Sam being not too whingey on the ride there and, other than one throw-up incident on Saturday night, us being able to enjoy some quality time with family.

Sam had his very first appointment and assessment with his new NDT speechie on Friday morning. We are going to be using the Prompt speech technique with Sam initially which, although it seems a little intrusive for Sam's liking at the moment, looks really promising. Sam's OT, Pippa, has offered to do a short 15min session with Sam before his speech appointments to help desensitise him, which I am going to mention to his ST on Friday. Yes, I've said it a million times...and, please Lord, let me say it a million more....having therapists/doctors who go over and beyond their professional requirements is key to both your SN child's and your own confidence and wellbeing. Pippa and I were discussing the need for Sam to return to PT as well (which I've neglected recently because I felt his sensory defensiveness and desperate need for communication are currently far more pressing) as muscle tone, imbalance, etc can also play a part in speech difficulties. It was just one of "those" moments when all of a sudden, in a split second, everything just seemed too much. In my mind I had just seemed to get on top of Sam's schedule and needs. To top it off, bouncing around in the back of my mind constantly is the fact that Sam's orthopaed's (the "other" orthopaed - legs, hips, feet, neck, etc) assistant phoned on Thursday morning and asked me to please bring Sam in this coming Thursday. Normally we only see him every six months, with July having been our most recent appointment, and neither he nor many of Sam's other doctors very regularly phone US to schedule appointments. So when Pippa mentioned the PT, for a moment I felt a little fragile and, if the truth be known, there might have been an ever so-slight lip quiver and stray tear forcing its way out (much to Meghan's absolute horror). Once my flash of weakness and uncertainty had disappeared, we discussed the possibility of scheduling a team meeting with all of Sam's therapists and specialists, in order to make sure no areas are being overlapped nor, more importantly, neglected. I am not sure about the practicality of such a meeting with everyone's hectic schedules, but certainly do see a need for such a meeting so will mention the possibility to the parties concerned and see what the reactions are.

Tomorrow we are off to the hand OT to have a look at Sam's splint. The nighttime wearing of the splint has not been going well, with the one night Sam seemed to be tolerating it relatively comfortably being the night that he threw up in Stilbaai...and all over the splint. I am a little concerned that it is not a perfect fit as the little finger, being the most bent at this point, seems to evade the strapping completely.

On Thursday we have the requested appointment with Dr dT and then on Friday we are off, iPad in hand, to ST.

Alas, there is a light at the end of the tunnel...we have been invited to share in the celebrating of Matt and Nic Tooke's birthdays, this coming Saturday! It will be WONDERFUL to get to visit with our RTS family and catch-up in "real life" on all the events of the last few months.

Camp-say-whosey-whatsit?

2011-09-28T16:50:00.000+02:00

Yesterday morning we had our much anticipated follow-up appointment with Sam's hand surgeon to a) check that the bones in his thumbs are still growing straight after last year's procedure and b) to have a look at why those little smurfy fingers are growing in a bit of a funky curve. The entire appointment took two hours...which ordinarily would be a little frustrating but throw in a blessed outcome and it becomes less frustrating and so much more worth the trouble.

Firstly - Sam's thumbs, although not completely "normal", continue to grow in as straight a manner as possible, ie. no regression to growing skew again. We will still have to look at repeating the operation when Sam is five but should Sam seem to have a relative amount of functionality at that time, I am not too certain we would go ahead with the surgery.

Secondly, Sam has a condition called Camptodactyly in three of his fingers on the left hand and two fingers on the right hand. I was certain the remedy would involve a surgery in the near future, but amazinly Dr C feels nighttime splinting might be aggressive enough to correct the fingers. So, most of yesterday's two hours was first spent trying to get remotely accurate x-rays of the thumbs and then a good sitting at the occupational therapist to fashion a splint for Sam. The only problematic issue is that take one little smurf + some serious sensory issues = not great success with handling of hands/fingers....as the poor OT discovered yesterday while trying to mould the splint on a squirming, screaming Sam. I decided that I would wait for Sam to fall asleep last night before putting the splint on but eventually didn't go through with it because for the first time in a long time Sam fell asleep relatively easily and seemed quite peaceful. Taking into consideration the difficulty we've had over the past few weeks to first get Sam to sleep at night and then to keep him asleep, I decided not to rock the boat on the one night it was all going well. Tonight though, regardless of all of this, I am definitely going to put the splint on - "Oh Happy Days"

It looks like Spring has finally sprung here and Sam and I have celebrated with an occasional morning walk, although Sam looks more like he's going on safari in the North Pole (if there is such a thing) instead of a quick stroll around the block.

Spring or no Spring, the morning air is still quite nippy and we are (touch wood) off to Stilbaai for the weekend so can't have our little man getting ill now.

Sam seems to be getting back into the OT swing of things (pardon the pun) and gave Pippa a much easier go of it on Monday morning, although I think it is much more Pippa's "special" way with Sam as opposed to Sam putting in a whole lot of effort. Tsk Tsk....if it was easy, it just wouldn't be Sam!

I have to rush off as my spirited little boy, amongst all his new-found abilities, has learned how to throw a "fake" tantrum by forcing out a really exaggerated type of cry/grunt/shriek...all because I refused to let him sit on my lap and press on the pc keyboard while I am trying to update his blog :)

You have to see it to believe it.....

2011-09-26T19:19:00.000+02:00

For some time now, when Sam watches his Brainy Baby Numbers dvd, he will hold up which ever foam number they are speaking about at that moment. I have taken a video of this too, a while ago, but my near-hysterical exclamations of joy completely overpower the video so, in an attempt to preserve some element of self-respect, I decided not to post the video.

This afternoon while watching Sam carefully select his numbers I couldn't quite understand why, when he's done it correctly so many times before, he kept selecting the incorrect numbers. My first reaction was to try and correct him but it was only after the second "take" that I realised he was selecting his foam numbers, in the correct order of course, in advance before they actually appeared on the screen. My silence thereafter is a clear indication of how stunned I was.....it's a bit of a long video even though I did stop at number 5 (be sure to turn the volume up so you can hear which number is being counted on the dvd) :

To say that my little smurf blew me away today would be the understatement of the year...Brampies and I barely managed to control the tears when we began to fully comprehend the amazing blessing we'd experienced. How awesome is our God!!!!

A One-Smurf Band

2011-09-21T12:55:00.000+02:00

I am becoming more and more concerned about our little man's absolute LOVE for tv, especially as he has taught himself how to turn the volume up using the buttons on the tv. Just this morning we had a war-of-the-fingers as I stood behind him with the remote and for every notch I turned the volume down, so he turned it up.The only, very slight, consolation is that he is only interested in watching singing/music or anything to do with numbers and counting. He has no interest in anything remotely cartooney anymore, not even Mickey Mouse Clubhouse which used to be his favourite.

One other not-too-bad aspect is that he has picked up a decent amount of knowledge from his music/number shows, coupled with our daily "lessons" on numbers, counting, colours, etc. (although he does seem to pay more attention to the tv lately and when I am sitting in front of him with whatever activity we are busy with at that moment, he will quite often look passed me and point to the tv - maybe I should make myself a cardboard frame to wear with some background music from a hidden iPod). Anyway, Sam quite often imitates what he sees on the tv especially on his Brainy Baby : Music dvd (as I've mentioned before, all the characters on the Brainy Baby dvd's are children which I think is actually what the attraction is for Sam). So, when the children are learning about musical instruments Sam is keen to participate....

Sam can find a rhythm in *anything* even something simple as running bathwater and, of course, anything remotely rhythmic calls for a serious amount of hand-flapping and head-shaking. He is awfully sweet, this little boy.

We finally got back into our OT routine yesterday and it felt good...well for me anyway. Whenever we are therapy-deprived I feel unsettled and anxious, like we are losing valuable time. I know, doesn't make sense, not even to me :) So it was great to see Nita and Pippa again yesterday, although with the latest surgery and sensory regression, even Pippa noted how defensive Sam is at the moment. It'll probably just take one or two more sessions before Sam's back to his old self again. Next week we've ST and a trip to the hand surgeon to add to our schedule as well and an utterly thrilling trip to the dentist for me, appointment no. 2 in yet another root canal process. I am keen to get Sam to a dentist soon too, although I don't see any obvious cavities or problems and he's quite okay with teeth brushing at the moment (surprisingly), has even taken to sticking his tongue out so I can brush that too. I guess with hair brushing, sensory brushing and teeth brushing he just figures ALL of him needs some type of brushing. I have noticed that his one little front tooth seems to be discolouring a little at the back so am thinking of having it checked out, but will wait until we've our orthopaedic appointment behind us before I subject Sam to any unnecessary trauma by adding another doc to our entourage.

We have had quite a long stretch as well since our last PT, but Sam and I still have our own PT session almost every day. He has gotten awfully cute with his PT exercises and when stretching his hams he does the leg exercises on his own and has even started lifting his own bum now...Heidi would *love* this, she tried at every session to get him to do this, but I am almost certain that if I had to try and coax him to do it during an actual PT session, Sam would just lie there like a ragdoll.

In the middle of typing this blog, I slipped out for my very first EVER Sam-less breakie with Aunty M, while Brampies stayed with Sam.....A-L-O-N-E! And, how do you know our Sam, he had to of course give Brampies a dirty nappy (Brampies' first EVER poo nappy...LOL). It was awesome to just sit back and indulge in some girly chatter while drinking a warm cappucino and munching on a muffin...thanks M xxx. And I got home to a perfectly calm little smurf and equally calm Brampies, with the only "oops" being that Sam has somehow managed to change our tv to black and white and I can't figure out how to fix it.

A short update on Sam's eating and sleeping (short because I am scared to jinx the good stuff) : Sam's appetite seems to have returned and/or his sudden aversion to pureed food has disappeared, whichever was the culprit. Sleeping is still a struggle with some really trying moments, like last night when it took two hours of trying to get him to sleep before eventually caving in and just going to lie with him in our bed. Oh, but at least he is eating again....thank the Lord!

Luvin' Reflux

2011-09-18T11:09:00.000+02:00

We possibly just attended our shortest church service *ever*! Why,you may ask...because our v-wording smurf, just as our minister's daughter began giving her first ever testimony, refluxed up not only the bottle he'd just been drinking, but both his porridge and morning bottle as well.

Luvin' reflux right now *sigh* (especially as this was the first time in almost 2 months that Sam seemed healthy enough to attend!)

Ride for Rubinstein-Taybi Syndrome

2011-09-16T12:00:00.000+02:00

Well, it's confirmed...Chris and I have entered to ride in the Cape Argus Pick 'n Pay Cycle Tour being held on 11 March 2012. We would desperately love to be able to ride as a Charity Bond for RTS, which would mean we'd be featured on the official website and be able to purchase a stand at the Expo at a special rate, all in the hope of raising a greater awareness of Rubinstein-Taybi Syndrome in South Africa.

The only slight drawback is that to enter as part of a Charity Bond you pay a R500.00 registration fee, as opposed to the normal R300.00 but there are a number of advantages of riding in the Bond, well worth the extra R200.00 in my opinion, being :

A start time of no later than 08:45am (great news for "new riders" and especially for me as a first-time rider, as the latest starting time is 10:00am)
A "special" goody bag
A special area at registration for collection of race packs
The opportunity to support a good cause

In order to be able to ride as a Bond, we need to have confirmed a minimum of ten riders by 30th September 2011 and (at R500.00 per rider) be able to pay the R5,000.00 by that time as well. Thereafter, we have until 15 January 2012 to add riders to our Bond.

Yes, the thought of cycling 110km's is pretty daunting for some (or just plain scary for me), but the modus operandi from my side is to simply have heaps of fun, to get caught up in the excitement and anticipation of "getting ready" before the time...enough to actually make the 110km's within the allocated time...and of course doing all this while knowing I am doing something for my precious little smurf. So you need not be a veteran or even half-serious cyclist to join us. And to give you an idea of how challenging this is going to be for me....it took me half an hour to cycle 5km's on Wed! Yikes! Oh please let me finish in less than eleven hours :)

So come on, folks, we need to find just eight riders in fourteen days (Gee, that sounded a lot simpler in my head). For further details, email me at nicky.debeer@telkomsa.net

(Not so) Wordless Wednesday

2011-09-14T18:15:00.000+02:00

Hurry! Hurry!

2011-09-12T12:48:00.000+02:00

As I frantically switch the computer on, grabbing a bowl of cereal while it starts up (yes, it IS 11:38am already but it's the first chance I've had to have breakfast) I am already mentally typing my post in order to waste no time. You see, it has just taken forty minutes to get Protesting Smurf to sleep and I guarantee he will stay asleep for less than half of that.

So, a quick review of the past week....on Friday, as mentioned, we headed off to the paed with a temp, a cough and a snotty nose. Paed confirmed that Sam has croup...yet again. Started the oral cortisone and whammed him with a mighty dose of Pulmicort through the neb...

And when I say "mighty" it's no exaggeration, it took over forty-five minutes to completely neb the 8mls. We had to take a five minute break in between but, although he fought like crazy when we first started (as usual), eventually Sam settled down and just sat it through.

We've been having a really rough time getting Sam to eat. He was tolerating absolutely NO pureed food last week, not even porridge. In fact, there were two days where he ate practically nothing - thank goodness for Pedisure, which at least gives you peace of mind that he is getting some fragment of nutrition in. By Monday I was totally convinced there had to be a physical/medical reason for Sam's refusing to eat because at times he would open his mouth for a spoonful of food, but just not swallow it. He kept one mouthful in his mouth for over twenty MINUTES! He doesn't quite know how to spit the food out but eventually the food was reduced to nothing more than an orangey-slimey-glob and just sort of poured out of his mouth while he was crawling. So off we went to the GP on Monday, almost certain we were dealing with tonsilitis at the very least. The diagnosis? No tonsilitis, no weird obstructions in his throat preventing swallowing, no sores in his mouth...not even remotely red and/or swollen teething gums. Nothing except for a fairly mild ear infection and the persistent low-grade temp. (Did you gasp when you read "ear infection" and wonder to yourself why, if Sam has had continuous problems with his ears for the last four months, was under anaesthetic for another ENT procedure AND all the equipment to insert grommets/tubes had been rushed to the theatre moments before Sam's op because Dr S was so certain Sam would need gromments - why they weren't put in? I, along with several other doctors, have found ourselves wondering the exact same thing!)

So off we went on Monday afternoon, with another antibiotic but still completely baffled as to why Sam was not eating. Over the past couple of months I have slowly being introducing small amounts of "normal" food into Sam's diet, largely because I could see he was quickly becoming bored with purity especially because he is so incredibly fussy and eats only a tiny variety. So on Tuesday I thought that this HAS to be the problem...Sam wants to eat "normal" food all the time. I made him a bowl of instant noodles (cooked to almost a pulp, of course) and he ate it. I thought "Yay! Problem solved. My little smurf is just growing up!"

As if it could possibly be that easy!

On Tuesday we decided to make a last minute reservation for Goudini Spa. Sam's croup seemed to be gone, he had been in better spirits on Tuesday morning and after our lunchtime success we were all feeling a little more positive. Meghan left on Wednesday morning for her very first school camp, it was a very stressful couple of weeks leading up to Wednesday as she is very much a "homely" little girl and not always comfortable spending time away from home. It would be first time she would be sleeping out of the house in a good couple of years. After a rather teary farewell (on both her's and my part) on Wednesday, we packed up and headed off for Goudini. Although Sam's eating victory was short-lived and we were back to almost force-feeding him by Thursday, the rest of our little "vacation" was awesome. The resort was a little busier than we expected, just enough to feel like we weren't alone but peaceful enough to just do what we wanted, when we wanted.

Of course we went prepared and packed Sam's dvd player in so that he didn't have to miss out on three day's of number counting!

The outside rock pool (exclusive to our little circle of bungalows) was literally a stone's throw away from our patio. On Wednesday afternoon it was warm enough outside just to make do with this pool, but by Thursday morning strong winds had set in and after some afternoon drizzling, we resorted to the undercover pool.

Sam *LOVED* the warmwater pools (there's a little video of him at the end of the post)!

Just taking it easy on Saturday......

And so, for our next really REALLY big news....Sam has an iPad! The topic of Sam's communication capabilities, or lack thereof, has been one of the main topics in our home lately. Although at one point Sam seemed to show some aptitude towards signing, we have stagnated and he makes very little effort now with this at all. He can, to an extent, communicate certain things to us by either gesturing with his hand or actually physically taking our hand and, say, putting it on a book he wants us to read. Also, as with many of Sam's RTS brothers and sisters, Sam's receptive language is excellent. He almost daily takes us by surprise by understanding things we say to him, or even to each other. There was a time when Sam did do some baby-babbling, but he hasn't done that in months and now most of his verbal language consists of grunts or a really lovely kind of sing-songing! Of course our heart's desire is that Sam will talk one day, but we need to be realistic as well and make all possible resources available to him which might make it possible for him to communicate with us. Speech has also been a regular topic on the RTS listserve recently, which couldn't have come at a better time, and one comment I read which stays in my mind and was a definining moment for me was this one (hope you don't mind Kristi) :

"Even though it's not Noah's actual voice on his I pad it is still his thoughts. So to me it IS his voice."

So Chris and I chatted...and chatted....and chatted some more. We decided that Sam will undoubtedly benefit from the the iPad, even if he is not able to fully utilise it from the beginning, and the knowledge that a large number of Sam's RTS brothers and sisters rely very much on their iPads for communication pretty much had us convinced this is the way we want to go. Our only concern and obstacle was the price of the iPad. And that's round about when Sam's precious Aunty Anthea stepped in. As a mom of two special needs girls and being extremely passionate about giving non-verbal children a voice, Aunty Anthea was desperate for Sam to have the iPad and so contributed a large portion of the cost thereof as an awesome, totally unexpected, hugely appreciated gift to our Sam! How amazing is that? We can never thank you enough, Aunty Anthea, or fully express how grateful we are to you for making this possible for us and for Sam of course xxx

So, we are slowly introducing iPadding Smurf to this lovely new device. We have looked at a couple of communication applications so far as well as some fun apps for Sam. I am hoping to make an appointment with the ST before the end of the week so that we can also have a professional input as well...but it is soooooooooooo exciting!

In closing, a videa of Sam in the warm pool at Goudini. Just before I picked up the camera, he was acting like a crazy loon...squealing and so on, but decided "less is more" by the time I pressed "record".

P.S. Sam has now been asleep for 1hr57mins.....that's the longest sleep in over a week....WHOOP! WHOOP!

Bit of an unfair trade :(

2011-09-02T09:17:00.000+02:00

We have had to trade our much anticipated three day's of hot pool swimming, relaxing and just having a much-needed break next week for a visit with Sam's paed at 12:00 today instead, thanks to increased coughing, gagging, a blocked nose and now a temp as well.

Is there a more descriptive, expressive word for *FRUSTRATED*?

If there is.....that's how I'm feeling!

Oh Happy Days! (Wish I could get that song out of my head...especially as those are the only three words I know! I just might have finally lost "it", folks). Oh Happy Days!

Tuesday's post........now Wednesday's post......Oh please let's manage Thursday

2011-09-01T12:02:00.000+02:00

You know what they say, third time lucky - so here's hoping my third attempt at publishing this post actually makes it. On Tuesday I downloaded the pics and started adding my comments but our little smurf, even more niggly than usual thanks to the onset of something viral or pneumonial...or both....was not having any of it. Tried again on Wednesday morning, no luck. Decided by Wednesday afternoon to at least just post the pics under the heading "Wordless Wednesday" but the second I settled down at the desk, two desperately-pleading blue eyes planted themselves at my feet, completely irresistable of course. So I picked our little man up and sat him on my lap, thinking I could surely manage to open the blog, go to edit posts and press "publish post", right? Wrong (again)! Ten little fingers reached instantly for the keyboard, so I pushed it as far away as what my short arms would allow only to find two little hands trying mightily to remove dad's speakers from the hard drive. Aborted Project Posting-with-Smurf-on-lap!

So I am determined to post something today so if I find myself having to stop mid-sentence, please understand :)

We have regressed to where we were several months ago with trying to get Sam to sleep, now both during the day and the evenings. Walking/shushing him only lasts as long as he's in my arms, the second I lay him down he's instantly awake. This morning was no different, walked up and down with him for over 20 mins, laid him down and there it was. So, after an exhausting couple of weeks now, this morning I decided just to leave him in his cot to sob a little before picking him up. It's not that easy a task because of the ever-present threat of him v-wording if he cries too much and also because his wheezing and coughing does have me a little worried. Nevertheless, I settled him down, covered him with his blanket again (which he promptly kicked off) and left the room. Twenty-five minutes later, after much protesting, kicking and crying, he fell asleep and I thought WOO HOO! And now, sixteen minutes after THAT (in other words - as I sit here typing this), I can hear him moaning in his cot. Was it worth it? Absolutely NOT! My goodness....what am I going to do :(

Well up until Sam's getting sick a couple of days ago, he was doing heaps better with regards to recovering from his surgery and (as seen in the pics below) was even settling down into his usual playful and joyful self, so much so that Chris and I have been contemplating a little three-day trip next week. Meg is scheduled to go on a her first ever school camp on Wednesday so we thought, just in case, we would book into a nearby resort and enjoy the, hopefully, mid-week peacefulness there while ensuring we are closeby to Meg should she not last the entire three days away. However, with Sam being sick now we will more than likely have to cancel our plans as being in and out of the warmwater pools will probably just leave us spending three days in hospital as well. It was kinda exciting entertaining the thought of taking a break :)

In closing, some comment-less pics, whilst I go attend to Wide-Awake Smurf...
*sigh*

Pondering.....................

2011-08-25T19:51:00.001+02:00

Sam had his two week post-op appointment yesterday afternoon. We sat in the waiting room for almost three times the length of time our actual consultation took. Fear not though...the consultation took less than ten minutes so the thirty minutes spent waiting was nowhere near catastrophic (we've endured almost twice as long sometimes), however it was the rather hostile ambience in the waiting room that made it slightly unpleasant. We were met with a rather dismissive nod of the head and a barely audible something-resembling-a-greeting/acknowledgement of presence. (Just a quick ponder - when one decides to take on a position as a medical practitioner's receptionist, you do surely take into account that said position will entail considerable interaction with people, right?).

With an already anxious knot in my stomach over Sam's questionable behaviour, especially in public, I was relieved to find the waiting room empty. However, literally before I had a chance to sit down an additional six people came in - a mom with three kiddies in tow and another mom with just the one little boy. The kids all promptly grabbed themselves a book from the bookcase and settled down, with the exception of one little girl who after throwing a rather entertaining tantrum when mom refused to surrender her mag in order to read her little girl a story, came and sat down next to us in a bit of a sulk. By this time I had already read through the only two books I had managed to grab out of the car on the way in, but which books Sam was already throwing down on the floor from frustration and boredom. Sam started squirming and throwing himself back and I prepared myself for the almost inevitable smack in the face. In an effort to distract him, I grabbed my cellphone and quickly started the video of Meg singing "Wheels on the Bus" to Sam. Just as I did this, an elderly lady came out of the consultation room and, as we sat right up against the reception's desk, came and stood right next to us. She glanced at me, holding my phone in front of Sam...at the little girl next to me, also "bookless" (obviously presuming that she belonged to me as her mom sat across the room with her siblings) and then at the other children who were all sitting reading quietly. She looked back at me and with a smug-type chuckle said "I never thought I'd see the day when you could entertain a child with a cellphone" and then to the little girl next to me "There's lots of books on the shelf for you to read" whereafter she shared a brief roll of the eyes with the mom of the one little boy, before leaving. (The mom of three kept her eyes glued to the Kate & Will article she was apparently completely engrossed in). (Just a quick ponder - at what point does any individual feel that they are *that* perfect a human being and just *that* perceptive that they should have no qualms about commenting on complete strangers' children...whether it be regarding behaviour, appearance, development, etc?). Here's building the bridge and moving on to the actual consultation which was relatively unremarkable.

Unremarkable is anything but what my own ENT appointment was this morning. It turns out that there's fairly good reason for the constant throbbing and general stuffiness of my left nasal passage...that reason being that our "Rocky Balboa wannabe" has managed to cause some serious internal swelling to my nose, as well as appearing to have dislodged my newly-septoplastied cartilage. How awesome is that? I know Sam and I are close and all but did he really feel it necessary for us both to have repetitive surgeries! Hopefully though the current swelling will go down enough for us to find at my next follow-up that things aren't as gloomy as they seemed today, possibly avoiding a retake.

Over the past couple of days I have read several posts/FB chats about a number of RTS sweeties who have taken a liking to hair pulling and/or biting and the general feel seems to be that a frustration at not being able to communicate properly is largely responsible. Apart from the discussions reminding us that many RTS families are going/have gone through similar challenges, it also got us thinking about whether lack of communication could be contributing to Sam's behaviour as well. So we are seriously contemplating buying Sam an iPad. Yes, we know that he might appear to be too young to use it, but let us take into account that he not only knows that the remote control manipulates the PVR, but can also stop and start video's on my cellphone. We are not completely decided yet, especially as an iPad is a fairly pricey little device (well for us at least) but if there's even the slightest chance that it might aid Sam's communication I think it most certainly deserves a really good think.

(Just a quick ponder - if our friendly waiting-room-consultant was so horribly taken aback at Sam's operating my cellphone, imagine her utter disapproval had it been an iPad.

Happy Days :)

2011-08-19T10:57:00.000+02:00

Perhaps "Happy Days" is a tad too extreme in the midst of Sam's slow recovery and the ever increasing SID (which resulted in Sam's much anticipated "first" bath in seven days being reduced to little more than a clingy, whiney, petrified ten minutes). Still, the Happy Dance is most certainly what I felt like doing when leaving the hospital yesterday morning after our urology consultation.

The first ten minutes started off a little shakey when Sam started crying as the dressings were being taken off (can hardly blame him though, the skin under the dressings had turned a rather angry red) and for a split-second it looked like we'd be doing some v-word cleaning up right there and then. But my super-brave little smurf pulled it together and before you could say "vomit be gone" it was all over. Even though it was already the second time I've seen the wounds, the length of each still startled me initially and of course the right side, having been subjected to a far more aggressive surgery, is still relatively swollen and bulgey.

So, the good news...is that we can wait up to as long as eighteen months to two years before we need to open up the right side to go remedy the halfway-relocated testicle. And it gets even better yet - as the left testicle is securely embedded where it's meant to be and as only one testicle is really necessary to ensure adequate hormone production when Sam hits puberty, Dr J advised that it would be quite okay for us to simply remove the right testicle when the time comes as opposed to having to put Sam through this entire ordeal again. I was *SO* relieved to hear that, that I could have skywritten "YAY" with my immensely long sigh of relief :)

We have an appointment with Sam's hand surgeon next month to make sure that his thumbs have not started angulating again and also to figure out what's going on with five of the remaining eight fingers which fingers are currently unable to be straightened/flattened. At this point it appears as though it might be a problem with his tendons being too taut, but we'll confirm this then as well as to what intervention is required. Should surgical intervention be the only option (which is how it looks right now) I am most definitely going to request that we prolong it as much as possible but trying to avoid permanent damage to the fingers is obviously also vital. It would be so amazing if it turns out that we could get away with the next twelve to eighteen months (at the very least) being completely surgery-free, after which we could perhaps consider doing the fingers and remaining teste together. After yesterday's surprisingly optimistic appointment though I can just see us leaving Dr C's rooms next month with a completely surgery-free remedy for Sam's little fingers. Here's praying :)

The only slightly downside to yesterday's events was that Sam's basic allergy tests came back negative for food products and external allergens but with raised igE levels (immunoglobulin E). For this specific purpose, a more detailed blood test was requested but unfortunately not enough blood was drawn during surgery to carry out the further tests so once Sam is feeling a little less traumatised, we will have to see about drawing some more blood. Sounds fairly simple, right? Well, if you'd been in that ward on Friday watching the pathologists desperately trying to find one of Sam's extremely elusive veins you would understand how much of a challenge this could turn out to be :) For now, we're just putting this thought out of our minds and taking it day-by-day...in between trying to sidestep Sam's still ongoing target practice, with my face being the bull's eye! *Oh Happy Days....Oh Happy Days*

A little too familiar......

2011-08-17T15:27:00.000+02:00

Okay, so we are on post-op Day no. 5 and already the all too familiar signs of the sensory trauma Sam experienced with his TSC surgery are here. The only difference? They've showed up so much sooner and with equal, if not elevating, intensity. Which effectively means we have had to accept back into our lives the relentless startling/Moro when moving or basically handling Sam or just putting him down to sit on the floor, the struggle to get him to eat and...joy of joys....the waking up crying every night. I am also struggling to control his pain effectively as suppositories are officially a no-no as from last night, due to the obvious discomfort he experiences when putting it in and the alternative option prescribed, being Myprodol suspension, makes him cough, gag and ultimately v-word so we are relying solely on 3-hourly, alternating doses of Ponstan and Panado for total pain relief - certainly not the most optimal solution. Yesterday definitely seems to have been Sam's worst day so far. In addition to his slightly-off wellbeing at the moment he seems to be holding me personally responsible for his whole ordeal. Quite a hectic statement to make, for sure...but what other assumption can I make taking his sudden obsession with smacking me in the face, more often than not square on my barely five-week-old post-surgery nose. I mean, I can certainly relate to his wanting to see more of my ENT...she really is THAT lovely a person...but there has to be another way to go about it :-D
I am trying really hard not to keep replaying the events of Friday over in my mind, but it's quite difficult when I think of all the "small" changes that could have been made which in turn would have resulted in HUGE improvements in the way everything played out. But a lesson or two has been harshly learnt in that I have had to realise I am nowhere near as assertive as I thought I was when it comes to advocating for Sam's care and that both Chris and I are sometimes so afraid of upsetting others, that it obscures our vision of ALWAYS ensuring that we act in Samuel's best interest first, regardless of whatever bad feelings might need to be dealt with as a consequence.

But, thank the Lord, tomorrow is a new day! I am going to write the remainder of this day off due to the already immense amount of time wasted on dwelling on my "what if's" and "should have's" and the potential number of "what if's" and "should have's" I am bound to dredge up before the end of the day (Oh...indulge me a little!). I am anxious to get to our follow-up appointment with the urologist tomorrow at 10:00am to find out for sure what, if any, other alternatives there are to having to put Sam through this again in Feb. I have read that there's a medication that could be used to bring the remaining teste down (although not sure if this is an option here in SA) or really kinda loved Aunty A's suggestion that we rely on faith to bring it down..but alas, I forgot that Dr J mentioned that in order to avoid the right teste from moving back up again before continuing the process, as the left one did, they have secured it to a blood vessel which I am sure would also prevent it from moving down.

In closing, some pics of our little conquering smurf....

On Saturday morning we were still under the silly disillusion that keeping Sam in bed the ENTIRE day might be an actual possibility. And Sam, being the ever compliant little babe that he his (?) decided to play along with some "fake" sleeping.

By Sunday Sam was determined to be more mobile and, as we were still doing suppositories then and had already been told by his urologist that a little crawling won't do any damage, we decided to give him some freedom. He did look frightfully "out of it' though...

...and just seemed to wander around in a bit of a daze at first.

It was't long before Sam found his favourite First Baby Words Book and wasted no time in finding one of his favourite pictures - the kitty. And talking about kittie's...our two are quite baffled, but certainly not ungrateful, for the few day's grace they've had from our tail-pulling little smurf.

Anyway, it wasn't long before simply paging through his book became too dreary and was quickly turned into some smurfskiing.....

On Monday it was Miley's turn to go for a spin!

Sam is fascinated with any picture of a person's face (particularly if it happens to be a female face)

"May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope."

Romans 15:13

And surgery No. 4 already on countdown..

2011-08-13T13:14:00.000+02:00

It's a little over twenty-four hours since Sam came out of theatre after having his adenoids removed and, more importantly, his undescended testes brought down...or should I say, partially brought down. My source of reassurance over the past couple of weeks building up to yesterday's surgery was that if we could get through Sam's TSC surgery, we could pretty much get through anything, right?

Wrong! The day started off badly with us misjudging the morning traffic into town so we arrived almost 40 mins late, then instead of the original one-and-a-half hours guestimated surgery time, Sam was under for an extra hour and eventually came out of theatre just before 11am, after going in at 7:45. And obviously there had to be a reason for the extra time, which reason could only be a complication. The complication - Sam's right testicle was sitting too high up for them to bring it all the way down in one go without damaging the blood vessel which would in turn cause the testicle to shrivel up and die. So instead the teste has been brought partially down and attached to a blood vessel to kind of hold it in place for six month's, when the urologist will have to go in again to try and finish the process. As if that wasn't devastating enough, for the first time Sam really battled to come out of the anaesthetic and the nursing staff were less than attentive (even though we were in high care) and at one stage left Sam screaming for 45 mins and only came to check on us after he'd thrown up. Sam seems to have been more traumatised this time than with the TSC surgery. He is in full sensory overload at the moment, we can hardly touch or move him without him startling or crying, even tho he's on the same painmeds as the last time, which pain meds had him doing all kinds of acrobatics regardless of the long cut in his back. Disappointment and anxiety are setting the mood at the moment, having to accept that Sam has to go through this all again so soon :(

There is one thing though that does lift the spirits and that is once again the number of messages, well wishes we've received and genuine concern shown from good friends and family, among others from Monique, Henriette, Sara, Laura, Ina, Rone, Aunty Bernie, Elaine and especially Aunty Mandie, Aunty Cammy, Granny, Brampies and Aunty Anthea and precious cousin Amy...thank you so much for keeping us and, more importantly, little smurf in your thoughts...xxx

"Family isn't always blood. It's the people in your life who want you
in theirs. The ones who accept you for who you are. The ones who
would do anything to see you smile, and who love you no matter what."

But Mom...I just LUV her!

2011-08-06T21:31:00.000+02:00

Mom [wondering why Sam is so quiet] : What you doing, Sammy?

Sam [smiling innocently] : Nah, nothing Ma...you know, just hanging around and stuff!

As soon as Mom turns her head (or so Sam thinks), he focuses again on the object of his attention, with a grin so mischievous it's even apparent from behind...while humming softly to himself "A hunting we will go....."

Okay...so first we try lift up this leg...

Or maybe it's THIS leg...

No! No! It MUST be this leg then...

Oh..COME ON! I am soooooo close.

And what, may we ask little smurf, might have you so determined to climb up on the chair?

Why, the kitty, of course! Oh please, Mom, don't just sit there giggling while I struggle so. I PROMISE not to grab her by the tail as I *ALWAYS* do. I just LUV my kitty so much. Please?

Seriously? You're just gonna sit there?

Well, who can say "No" to such a desperate little face? So, I lifted Sam up onto the chair and guided his hand to softly touch our Belle Kitty, but the second I let go of his hand, what do you think he did?

Promptly grabbed her by the tail and tried to lift her up, as always. Anyone have any great ideas/suggestions for somehow showing a predominantly non-communicative smurf how to gently deal with animals? Sigh.

Trying to climb up on chairs is not the only thing our busy little boy has been up to. In keeping with his obsession with knocking and banging, he has found the closing of Oupa's newly made safety gate to be extremely entertaining. And will go to any lengths, literally, to slam it...again...and again...and again! And, if we refuse to indulge him, he'll jolly well try and do it himself.

What a busy little boy....a gloriously and thankfully busy little boy!

So.......6 sleeps till Sam's surgeries! Let the nerves begin. *Double Sigh!*

Sam luvin' Bruno Mars....

2011-08-01T13:13:00.000+02:00

Surrendering normal and finding celebration....

2011-07-29T17:13:00.000+02:00

Somewhere, amidst the now daily chaos that is trying to keep an extremely close eye on an ever increasingly mobile smurf while scheduling and confirming details for his upcoming surgery (Oh My! That reminds me - I haven't forwarded the authorisation numbers through yet!) and not forgetting the "normal" mundane tasks of housekeeping and taking care of kids, I vaguely recall a different time...what seems like just a distant memory now...of a friend, confidante, lifter-of-my-spirits. I can't always conjure up her image in my mind - it's just been far too long, but I'll never forget the joy of our times together. While rushing to catch a falling-off-the-couch smurf this morning, something caught the corner of my eye. My heart fluttered...could it be? My heart willed me - go ahead, look. It has to be her. My heart cautioned - but what if it isn't? Why put yourself through the disappointment?

My heart always overpowers my mind - and so I turned...the overwhelming emotion of laying my eyes on her created a lump in my throat as I stumbled over words, trying to utter her name as she stood there in all her glory -

BLOG POST CREATOR!

Or BPC as I lovingly refer to her. And what do you know - there on her screen, in equal radiance and beauty, was a picture of the lovely little being solely (well, almost) responsible for the lack of blog posting. Awwwhhhhh...but can you blame me? Isn't he just the most adorable little treasure? (Okay, so I am just a little biased...but indulge me, okay?)

Our little smurf is all over the place, crawling at the speed of lightening (which speed is daily honed by his unrelentless desire to catch the kitties) and THIS statement is made with little bias as, while standing in the paed's office last week, Sam covered the entire distance of the waiting room floor in a split second to get to the little girl standing on the other side, making her mom exclaim how fast he crawls. He has a habit of pulling his peers down to the floor, not out of nastiness but purely to bring to them down to his level. So when he saw this blonde hair, blue-eyed little beauty standing with her blankie on the far side of the room his little hands and knees motored across that floor with amusing "shimmying" and speed. Not only has he mastered crawling, he is now pulling himself up on everything and then quite confidently pulls himself along the length of whatever he's holding onto. As if all of that is not enough, Sam now crawls up the stairs and then tries to turn himself around to crawl back down again - this he has not yet mastered though and usually starts whimpering when he realises he's stuck.

The smurfskiing is going well and Sam is experimenting with all different kinds of equipment, from stacking cups to his Barney bus! His view is - if I can fit it under my hand, I can smurfskii with it! I bet if he could keep either one of the kitties still for half a second he'd try using them as a smurfskii-board. I am sure we'll have more pics on this topic soon....

Sam clapping for himself when I exclaimed how well he was balancing. He never misses an opportunity to applaude his own achievements, just in case we're a little too slow.

Almost daily I spend a good few instances in awe at just how intelligent this little boy is. Do you know that if you surrender all pre-conceived notions of "normal", you can find something to celebrate and appreciate in almost every aspect of your life? A perfect example - for months now I have been posting about (and, honestly) sometimes complaining about the fact that Sam is quite severely attached to me...which means he struggles to take a bottle or food from anyone else and plain and simply bursts into tears if either I leave the room or if, say, my Dad is holding him and leaves the room with Sam. Two of the more challenging issues are that he cannot be consoled by anyone else if he is upset and, perhaps the most trying, cannot be put to sleep by anyone else.Somehow that night that I stayed in hospital a couple of weeks ago, Sam knew that I was not there - that he had to be okay with being taken care of by someone else. But since then, even if we try and "wean" him off me in the evening by me trying to "fade off into the background" about half an hour before his bedtime, so that Chris can get Sam off to sleep, he just somehow knows that I am there and will cry and, ultimately, v-word until I come and take-over.

What is there to celebrate in this? Well, up until a couple of days ago, I thought it more a task than anything else. And then, on the RTS listserv, started reading mails from several RTS moms about
the heartbreaking emotions they endure when their own little RTS sweeties either fail to or have taken considerably longer to "recognise" them as their mamma's. I started e-mailing the listserv to share how super attached Sam is and also how affectionate he can be (when he's not giving me attitude). I decided not to send my thoughts though because I can only imagine how I would feel if the tables were turned and it would probably break my heart just a little bit more. So instead, I will cherish and savour each moment that Sam protests against him and I being separated and thank the Lord for how truly blessed we are.

Kindly Note : The author hereof reserves the right to amend this post/statement at any time, without notice, should exhaustion and severe backpain begin to cloud her judgement. Thank you.

Talking about attitude - on Tuesday Sam, Chris and I were lying on the bed and Sam was trying to get Chris and I to knock on the headboard for him. It being the end of a rather long day with me trying to do a painkiller-free day since the op, I was not particularly up to lying and knocking on the headboard (horror of horrors!) so instead folded my arms underneath me so that Sam would hopefully stop trying to pull them over to knock. Sam stopped, looked at Chris (knocking frantically to keep Sam happy), looked at me...took a step forwarded and bashed me straight on the nose! My warped idea of how to find something to celebrate in this? That this little mite of a human being is prepared to stand up and fight for what he believes he truly deserves....which in this case was plain and simple obedience.Okay, it took a couple of tears (mine, not Sam's), some tissues to stop my bleeding nose and a couple of days to work through the whole process to get to this point, but at least I'm here :)

So, Sam's surgery is scheduled for 12 August at 8:00am...beginning first with his annual glaucoma examination, then the removing of his adenoids and lastly the process to rectify his undescended testes. It looks like we might get away with coming home the same day but will probably discuss this further closer to the time or, rather, on the day.

In closing : I captured THE most awesome video of Sam jamming to Bruno Mars, but with Sam's ever exploring fingers of anything remotely technical (cellphones, remotes, keyboards, etc) he has somehow deactived my phone's facility to download pics/video's to the pc. I am devastated - to the point that I am going to take my phone in to my service provider tomorrow to ask them how to remedy this, so here's hoping there'll be a post on Sam's blog tomorrow, headed : Sam Luvin' Bruno Mars

A Merry Martyr

2011-07-21T11:48:00.001+02:00

Don't you love how "casual" dads are about taking care of the kids? How they shrug off our, seemingly, feigned exhaustion at the end of each day because when THEY take care of the kids it's just no fuss at all? Well of course it ain't, because if I could spend the entire day just playing with Sam without having to constantly ensure it's constructive, stimulated play, without having to tidy the house, make the beds, wash bottles, make up a day's formula, drop and fetch the other kids from school, do the washing, etc etc....I would also end each day with a smile and a load of energy to boot!

Still, it was a huge relief to hear that Monday night had gone smoothly with none of the usual hysteria that has become synonymous with Chris putting Sam to bed. Such a relief in fact that I decided to take full advantage of Chris' eagerness to see to Sam for the next couple of days and, in anticipation, had pvr'd a good couple of movies I'd been wanting to watch over the past month or twelve, as well as stocking up on some mags to keep me occupied in between my intended movie marathon while seeing my recovery out in bed! Aaaahhh....the joy of disillusionment. I got home from the hospital just past 11am on Tuesday, made my way to the bedroom...do not look in the kitchen...do not look in the bathroom...do not pass Begin, go straight to jail...uhm, I mean, bed! Do not be THAT Mom, I told myself. The kind of mom that is desperate for some rest but when eventually presented with the opportunity to take it (even if it takes a surgery to get to that point), lets guilt and imagined (hopefully) expectations get the better of her. You know the kind, I think they also go by the name of merry martyr...LOL! By Tuesday evening I had washed Sam's bottles, made his formula, put on the dirty laundry and fed Sam. Do I regret it? Of course! I have now either contracted flu or something similar as I have a sore throat, headache, temp, earache and possibly the most entertaining - continuous sneezing which in turn means continuous nosebleeds. Oh Joy! I am sure at least one full day's rest would have made the world of difference but as I, defeated, removed my pvr'd movies from the playlist and placed my unread mags on the bookshelf I had to admit that I have only myself to blame. Sigh! (Although having Papa Smurf demand that I stay in bed might have done the trick - just a thought for when my tonsils come, C).

As for the procedure itself - all went well or as well as it can go with 10cm+ plugs stuck in your nose and sinus cavity and equally long splints sewn into your nostrils. Thankfully the last sinus plug came out on Thursday and the splints on Monday evening. Those first few breaths of air were AMAZING! I even told Chris it felt like I was breathing in too much oxygen at a time for my lungs to cope with...LOL! (Of course that was over a week ago before I got sick) My post-op nose is still a bit tender and raw but the overall experience was not unpleasant, largely thanks to having a truly compassionate and caring ENT!

Daddy Daycare

2011-07-13T20:55:00.000+02:00

So what was all the fuss about. ON Monday Morning, Nicky said goodbye, I wanted to take her but we were not sure how Sam would take the goodbye at the hospital.Soooo, Sam slept till 8am, woke up with a smile and spent 10 mins talking to me, uuugh cooo aaaa etc and then it hit me, the bottle is not going to walk into the room by itself.

I put Sam in his cot and made sure the sides were up, and ran to the Kitchen, had a quick look at the thesis on the fridge door left there during the night by the Sam fairy,distant cousin of the tooth fairy. REALISED that I'm running 45mins late with Sam's Day plan,but hey Sam's not complaining. The list did help, Sam had every bottle and meal on his menu. Sam even managed to give me not on but two dirty nappies, and they were more than just wet, they had stuff in it.

Sam was just great, he ate and drank everything that was given to him (as per the list). He played, watched TV and did not cry once. OK he cried once, but it was not my fault, I told him not to ride his bike on top of the dining room table.......

Then Brampa and Mommy happened, when visiting Mom in hospital, I got all the suggestions, Maybe Brampa must sleep on a mattress in the room, just in case I don't wake up. We settled on Brampa sleeping in Luke's room and Luke slept in front of the TV. Bramps got up every 45 mins to check on us, but we were just great. I made use of my Dad SuperPowers and was aware of almost ever move Sam made. Sam made sure of it, I had a hand/head/feet in/on/bumped/slapped/kicked my face/ribs/arm the whole night. knew exactly what Sam was doing and were he was. So much for Nicky thinking that I will not wake up for him.

Day 2..... repeat most of Day 1. added we went to fetch Nicky from the hospital and to her surprise Sam was fine, still not sure why she was worried.

But on a Sad note... Nicky does look very sore or as they say in my world "vrek eina" , so I will have some more time to spend with SAM, bring it on, I had fun spending so much time with my little guy.

Sound like a plan?

2011-07-08T23:29:00.000+02:00

Do you know where we were this time, two years ago? We were struggling the most wicked frustrations as Sam's "real" due date, the 8th July, came and went and we were still sitting in hospital after eight weeks with the last week being ventilator-free and the only thing keeping us there being Sam's inability to drink. I remember losing my cool with the nursing staff almost every single day towards the end, when they would do things which I thought were delaying our progress with trying to get Sam to drink, things like giving him a bath just before I arrived to try and breastfeed which of course meant a super sleepy smurf (funny how now a bath seems to re-energise him instead) or when I arrived one morning to find a temp nurse had moved his NG tube from his nose to his mouth!!! Yip - that's sure going to encourage him to swallow! Poor old Dr A...I phoned him every day with one complaint or another. The following Monday I went into his office to complain that, yet again, the NG tube had been put in his mouth. He said "Do you know what Sam the Man needs? He needs to go home!" (He always called Sam, "Sam the Man"). He asked if I was confident enough to go home with the NG tube...I said OF COURSE (have been asked this sort of question a number of times by now). I am not really sure if he was acting in Sam's best interests or his own, in an attempt to avoid any further whining on my part, but does it really matter? Sam was scheduled for an eye examination on the Tuesday and he said that if all went well we could go home within a day or two after that. That very Wednesday as I walked into NICU the nurses met me with huge smiles and asked if I would like to take Sam home...THAT day! The usual protocol was that the night before taking a preemie home the mom had to do a sleep-in, which I obviously hadn't done. I was too scared to ask about it in case this step had been overlooked and by asking I in turn delayed our leaving by another day. Eventually good sense prevailed but I was overjoyed to hear that Dr A had said he was confident I would cope with Sam and needn't do the sleep-in. I quickly phoned Chris and asked if he could leave work, rushed home to get Sam's never-yet-been-used carseat and rushed back to the hospital...just in case Sam's paed changed his mind. Did a couple of really quick practice rounds in front of the nurses for inserting NG tubes and we were off! It was the 15th July, exactly two months since Sam's birth.

WOW! I remember every minute of that day...what Sam was wearing, what I was wearing (okay, this one isn't too difficult because I only had two outfits I could fit into in my post-pregnancy state)...what a thoroughly glorious day! Our little smurf has accomplished so much in these past two years, he has such an incredible personality, so many gorgeous little smurf-erisms, the most enchanting charm...I love him with all my being. Oh, please don't misunderstand, I love all three of my children so and cherish each and every one of them for their own unique characters and spirits. But, as I am sure all SN parents can relate - seeing such a fragile little being struggle so hard to simply stay alive and then struggle to achieve and master abilities and accomplishments we generally take for granted, twinges that love with just a little extra admiration, a little extra awareness and a whole lotta AWE!

One of the blessings so often taken for granted is communication. Although I would absolutely love for Sam to be able to speak to us "normally", especially at times when he is ill and we are struggling to pinpoint the problem, I have always quite appreciated his ability to largely communicate to us what he wants by using different tones with his Sam-glish, his own hand gestures or, more commonly now, taking our hands and deliberately placing it on something he wants or wants us to manipulate, eg. the tv remote control, a book he wants us to read, etc. The past week or so I have really felt, unhappily so, the blatant absence of proper communication with Sam. You see, as mentioned previously, Sam is going through a particular bad case of separation anxiety. If there is enough distraction, it is occasionally overcome, but mostly not. Also mentioned previously, I am going in on Monday morning for procedures on my sinuses and nose. I have been incredibly stressed about this operation, purely out of worrying about Sam and how he is going to be, particularly because I have to stay overnight. (I asked my ENT if we could postpone the tonsillectomy for another time because I can't possibly manage a five/six day "downtime" and was sort of hoping it would mean that I could then come home on Monday afternoon already...but alas not). I am not sure if Sam has picked up on my being extra anxious the past few days but his separation issues have reached newly aggressive heights...the kind which calls for antics such as leopard-crawling through rooms, behind couches, so that he doesn't see me when Chris has managed to momentarily distract him, or doing amusing monkey-like acrobatics over beds in an effort to sneak past him by trying to silently scale the bed as opposed to having him spot me walking by. As humourous as what it is recalling these episodes now (probably some of those you-had-to-be-there moments), it is heart-breaking not being able to explain to him why I am not going to be there when he wakes up on Monday morning or when he goes to sleep on Monday evening and for the twelve/thirteen hours in between. Because of how hysterical he becomes when, for instance, Chris takes him from me just so I can quickly eat a plate of food or something equally trivial, means that we have had to reconsider Chris bringing Sam to see me at all on Monday. I know that perhaps this all might seem a fairly silly challenge to some, especially as I am only going to be away for one night...but you need to personally know our Sam to know how upset and inconsoleable he can become.

We've tried to concoct all sort of plans to remedy Monday's overnight stay, ie. Chris brings Sam to the morning visiting hours, Sam screams hysterically when leaving, resulting in huge amounts of v-wording all over the ward, etc. At the afternoon visit : repeat above procedure (perhaps more elaborately) but add that Chris loudly announces when leaving "Sam and I will see you tonight then!". With any luck all the patients and nurses witness to these episodes will plead my case on my behalf by telling Dr N that I DESPERATELY need to go home! Think it'll work? Nah, me neither. The only thing I can hope for now, other than a miraculous healing of my URT by Sunday, is that I am in so much pain after the op that it completely distracts me from worrying about Sam. A bit warped, I know...but desperate times folks...desperate times!

Time for a subject change before I manage to think up something even more absurd en lieu of a cancellation rather. (Oh please - don't let anything GENUINELY happen to cause me to cancel, in case everyone thinks it's something I planned).

On Wednesday Sam had a Prevenar booster shot which will hopefully strengthen his immune system throughout the remainder of Winter (Hugs & Kisses and a great big THANK YOU to Aunty 'Laine). Yesterday we had a follow up with Dr dT - OP for back, hips, knees, etc. Sam's hip x-rays came back beautiful, even though Dr dT gave us a bit of a startle when he started the conversation with :

Dr dT :  So...do you want the GOOD news or the.....

Me & Brampies : Huh?
{Brampies and I look at each other in despair}
There's a choice? Why's there a choice? What could possibly be wrong? Oh No! What do I ask for first? Good or Bad?

Dr dT :  ...the GOOD news!

Me & Brampies : Okay, what'll it be? Good news or bad news? {Cogs start shifting the gears of our     minds into action....Dr dT's last statement slowly replays in our minds}
Ahaaaaaaaa! The light finally goes on!

Sam's little left foot, however, is still cause for relative concern as a result of the hallux varus (mentioned before I think) and metatarsus adductus. The plan for now is basically to wait until Sam is about five years old, giving the metatarsus adductus time to remedy itself, failing which a procedure will be carried out at the same time the osteotomy is carried out to rectify the hallux varus. Dr dT is pretty hopeful though that the MA will not require surgical intervention and concluded by saying that he is super-pleased with how smurf is doing - his spine looks wonderful, no indications of scoliosis or hyperkhyposis at this point, knees and elbows look great (although Dr dT had to spend a relative amount of time reassuring Brampies that Sam's hyperextending elbows are more frightening for us than what they are for Sam). Dr dT had a look at Sam's little fingers, five of which are unable to straighten/flatten (excluding his two little thumbs, of course). He appeared a little concerned and is going to put a call through to hand-OP to request that our next appointment gets moved up from September.

This morning we were back at Dr B to re-examine Sam's ears. The right ear seems to be progressively on the mend, however his nose is still very inflamed and irritated. We are going to do another seven days with Betnesol, hoping for complete healing, failing which we'll head off to the ENT for a nasal scope. Thankfully, for now though, grommets seem to have been taken off the table. We have Sam's urology appointment coming up the week after next, as well as opthalmology. With regards to the operation to bring his testes down, I was kind of hoping we could couple it with the original plan of just correcting his hallux varus at three years old, but Dr B strongly recommended it gets sorted out ASAP, which is just as well seeing as his little left foot will only be operated on in another three years time now.

OMW - what a long post. I blame it on a busy little smurf, too many doc appointments and shocking energy levels at the end of the day which prevent me from posting shorter, more regular updates. More than likely our next post will have been published by a rather bruised and swollen-faced Mamma!

A sticky situation...

2011-06-30T17:00:00.000+02:00

Okey Dokey...so we've gone from croup, to ear infection, to RSV and now, as officially diagnosed this morning, we also have Glue Ear in Sam's right ear thanks to all the muck provided by the one illness after the other. If anyone ever hears me speak/sign/whisper/mime/appear-to-be thinking these words again "I CANNOT WAIT FOR WINTER" I, personally, give the bearer hereof permission to instantly knock me upside the head without any prior warning or notice of intention to do so.

But it's okay, we've only got like another sixty odd days left until Spring.....H.E.L.P!!!

So, moving swiftly along, the new course of action is another few days on oral cortisone with a cortisone nasal drop as well, whereafter we have a follow up next Friday to reassess the ear pressure and, if there is no or little improvement, we are going the grommet route. I cannot say that I am particularly opposed to Sam having grommets after dealing with Meghan's recurring ear infections basically from birth up until a couple of years ago, specifically the pain she went through when her right eardrum ruptured. The only thing that ever brought her relief were the grommets and we even settled on semi-perm grommets the last time which can stay in for up to three years. But, here's hoping by this time next week we'll have a healthy and completely recovered Smurf crawling around.

Sam's struggle to regain his health over the past two months has led him to seek guidance from not one...not two...but three different Bibles - just to be sure, you undersand!

ET phone home....

2011-06-29T21:36:00.001+02:00

...from Stilbaai :)

We decided a couple of weeks ago to make another short trip to Stilbaai this passed weekend and I, in turn, decided to stay mum about it because of the uncanny twist of irony that always seems to occur every time I blog about something. I was certain that had I mentioned our intentions, by Friday morning Sam's health would deteriorate and we would not be able to go. Well blog post or no blog post, sure enough on Thursday morning Sam woke up screaming...not crying...screaming and carried on like that for a good half an hour. After a very short morning nap, he woke up screaming again so I thought another ear infection for sure and warned Chris that if we had one more such incident, we'd have to change our plans. But Friday morning he woke up full of smiles and beans so off we headed early Saturday morning. Sam tolerated the four hour drive like an angel, even though he only managed a twenty minute nap the entire trip. He drank his way through two bottles along the road and the half a muffin he ate seemed to keep him content as an alternative to trying to make cereal while driving.

I had checked the weather predictions during the course of the week which, as accurate as always, predicted a 60% chance of rain in Stilbaai so we didn't bother taking Sam's stroller with, thinking it would be too miserable to venture outside. Granted, Saturday was a little miserable with occasional bouts of rain or drizzle but Sunday morning dawned relatively pleasant albeit still quite chilly despite the sunshine. Meghan had been begging to go "fishing" for klipvissies so just before 10:00am we headed down to the beach but with Sam so smothered in fleece tops, hoodies and even a towel for extra warmth, that you could hardly make out the little bundle perched on my lap.

Meghan and Uncle & Cousin Hendrik trying to scare the klipvissie out of it's pool as opposed to actually catching it....

...and it actually worked!

But with the klipvissies trying to avoid the cold water and remaining scarce we took a short walk along the beach...

...gaped in disbelief at the crazy folks trying to surf in the f-f-f-r-r-r-e-eeeezing cold water and then headed home for the awesome brunch Oupa had waiting :)

Sam tolerated the drive home again quite well too, with the exception of the last forty or so minutes when he became a little whiny and agitated but nowhere near uncontrollable. In fact, he spent over an hour entertaining himself with the lid of the flask and my barette. He would put the barette into the lid, shake it till it fell out, search for it and then repeat the process over...and over...and over...you get the picture!

Towards the end of last week Sam had begun showing very slight signs of improvement. Even though he was still snoring-choking-apnoeaing his way through every night, it seemed to be easing off just a little but I think we've finally realised the full extent of how weak his immune system is and how important it is to avoid potential triggers regardless of how short or seemingly harmless the exposure is because by this morning he was coughing and vomiting up slime and not only snoring and snorking while asleep or lying down, but even while he's awake and upright.

So it's really quite disheartening that we seem to be going backwards again, with regards to Sam's health. This has been going on now for like five/six weeks and we just don't seem to make any substantial progress. The other problem of course is that with my little procedure coming up on the 11th July (I say "little" with quivering knees and a lump in my throat - a lump not caused by infected tonsils for once) we are leaning more and more heavily towards a postponement. I sometimes wish I could just WILL Sam back to health...don't we all sometimes wish that?

We are still therapy-deprived at the moment. I actually did confirm Sam's PT session for this morning, on Friday, seeing as he seemed to be doing okay but had to phone in at 7:43am this morning...while covered in puke and with a screaming background accompaniant...to cancel. What a totally awesome vision of motherly tranquility and confidence I must have created for our PT :) Although after the number of times Sam's showered our PT and all equipment/accessories within a 2 metre radius with the contents of his tummy, I think they pretty much "get it" by now.

In an attempt to distract you from the rather sorry image I have now created in your minds, I am proud to share that Meghan brought home another great report card achieving 4's for every subject. Why is my tone a little less jubilant that what you'd expect? Because with each evening during the exams ending with Meghan in tears and me sometimes close to it due to utter exasperation at how she could have spent hours upon hours studying but without being able to answer even half of my questions, I asked her to consider how upset she would be if she failed even just one subject or, worse yet, the term and would stress over and over the importance of being properly prepared as the only way to avoid this. Aaahhhmmmm....great theory there, Mom! There's that argument blown out the water! Thank goodness I've a good couple of months to come up with something new...

Welcome Back, Smurf!

2011-06-22T12:26:00.001+02:00

We're still doing the congested nose and occasional coughing fits but for the most part of it, Sam The Conqueror is back in full swing, which means untidying whichever room he happens to be in, playing, watching tv and unrelentlessly terrorising poor Biebie (Meg's kitten). Who could have imagined that such a tiny little smidge of person could wreak so much havoc even though still limited to all fours. Drinking and eating is still a little tricky, what with his blocked nose - I've given up on suctioning him for now because it inevitably ends in the v-word. We have both a Nosefrida and Benny Vac which we use to suction Sam. The Nosefrida is obviously a little more "gentle" but the fact that I am literally sucking Sam's germs into my lungs freaks me out a little. When Sam's mucous levels reach epic proportions, we revert to the Benny Vac, but Brampies is convinced that it is painful for Sam due to all the screaming that always accompanies me using it. So painful that the second you turn the vacuum on Sam starts gagging? Me thinks not. But, just to reassure Brampies I had to do a bit of a weird experiment - yes, you guessed it, I suctioned myself! While it certainly is a really unsettling sensation, I can say firsthand that it is not painful. But with an already low tolerance for unsettling sensations, I decided to limit the Benny Vac-ing as much as possible, so we're relying now on good old Sterimar. If only I could get Sam to blow his nose.

Well, this little smurf motors all over the house on his hands and knees. I think his crawling skills are being super-tuned by his continuously trying to catch both Belle and Biebie...and don't ask me how he manages, but at least thirty/forty times a day he actually does get a hold of them and tries to de-fur them. How he has not ended up with severe teeth or claw marks is beyond me. Belle (being the elder, terribly cantankerous of the two) eventually gets fed up and moves out of reach but Biebie! Poor Biebie! She is so desperate for someone to play with while Meghan is at school that she just keeps coming back for more...and more...and more. Luckily Sam and Biebie hold no grudges against each other and still enjoy playing games together :

Sam manipulating his plastic balls through the bars of the gate for Biebie to chase.

(Never a missed opportunity for therapy, folks.)

Taking a breather :)

(Although Biebie watches Sam's hands carefully so she knows when to make a run for it)

I am slightly wary that my little smurf is fact becoming a tv addict. He is doing great balancing on his knees at the moment (although almost refuses to be in a "walking" position anymore) and will

sit like this and watch Brainy Baby for ages.

Completely zoned out!

Another one bites the dust - aaarrrgggghhhh!

I have tried actually sitting with him and working through the colour, number, alphabet, etc games they demonstrate in the dvd, but Sam just won't have it. First of all, if the tv is on you can forget diverting his attention. And when it is off? He continuously points at it and the remote!

A friend asked yesterday how Sam was doing with OT. I said that unfortunately with his being ill we've basically been therapy-deprived over the past few weeks and that although he's definitely feeling a little more confident venturing out and about the house, he is still refusing to do things like hold his bottle or handle his food, chips, etc. Barely an hour later I was trying to cut a packet of Niknaks off a strip to give to him but at the same time Sam was trying to push close the drawer I was working in. In my haste to free the chips quickly in order to avoid Sam banging his fingers in the drawer, I cut incorrectly and the entire packet of chips went flying all over Sam and the floor. I giggled to myself and thought "Now if Sam was any normal child, he'd be picking the Niknaks up and eating them right off the floor before I could clean them up!"

Sam gingerly picked up a Niknak, studied it for a second....and promptly put it in his mouth!

Believing - We Receive

2011-06-17T13:05:00.000+02:00

Life's resources have been a little on the low side lately...physical resources are low because fighting a particularly aggressive bout of sinusitis/tonsilitis makes caring for a really sick little smurf fairly tricky, financial resources are low because dealing with ongoing illnesses which in turn call for ongoing doctors' appointments and medication with a medical aid which funds were exhausted about two months ago is also fairly tricky (especially when looking at Sam's scheduled follow-ups with specialists for the next couple of months, not to mention his intervention therapies) and spiritual resources are low as well as a result of not being able to regularly attend services or even find a gap during the day for some "alone" time for prayers or Bible reading. I've tried leaving it till I go to bed, but this hasn't proven too successful :) The danger in this is that the longer you're without spiritual influence, the more often thoughts of "Well, what's the point anyway?" come sneaking their nasty little way in.

So, on Wednesday, I decided it was time to put a stop to this downward spiral and set myself a goal, to somehow manage at least two prayer sessions during the course of the day and to have read at least one Bible passage. The prayer sessions were a little easier than anticipated and the Bible reading took place at the kitchen counter while simultaneously trying to gulp down a sarmie and make Sam a bottle, while Brampies battled with a particulary clingy Sam for a few minutes. Seeing as I have missed a good few daily readings, I decided to start on 15 June and work my way back (it made sense at the time) and I managed to work through the 14 June as well.

A quick side-step : It is important to note at this point that part of my petitions earlier that morning was a request for Him to at least acknowledge that He hears our prayers and hasn't completely forsaken us.

As I was about to head out of the kitchen, I glimpsed the devotional for 13 June. It said :

"Believing - We Receive

If anyone is thirsty, he should come to Me and drink (Jn 7:37)

Are you thirsty? Then drink. "Now this is the confidence we have before Him: whenever we ask anything according to His will, He hears us. And if we know that He hears whatever we ask, we know that we have what we have asked Him or" (Jn 5:14-15). Here are the principles:

Confidence - "the confidence we have before Him:"
Conversing - "we ask anything"
Condition - "according to His will"
Conviction- "we know that He hears whatever we ask."
Consequence- "we know that we have."

I thought - here's the acknowledgement I was asking for.

A short while later I received a text message from Sammy's great-aunty Anthea. She said that she'd put in a request for us to be considered by two of our local radio stations for their respective "random acts of kindness" programs.

I thought - here's the acknowledgement I was asking for.

A couple of hours later our minister showed up for an impromptu visit to see how Sam was doing and to pray for us.

I knew - He hears us.

Now, there's been no miraculous healing going on overnight, no huge lump sum of money anonymously dumped into our bank accounts...what there has been is a slow but steady improvement of Sam's health over the past two days and the comforting knowledge that, despite the saying that when times are hard friends/family are few, we still have family who care enough about us to put themselves out there in an attempt to ease our burdens.

So, Sam is still coughing terribly and his nose may as well have been glued shut with cement, but he's been wanting to play more as opposed to just lying on my lap for hours on end and he's even been rewarding us with that good ol' smurf charm and laughter. I am not expecting much relief for myself until 11 July, when I will be going under for the ENT procedures mentioned previously but as long as Sam is doing better, it's all good. I know my insistance at trying to treat Sam at home may have seemed incredibly unreasonable...not to mention the inconvenience of the "please help" emails I had to send Sam's paed when it looked like we were losing the battle (Dr B's inconvenience, not mine) but that's why I keep stressing the importance of surrounding ourselves with specialists/doctors who can relate to your circumstances on an emotional level, as well as a professional level. Let me give you a prime example : at Dr B's office on Friday, when about to examine Sam, I asked him if he wanted me to remove Sam's shirt and vest. He said it's best to keep both on because Sam will probably moan. I thought - Nah, it's warm in here and Sam seems pretty calm and settled, let me take the shirt off so that Dr B can examine him more comfortably. What do you think happened? Sam started squirming and whining in protest! The lesson? When your doc knows your child as well (and very occasionally better) than you do, you're in good hands :)

In the midst of all our chaos, Sam has had a haircut...well - half a haircut at least (the reason why there's only a front view..hee hee).

BEFORE :

and AFTER

Okay, so I was wrong!

2011-06-13T12:01:00.000+02:00

So, there's a whole new ailment bugging Smurf...in the form of a little RSV with a touch of pneumonia thrown in for that "Aaawwwhhhh" effect. Firstly, I'd like to say a hearty THANK YOU to our medical aid service provider (for fear of some kind of legal action I will refrain from outrightly revealing their name, but will tell you that there is a channel on DSTV with the same name - now I know our South African readers will follow) who, even though born with lung membrane disease and having a congenital disorder which makes him susceptible to respiratory disease, do not feel that Samuel is a candidate for another course of Synergis,which course consists of five/six injections costing approximately R10,000.00 EACH!!! So affordable for the average family off the street.

Secondly, I would like to thank whoever it is that is responsible for instilling the "Oh Woe Is Me" virus within Luke's system, which virus somehow interpreted me asking him to try and limit his presence in the living areas of the house in order to prevent him contaminating the rest of us with his RSV and bronchopneumonia, as a personal attack on his character and a completey unjustified attempt to punish him for some unknown reason and, thereore, rendered my request as completely invalid. So loving life with a teenager at the moment...thankfully we've only sixteen months left until we're done with this stage. Oh No! Hang on, he's male...better add another five years on to that! LOL! Only kidding - just a bit of tongue-in-cheek there, guys!

All jokes aside, Sammy is one sick little smurf. Dr B advised, with written instruction I might add (gotta love the guy) that should there be no improvement by Saturday afternoon we should rather take Sam through to be admitted. However, even though it appeared at numerous times as though Sam was actually getting worse, we decided to push through at home because with a little man whose sensory defensiveness is so severe that it effects even his gut, the trauma of a hospital stay can sometimes completely obliterate the benefits. I have resigned myself to a decision that, should there be no improvement by this evening, we should take him in to be admitted.

Oh, and have I mentioned the fun we'll be having in a couple of weeks time? Not? Well, here it goes....I am, so far, undergoing a tonsillectomy and a little procedure to re-shape the cartilage in my nose in the hope of trying to overcome what has effectively been an uninterrupted, sixteen-month-old battle with sinusitis and tonsilitis. I underwent a CAT scan this morning to determine whether I have something funky going on in my sinus cavities as well, which remedies will be added to the procedure. My ENT feels that having my tonsils out though is a must as they are making my whole system toxic. I was advised years ago (like about twelve or so, but whose counting) to have them taken out, but after hearing from a friend how extremely painful it was to have it done as an adult decided that a twenty-five year old woman having a tonsillectomy seemed far more inconvenient than a prolonged relationship with antibiotics. Now I am thirty-seven year old woman having a tonsillectomy and thinking what a jack@** I was!

Hi-Ho, Hi-Ho.......it's off to the paed we go!

2011-06-10T11:10:00.000+02:00

With a temp too high,
And a mournful cry!
Hi-Ho, Hi-Ho, Hi-Ho,Hi-Ho!

Four doctor's visits in four weeks and one day?
For what appears to be the same ailment?
Gotta be some kinda record, right?

You'll never guess......

2011-06-09T12:56:00.001+02:00

...what I had for supper last night, guys!

Cottage Pie!

No, Gerber has not added (unfortunately) a tasty new flavour to their range. And, NO, Mom did not try one of her previous stunts by sticking a normal meal through a blender...YUCK! (Have you ever had liquidised mac and cheese? Not pretty!) This was normal....here, let me say it again...NORMAL...cottage pie! With normal ground beef, normal pieces of carrots and peas and, yes, even rice. And I loved it! What I loved even more though was that at like thirty second intervals at least one member of the family would come and stare at me eating and exclaim in delight that I was actually eating the cottage pie. Now, I know Mom's not the best cook in town, but really guys...her food's not THAT bad that you need such intense moral support. Mmmm...okay, maybe it wasn't really the cottage pie that was the issue coz I kinda remember the same reaction when sharing Mom's banana (un-pureed of course) with her earlier in the day. I am so loving LOVING food right now!

I am also quite thrilled that I could bring a bit of awesome-ness into the house though because everyone's really worried that, even though I've finished my antibiotics and Celastamine already, I am not only not 100% healthy yet but seem to be getting sick again. But what can a kid do, right? Almost everyone else in the house is still ill so my little antibodies are fighting their socks off trying to get me healthy with all the germs floating around in here. It does, at least, make for interesting snoring competitions at night with Pappa Smurf!

Hugs & Kisses from your friend, Sam
xox

WORDLESS WEDNESDAY!

2011-06-08T21:55:00.000+02:00

The lengths we go to, to coax a smile from our Smurf!

(or would that be "the lengths we get grandparents to go to, to coax a smile")

Still trying to catch up!

2011-06-06T11:32:00.000+02:00

Sam completed his course of antbiotics and Celastamine last night. We almost didn't make it with the Celastamine after the number of times Sam threw up his medicine on the first day, but thankfully our local pharmacist (who knows us so well by now that as soon as they notice us walking in, they already start going to the shelves to collect Sam's meds) quite happily gave us a "top up" to complete the course.

So, our smurf appears to be feeling a little better but still, something seems to be bugging him. He is extremely clingy and his laughter and smiles come a little more seldom now. It could well be his teeth (Yes! Those molars and eye-teeth are still NOT completely through, almost six months down the line) as he is constantly mining in his mouth. It's really quite frustrating not being able to have him tell us what's wrong, although this isn't always the case. When Sam got really ill, I started putting him in our bed at night so that I could try and keep him propped up on his pillows to allow for some sort of less-laboured breathing and also to monitor his apnoea's. Now that he's been feeling a little better, we have been putting him down in his cot again at night (after walking him to sleep first, of course) but without fail, every night, he wakes up roughly at about 10:00pm. I told Chris I am sure it's because he suddenly realises that he's not in our bed, so promptly put him in with me. I could see Chris was a little sceptical about my theory and so when he woke up last Thursday evening, Chris went instead to pick up and then tried to walk him back to sleep. Little Conqueror Smurf was having none of it though and firmly pointed with his little crooked finger to the bed!!! (Yay Me!) As soon as Chris put Sam in the bed, he rolled onto his tummy and went off back to sleep.

By the way, I don't refer to his little fingers as "crooked" without good reason. Apart from Sam's angulated thumbs, we've noticed that (with the exception of three of his fingers) all of Sam's fingers seem to be slightly "different". His two index fingers curve outwards (almost as if they also want to angulate) while the others seem unable to lay flat. In other words, if you put his hand on a flat surface you cannot press down on five of the fingers as even the knuckles seem to be "humped". I keep meaning to Facebook our RTS family to ask if any other RTS sweeties have this problem, but you know the story by now about my mind-like-a-sieve problem! Anyway, I have to....HAVE to....remember to ask hand-orthopaed about this at Sam's next appointmet, which is in July....uhhmmmm....or is that December? Hee Hee!

We are still trying to catch up on Sam's weight, which dropped from 10.6kg to 10.1kg with his being ill, but his appetite has definitely improved and he is still doing well with tolerating mixed-textured food. He even ate a bowl of freshly cooked veggies last night.

Sam and Ouma, when they came to visit last week (Ouma and Oupa, that is)

The SUPER cool gate Uncle Hendrik and Oupa built and installed for us, which creates an awesome little play area for Sam while I can do what I need to do in the kitchen.

And an equally SUPER cool tractor, which Oupa made for Sam.

Note the name on the side!

Oh-so Handsome cousins, Hendrik and Dirk, came to visit yesterday. Sam was a little miz, as mentioned, and wasn't too keen to pose for a pic!

(I don't have a clue what that little circle of light is by Sam's head,

only came up on this one photo - weird)

But we eventually managed something remotely resembling a smile!

Now if only we could get all three boys looking in the same direction :)

Third time lucky!

2011-06-01T11:49:00.000+02:00

After Sam's croup diagnosis last Thursday and with a little help from some of the prescribed treatments, Sam's symptoms seemed to ease off a tiny bit...with "tiny" being an understatement. I am not sure about Sam, but I am pretty much experiencing a decent dose of cabin fever having being basically restricted to the house with Sam being so sick, with the exception of the occasional trip to fetch Meg from school (although Brampies has pretty much taken on both Meg's and Luke's to-ing and fro-ing to school/college for now) and our doctors' appointments. Thankfully Meg's hockey tournament was cancelled on Saturday (Did I say "thankfully"? At least it would have meant some contact with the outside world) but we unfortunately also missed out on Rian Smurf's birthday party on Sunday, as well as having to subject Ouma and Oupa to a pretty dismal visit consisting of few outings and a house full of patients.

Yesterday was Chris' birthday and how did we celebrate? With a trip to the paediatrician after yet another difficult night with Sam, which ended with him waking before 5am screaming in pain. The remainder of the day was spent with endless v-word cleanups thanks to Sam seeming completely incapable of keeping any food or liquid in his stomach, including his meds! Aaaarrrgggghhhhh!

The upside (and yes, surprisingly enough, there was one) was the paediatrician's appointment. For more than two weeks now (and two GP visits) I have insisted that there was something more serious going on with Sam, other than a cold and even the croup. But there has been a slightly confusing piece to the puzzle which has managed to throw the other docs off - being that not once during this period did Sam have a fever. Admittedly this is rather strange seeing that Sam's core body temp is fairly high and always, without fail, the first sign of serious infection is that he gets a fever...sometimes as early on as two weeks before the onset of any other symptoms. Only once over the past two weeks has his temp even managed to reach over 37ºc (with his "norm" being about 37.2ºc) and that was yesterday morning, otherwise it's been hovering between 35.5ºc and 36.6ºc, believe it or not.

Now, I am pretty sure that Sam has in fact been suffering with some cabin fever himself, because he LOVED having to hang around in the waiting room at Dr S's office and was as bubbly and joyful as always...pretty remarkable when we found out what's been bugging him. When looking into Sam's ears Dr S started saying things like "Ouch" and "Shame" which we figured either meant Dr S's little light examining-thingy was causing him some sort of pain...or he was reacting in sympathy to what he saw. It turned out to be the latter. He said on a scale of 1-10 with 10 being a burst eardrum, Sam's left ear was an 8 and Sam's right ear a 9.5!!! A-ha! F.I.N.A.L.L.Y! By yesterday morning I was really starting to feel quite despondent and hopelessly frustrated because I could see that there was something serious ailing Sam but after two pretty "wasted" doc appointments, wondered if maybe I was really becoming as unnecessarily pedantic as what, I am certain, some people have started believing I am.

Unfortunatley, the high of finally knowing what was wrong wore of soon enough after two failed attempts of trying to get the antibiotic (non-penicillen for now, until we've confirmed Sam's allergy) and celestamine to stay in Sam's tummy, not to mention anything remotely similar to food or liquid. No matter how little we administered at a time, regardless of any amount of dancing and singing to try and distract him from the urge to throw up....everything came spewing out anyway. Eventually though just after 7pm we managed to get half a dose of both the antibiotic and celestamine in, which might have been due to an effectively administered pain suppository by Pappa Smurf which had Sam back to his babbly, joyful self. Sam even managed to take in a little Cera-lyte before bed and for the first time in more than two weeks had the closest thing vaguely resembling a decent night's sleep.

Some random pics taken sometime over the last couple of weeks.....

Sam is never as happy and content as when there is some sort of chocolate treat melting in his mouth! Of course, with his being ill we've had to avoid the chocolate for now but I can almost hear him giggling in delight when next he is allowed to indulge!

Aunty Diane and her Sunday school class made this crown for Sam a couple of weeks ago! It just so happened to perfectly match his little top!

About a year ago, at the very least, we found a dvd at a local factory toy shop called Brainy Baby. Now, from an adult's perspective, the dvd is pretty amateurish (hope I can't get into trouble by saying that) but, with all of the little games/songs/counting, etc being carried out by children (mostly between the ages of 1 and 4) Samuel adores....as in A.D.O.R.E.S the dvd and watches it at least three or four times EVERY day! Sometimes non-stop! He waves when the children wave (the pic above), smiles when they smile, does a little squirmey-jiggy type thing when the dizzy bird puppets dance and grabs my hand to either sign the alphabet next to the screen when it comes on or quickly display his foam set of numbers next to the screen when the counting comes on!

Relaxing on Pappa Smurf while watching!

Completely and totally mesmerised!

The best R29.00 we ever spent!!!!

The V-Word Slump

2011-05-26T22:10:00.000+02:00

Over the past couple of weeks I cannot tell you how many times I have mentioned my surprise that Sam has been so healthy for so long (TSC surgery not included under "unhealthy"), especially as everyone in our house has done a fair round with flu/bronchitis, etc. I even literally touched wood a couple of times when saying it...because my experiences tell me this works? As posted recently, I had Sam at the doc last Thursday because, after all his difficulty breathing, etc at night, I was pretty convinced there HAD to be something brewing somewhere, be it nose, ears, throat, lungs! I was wrong...well, at that point in time at least. Sam's mucous build-up progressively worsened, albeit remaining clear, and without a fever. By yesterday, after several sleepless nights, he also developed an ominous croup-sounding cough but still no fever. Now, what could be more trying than taking care of a sick and miserable little smurf? Taking care of him while YOU are also sick and miserable!! There has been very little actual sleeping taking place in our home at night, both Meg and, especially, Luke cough through a large part of the night and in our bedroom Chris' sleep is alternately disrupted by first Sam's coughing-cum-choking episodes and then my own coughing and spluttering. Add a whole lot of assignments and tests in prep for next week's exams to that and you've got yourself a surefire recipe for AAAAaaaaaarrrrrrrggggggggghhhhhhhhhhhhh! [Rolls eyes and lashes tongue out in fake suffocating-motion for emphasis]

I have this really annoying tendency to rush Sam off to the doc the split second I notice something which might be a potential illness and always with the same result - that there is little they can do besides some occasional symptomatic relief, unless it becomes a full-blown infection, in which case they will only then prescribe an antibiotic. I really do know and believe this is always the right course of action, yet cannot seem to break this premature behaviour even though I know there is little the docs can do and even find myself starting off the consultations by confessing that I have perhaps rushed in a little too soon. The result? Inevitably we will land up back at the doctor a few days later with a full-blown pneumonia or viral infection which can then finally be treated. So, after yet another "wasted" appt last Thursday I was not sure when Sam's symptoms changed yesterday, whether I should make another appointment or wait it out until there was a devastating fever or at least some green mucous to work with. The thing is Sam's fevers tend to come flying in suddenly at ridiculous temperatures instead of building up slowly and usually results in a hospital stay and with Meg having a hockey tournament on Saturday morning, Sam's Ouma and Oupa coming to visit and Chris' birthday on Tuesday I thought, perhaps....just perhaps.....this time we can catch whatever-it-is before we're already on our way to the hospital's emergency unit in the middle of the night.

Well, would you believe that we got it right this time? (Well, for now at least) I gingerly made another doctor's appointment this morning where we discovered that the whatever-it-is happens to be another bout of croup, but still in the fairly early stages which is why there is no fever yet. With the help of an antibiotic nasal ointment to clear the irritation there, an eye drop for Sam's slightly gooey eyes and, most importantly, some cortisone to neb Sam with we should, with loads of luck, be able to avoid the hospital this time. Or so you'd think, right? Another touch-that-wood bit of thankfulness was Sam's scarce v-wording. Note I say "was". What with the coughing and Victoria-Falls-like post nasal drip happening at the back of Sam's throat the gag reflex and, hence, v-wording are back with a vengeance, savouring its most dramatic appearances for when I have to try and neb him so, so far today I have been vomitted on three times (I can say the word "vomit" now because I know I can't jinx something that is still happening) with one particularly pleasant throw-up taking place in the car again, while waiting for Meg outside school. Almost as delightful as the throw-up that took place about five minutes after taking Sam out of the bath to clean him from the first throw-up.

You know, we have been through a lot with Sam...the surgeries, pneumonia's, kidney and bladder infection, seizures, developmental delays...yet nothing destroys my spirit like the vomitting. I can't explain it, it's like I see it as a personal attack on me...my ultimate enemy! Of course, as I type this I realise how silly that sounds but I guarantee you when it happens again tomorrow and I sit there, not only covered in vomit but also in frustration at the nutrition and medication painfully administered but which Sam would have just expelled from his tummy, in resignation at losing another battle to the vomtting and, the real issue at hand I dare suggest, the fear that I cannot do this and that I am failing Sam, then it doesn't feel so silly anymore...just really sad.

On a high-note, particularly high in actual fact, Chris underwent a rigorous appointment with the cardiologist on Monday and although Chris' cholesterol levels are dangerously high at the moment (but not nearly as high as what the cost of appointment did to Chris' blood pressure) there seems no need for any major medical intervention at this point, provided Chris is prepared to make a drastic change to the amount of exercise he gets at the moment (so easy to say for someone not living with our feisty and endlessly demanding little smurf) and, more importantly, Chris' diet. Poor Chris! We are not particularly healthy-eaters in our home and love decadent treats but still, for Chris' sake, are all going to make a conscious effort to adapt our diets in order to make it easier (well, most of us that is - thanks for the jam donuts, apple crumble & cream and potato crisps so far this week Brampies). The scary thing is that, when I really sit and consider it, my diet is shocking. Mostly during the day I tend to grab whatever is quick and easy to shove into my mouth, usually consisting of cereal bars, rusks, biscuits, etc and I've never bothered to even have my cholesterol checked purely because of classic stereotype misconception that it's usually the more mature males that are afflicted by dangerous cholesterol. I'm surprised I haven't been slapped in the face with a heart-attack yet? Oh no! Quick.....TOUCH WOOD!

Aaaannnndddd....a few steps forward again :)

2011-05-20T16:25:00.001+02:00

Remember me whinging roughly about fourteen months ago about our pc crashing and losing not only most of the pics we’d taken over the last four years, but also all my emails and email addy’s due to a teeny weeny oversight on my hubby’s part? Well, if you don’t remember, I certainly do. So you can imagine my horror when, on Tuesday morning, I put on the fourteen-month-old pc we’d subsequently purchased only to see it get caught up in the same restart loop the previous one went through when it crashed! Oh my fragile heart! Meghan and I mourned the loss of our respective Sim-families we were sure we’d lose through the pc’s breakdown. On Wednesday was a national voting day here in SA, so after going and making our mark (or marks to be exact) we quickly drove by the computer place and, luckily, it turns out it was just the pc’s power supply which died. I say luckily, but it cost a pretty penny to have the power supply replaced and I am so hoping that this one manages to exist longer than fourteen months.

On the subject of voting, our little Conqueror Smurf has started becoming extremely strong-willed and often tests our boundaries with regards to who’s actually in control…and of course it’s him. At the voting station on Wed, he refused to offer up my ID document for scanning in order for me to vote, so we had to perform acrobatics to have the lady scan my ID without Sam letting go. At the shops a couple of days ago I bought him a packet of marshmallows to entertain himself with while I quickly gathered my purchases together and again he refused to release the packet of sweets for the cashier to ring up and when I eventually wrestled them out of his hand, he started screaming blue murder. He is extremely adamant about what he wants and, non-verbal or not, makes his feelings inexplicably known. We take the bad along with some good though because, even though it makes handling him in public places, in particular, pretty challenging, the fact that he so clearly expresses what he wants using only hand-gestures and singing/grunting/Sam-glish with the occasional tantrum thrown in when additional emphasis is required, is fairly encouraging…in a stressful, zany kinda way.

Other than his unique way of communicating, Sam seems to be daily acquiring new skills again, in addition to having regained his sitting ability. He is still displaying quite severe bouts of startling when I first put him down on the floor to, for instance, play…but the attraction of whatever toy is lying nearby soon overpowers his feeling threatened and we’ve had no additional bumps on the head since my last post about this. He loves…as in ADORES…books and every mealtime, at the least, is an opportunity to go through a few books and look at pictures, point items out, clearly say words, etc. Of course, these books all involve animals mostly, or children at the very least…two things which he eagerly interacts with. So for a few days I concentrated on one particular thing, ie. Pointing out the dogs’ eye in his Dog Peek-a-boo book, and every day I would try and ask him to show mommy the dog’s eyes and by last week he was able to point out the dogs’ eyes. So we remained on that newly learnt skill for a few days and then I asked him if he could point out Mommy’s eyes…which to our delight he did…and then had him point out Barney’s eyes, Daddy’s eyes, etc so that he definitely understand the concept of “eyes” now and also understands that they are something not only unique to dogs  We are now concentrating on “nose” and for the first time this morning he clearly pointed out my nose. He recognizes several items in his Baby’s First Word Book and when you ask him to, can point them out, for eg. Baby, dog, cat, cow. Sometimes he has such an amazing awareness of what is going on around him that it temporarily stuns me because firstly, he sometimes seems more “present” than what Luke and Meg were at his age and secondly, because it is just so unexpected. He has such an incredible understanding of what he is doing like when he is going to do something “naughty” like throw whatever’s lying on the bed onto the floor, he’ll choose an item, look straight into your eyes, shake his head, throw the item and then look at you and laugh that mischievous, shoulder-hugging giggle. Chris and I were sitting with him on the bed this evening, after a multi-handed struggle to dress him after his bath, which bath also ended in wailing protest, while he amused himself with throwing all of our things “overboard” and, with loving tears in our eyes said that, we could not imagine our lives without him. Even though there are so many rough and challenging moments, his remarkable little personality just kinda makes it all worthwhile. Even after that, while I tried unsuccessfully to walk him to sleep for half an hour while he physically fought me to avoid his dreaded slumber, he eventually caved in and moments before falling asleep blessed me with some “ooohhhiinggg” and “aaahhhiiingggg” and a little giggle and then promptly fell fast asleep. Well, at least I think it was aimed at me because by that time his 10.6kg body is dangling at an unimaginable angle from my arms, at great detriment to my poor back, while he strains to keep sight of the ceiling fan…so his pre-slumber serenade could well have been meant for the fan. Nope, we’re being positive right now, so conclude that it was meant for me.

On the health-front, as mentioned previously, we’ve all been battling to fight off the flu or whatever other respiratory ailment has been trying to infiltrate our systems. At this present moment, both Luke, Chris’s and Meghan’s systems have caved, particularly Meghan’s, who has spent the last two nights coughing her way through the most of it. I was convinced that Samuel was well on his way down this path as for the past couple of weeks his OSA is back in full force and effect and he seems quite severely congested at night. Chris, for far more serious reasons, had a doctor’s appointment this morning so I took Sam with and asked him to check Sam out, convinced that he was going to confirm some tonsillitis or a viral infection at the very least, but surprisingly he reported that all Sam’s usually compromised areas (lungs, throat, nose, etc) all look good. So the only conclusion we could come up with is the same reason for the last particularly severe bout of OSA, being the reflux, with the now thinner consistency milk causing excess mucous as he refluxes during the night. Sam’s reflux is still pretty severe and at least twice a day you will hear him refluxing – it makes quite a distinct, inwardly-hiccupping kinda sound…just thankfully without the v-wording for now. He also has actual hiccups countless times during the day so it appears that, although many of Sam’s RTS brothers and sisters outgrow their reflux by the age of one or two, Sam is not going to follow this trend. He has been extremely adventurous lately though with trying out differently textured foods and has, over the past couple of days, eaten some pork sausage (not pureed, obviously), toast, digestive biscuit, skinned orange, French fry/chip and some Milo cereal (although I left this soaking in the milk for quite some time to make the cereal pretty soggy).

The main reason why Sam piggy-backed on Chris’s appointment at the doctor"s was that Chris has been experiencing some pretty distressing chest pains over the past few weeks, which pains worsened to a pretty scary level yesterday afternoon when, while taking Sam for a walk, he and Meg decided to have an impromptu race. The doc had Chris do some cycling for him so that he could monitor his heart rate, etc and after noticing an unusual pattern has referred Chris to a cardiologist with whom we could only get an appointment on Monday. So we wait anxiously for Monday’s appointment and pray that whatever is causing the problem, is not too serious (although are any heart problems “not too serious”?)

Happy 2nd Birthday Sam and way....WAY....too many pics!

2011-05-16T22:05:00.001+02:00

And when I say "way too many", I mean like in W.A.Y. too many. And I've only posted about a fraction of them.

So our little Conqueror Smurf is officially (as at 5:24pm today) Two Years old and One Day. We toyed with the idea of throwing him a proper party but thought it best to leave that until a time when he can really grasp the whole "it's my birthday" concept. So instead, celebrated with a little get-together with our extended family, which was just as lovely. And without any further ado....the pics.

Ooohhhh...look, Mom! An envelope!

Ooohhh...look Mom, a card!

Okay, now as much as I love birthday cards, the rest of these goodies are starting to look so much more interesting. Here Mom, you hold this while I dig in!

Yay, a xylophone from Aunty Cammy & Uncle Damian. Two of my favourite things wrapped up in one...banging and music, although these stick things look far more complicated than my plastic boats/cups.

Seriously Uncle D? This is what I gotta use to hit it with?

Mmmm...okay, lets try one stick-thing and one toy guitar.

I say phooey to the stick-thing, lets go with the guitar.

Oh my goodness folks, I cannot tell you how many of these pics us kids had to pose for.

There were more flashes than at a fashion shoot. Well, it all started out kinda fun.....

But could ya blame a guy for getting a little distracted?

Chrisna, Meg and Meg!

Our two Meg's!

The "naughty corner"

It took longer to get this bunch to sit still than the kids!

At long last, the moment I was waiting for!

No, not the blowing out of the candles...yes, all two of them.

Quick guys, help me get rid of this flame...

...so that Brampies/Oom Oupa can cut the cake....

...so that I can eat it!!!! Yay, delish!

This would've been a great family pic save for the teenager who was making like a bat

(and hiding in his cave)

Now you KNOW you've thrown an epic party when it's been attended by none other than Frikkie Bellville!

And what's even better than a xylophone?

Why, a floating xylophone of course!

Once Luke felt safe from the uncool, photo-taking adults he ventured out into the light for a little guitar instruction from the Birthday Boy!

(Boy, aren't teenagers loads of fun?)

And some random pics we took of our little smurf recently!

Happy Birthday Samuel!

You are such an amazing inspiration to us,

Through each illness, surgery, challenge and trial,

your spirit remains strong and passionate.

We cannot imagine a world without your giggling and uncontrollable laughter,

Without your sweet voice,

Without your love,

Without your wisdom,

Without your joy,

Without your many Sam-erisms,

Without the lessons you teach us daily,

We cannot imagine a world without YOU!

Caught in the act....

2011-05-12T20:26:00.000+02:00

The second I put Sam on the floor in our bedroom, he makes a beeline for the en-suite to immediately get to work on throwing his stacking cups into the shower. What, you might ask, could he possibly find so entertaining about that? I have not the foggiest clue! In the beginning he would spend a good few minutes first banging the cups on all the tiles, which did make at least a little sense what with his OCD banging of things...but now he just goes straight to the "main attraction". Guess I should be glad that he can't yet reach the toilet as this can only be an indication of what's still to come :)

The past few days have had a bitter-sweet tone to them as we near Sam's 2nd Birthday (on Sunday). While it's awesome to think back on all the challenges and trials we've faced and conquered over the last twenty-four months, looking ahead at the future challenges and trials lining up over the next seventy-something years is a little daunting! Who'm I kidding? It's just plain terrifying...the thought of what's to come, that is, and not the thought of me being one-hundred-and-seven years old. Actually, that IS pretty terrifying too!! Anyway, moving swiftly along....

Having this ongoing, internal struggle about where is the "right place" for your head to be is just simply exhausting. Don't expect too little from Sam for fear of under-stimulating him. Don't expect too much from Sam for fear of frustrating and disappointing both him and us when overly-optimistic goals are not achieved. How do you figure out the correct balance? Are WE (Chris and I) capable of figuring out the correct balance? Is there a correct balance? Every now and again I believe my head to be in that "right place" and then something...or more likely, somethingS, go a little differently to what I had envisioned and I just lose my place and occasionally, like now, it takes some time to find my way back there. I think the first step I took in that direction was (as mentioned in my previous post) completely aborting this whole idealistic notion that we as a family and as individuals are heading towards this wonderful, highly anticipated, victorious utopia over the battle that is RTS where we will one day eventually function as a "normal" family again. This is not at all to say that I have not yet accepted my son as being disabled/differently-abled, but merely that I have not yet found peace in mastering the "perfect" way to mother, nurture and prosper my disabled/differently-abled son. The good news is that, usually (fingers crossed), these low days seem to fix themselves as soon as whatever trying issue we are dealing with at that time, also seems to lessen or disappear. For example, like the fact that hearing constantly about how our RTS sweeties are prone to temporarily losing one or more abilities/skills once a new one is mastered, does still not quite prepare you for when your little smurf finally learns to crawl but then somehow loses the ability to sit unsupported! I mean, really? It's not like he has THAT many skills to play with in the first place...couldn't he have temporarily lost the ability to gag? Hey, I'd genuinely settle for even a TEMPORARY recession on that one. Or how about the swift hand co-ordination he masters when adeptly pinching a handful of hair? I could most certainly have come up with way more creative abilities to offer up for a short time. But, alas, it is apparently not up to me so for now we have had to resort back to propping him up with cushions when seated on the floor after him having bumped his head quite severely on three different occasions over the past few days, when he just seems to forget that he can actually sit and flops backwards. It's really quite heartbreaking and makes you begin to fear even bigger milestones, like walking, in case they come with just as large regressions.

But enough depressing regressing for now :)

In the midst of all this doom and gloom, conqueror smurf is still making some headway at least in other areas, aside from throwing his toys into the shower! A while ago I pursued sign language quite aggressively with Sam but despite all my efforts, he seemed to show little aptitude for it. Recently, however, he gave me a clear indication that he might now be ready for us to try again when, after watching the Tweenies perform "Old Macdonald" for about the fiftieth time in a row, he imitated quite distinctly their actions (which are almost identical to the actual signs) for duck and cow. He also automatically assumes the two-fingered piano pose the second you say the word "chopstix" to him (thanks Barney) and will politely commence a very charming rendition of the song, air-piano style! The only snag here is that Sam cannot lift his arms even up to shoulder height so you have to watch impeccably to determine whether he is doing the action for chopstix or for cow, as there is barely a two centimetre distance differentiating between the two.

As far as therapies go, we are still concentrating on OT at the moment as it really does seem to be having a huge impact on Sam's SID. There has been a slight setback after Sam's three falls, where he has become a little fearful again of being placed next to certain objects, etc. but hopefully we'll move through this quickly. It is still quite frustrating having to juggle, due to financial restraints, between which of Sam's therapies he requires the most at that given time and it is something that I believe greatly effects how you feel about your competency as a parent so it was with a little bashfulness and quite a sad heart this morning that I had to advise Pippa (Sam's OT) that I would have to replace at least one of Sam's weekly OT sessions with a PT session soon. I am currently reading (or trying to) Martha Beck's "Expecting Adam" and have recently read through a passage where she writes some angels are invisible, many aren't. Well, Pippa is one of those that aren't invisible because, without a moment's hesitation, she told me that as Sam is doing so well with OT at the moment and it is obviously having a wonderful impact on him, she would hate for him to have to miss any sessions and would rather charge us a discounted tariff in order for us to be able to afford his weekly OT sessions, as well as fitting his PT in as well. How amazing is that?

Talking about angels, since Sam started crawling he has been very scarce at church, with Chris and I alternating Sundays so that one of us can attend and the other can stay with Sam. We are not yet sure how well having a crawling Sam in church might pan out but are determined to give it a bash this Sunday so watch this space for the result!

And in closing, a pic of Sam giving Barney a ride on his "wheels"!

HAPPY MOTHER'S DAY!

2011-05-08T22:54:00.000+02:00

A very Happy Mother's Day to all our followers and fellow bloggers! A friend of mine sent a very sweet text message this morning about how a Mom is also a chauffeur, a cook, a nurse, etc. I wanted to add to that list the following : catcher of puke, poo analyser, urine gatherer, gag reflex preventer, apnoea detector, reflux inhibitor, sensory buffer...and so on and so on...but then the text seemed to lose it's charm, so sticking with the original roles for now :)

Sam has been a little under-the-weather over the past week or so. I am watching him closely, hoping to catch the slightest sign of an oncoming illness as there have been minor indications that this might be the case with a particularly stuffy nose at night and a green gooey discharge from his eyes which, although quite common to many of the RTS kiddies, is something Sam only suffers from whe n struggling with a viral infection. But, if a potential illness is at the root of his being unsettled and fussy, he is somehow managing to keep the more serious stuff at bay so I am hoping and praying that health will prevail. I still feel strongly that the thinner consistency milk is contributing to his returned OSA and snoring at night and have had to resort to basically putting him to bed on an empty stomach with his last bottle being almost three hours before he goes to sleep. This does mean though that he wakes up ravenous. One morning last week I lay listening to his tummy grumbling for almost an hour before he eventually woke up which is a little tough for me because I know he does not yet eat close to the amount of food a typical two year old would consume in a day, now to have him going to bed "hungry" on top of THAT worries me. Still, there is a definite improvement with the OSA and snoring on the evenings I stick to this rule.

Yes, so in exactly one week our little smurf will be two years old! The morning of 16th May is going to be glorious because Sam's paed told us in the beginning that the first couple of years are the most difficult and you cannot go saying something like that to an over-emotional, exhausted, borderline neurotic mom and expect her not to take it literally, can you? Of course not :) Wouldn't it be absolutely lovely to have that kind of timeline though? But we don't, so instead we celebrate the challenges and trials we've conquered so far and prepare ourselves as best we can for the challenges and trials the next two years will surely bring. Bring It On, I say...albeit with trembling knees and the most atrociously faked confidence.

Sticking with past conquests, Sam's crawling is still fascinating us...but is now also keeping us frightfully busy. He explores EVERYWHERE and gets into EVERYTHING! Almost our entire house is carpeted, with the obvious exception of the bathrooms, kitchen and a small area in front of the fireplace and of course these are Sam's favourite places to be as tiles + plastic object = joyful, delightful banging! As much as what I so looked forward to Sam reaching this much anticipated milestone, I knew that with it would come even more required attention and care. Of course, having a house that is split on three levels makes for even more stress as, even though each level is only three steps apart, three steps are certainly enough to cause a little, fairly unco-ordinated smurf to go tumbling and, even more horrifying, break something. And the fact that he is super-quick on those little hands and knees doesn't help either. Thankfully, for whatever reason, he has not yet attempted to crawl head first down any of the steps and, quite surprisingly, will stop at the edge, contemplate it for a while and then turn around. This is so weird because he has on several occasions tried to simply crawl straight over the edge of the bed and displays absolutely no fear at the distance between the bed and the floor. So his newly acquired mobility means even less "free" time for me to take care of the usual daily tasks but does create more stimulating explorations for Sam around the house.

I leave a number of Sam's toys on the floor for easy access but this, of course, means our home looks like a mini-train wreck for the major part of each day.

It's not too clear in this picture, but Sam has started making blowing motions with his mouth. Just in time to blow out his candles next Sunday...nah, probably not! But still kinda cute.

He is also spending a fair amount of time on his knees which, although in this picture he is holding on to the bed, when he manages it without support is great for developing balance for walking later. At this point his overall balance is still quite poor and he topples over quite easily.

One of the first things he always does when on the floor in the lounge is goes for the box of Jenga blocks on the shelf, he then promptly knocks them onto the floor but then ever so sweetly tries to put them back on the shelf. With Sam's initial oral aversion he would not take a dummy or teething ring and the Jenga blocks, which are made of a fairly soft wood, have proved to be a satisfactory substitute as he almost always has one in his mouth. The softness of the wood seems to provide just the right amount of sensory resistance for him, without hurting him but this does mean that the entire box of blocks, apart from being hopelessly incomplete now and distributed throughout the entire house, is also covered in tiny elf-like tooth indentations.

Some more knee time.

And is this not one of the areas in the home a tiny smurf should most be avoiding? Well, Sam is not interested in the "shoulda's" obviously and spends most of his time banging on the tiles or the grate of the fireplace. So guess whose going to have a cold home this Winter?

Some pics of Meg's new "baby", BiBi! Sam has of course christened BiBi with at least two or three good helpings of hair pulling. Thankfully BiBi has become extremly wary of Sam which makes for some adorable entertainment watching Sam chasing her on hands and knees.

BiBi took an instant liking to Sam's high chair and, in an attempt to keep her off it, Meghan tried to get her used to her own doll's high chair. It distracts Bibi for a short time, but it isn't long before you find her curled up on the seat of Sam's high chair.

As I mentioned previously, my mom spent the last twelve days with us before heading home to Pearly Beach. For Mother's Day I bought her a lovely little photo frame which says "I love Granny" on it, but couldn't find anyplace that could print a photo on time for me to actually make it part of her gift. (Obviously it's a fairly popular idea?) Anyway, this is the picture that was meant to have gone into the frame. It took close to 30 shots to get all three of these rascals smiling at the same time, especially with Sam sneakily turning round at random intervals to make a grab at Meg's hair. Sam's hair pulling and, especially, biting has become quite a challenge to deal with...but that's a post for another time :)

A super quick catch up...

2011-05-02T21:00:00.001+02:00

Things have been very low-key in Smurfville over the past week. As our readers from the Western Cape will know, the last couple of school weeks have been a little helter-skelter. The first term ended at the beginning of April followed by a short five day holiday after which the kids returned to school for just under two weeks, before another week long holiday. So it's been a little challenging getting into the swing of things again, especially with the sudden onset of what appeared for a few days to be full-on Winter. Hallo? Uuuhhmmm, anyone spotted Autumn anywhere? You know, like the BEST season of the year when its still nice and warm in the days but cool and comfortable in the evenings? Anyway, why is this significant? Because our smurf does so love change, so having our routine so erratic over the past couple of weeks does not really help much. Nevertheless, minus that minor inconvenience, my mom is spending a couple of weeks with us which, it being a school break, did help hugely with Meghan who has basically had her Gran's undivided attention for exactly a week now and is thrilled at having a willing companion to play uncountable rounds of cards, general knowledge quiz's, puzzle building and, last but not least, to help out with the brand new kitty we brought home on Saturday, given to her by her dad for her birthday. I will definitely post some pics of the kitty soon, who is pretty darn adorable, but my battery is telling me I only have 19 mins power left so hoping to publish this post before then. Hopefully by that time "kitty" will also finally have a name as so far, since Saturday, her name has gone from Mickey (she loved watching the Hot Dog Dance with Sam - the kitty that is, not Meg), Minnie, Minky, KC (Kitty Cat) and is currently branding the Justin Bieber-derived title of "BiBi".

16 mins to go!

So, other than entertaining Meg, having my mom here has also meant that Chris and I got to do some shopping while being able to spare Sam the experience, got to take Meg to a movie on Wednesday (Hop - absolutely LOVED it, so cute) and, most importantly, eventually made it to the twice-postponed, seemingly unobtainable goal of.....you guessed it....going out for supper...just the two of us!!! Woooohooooo! So, this very important event took place last night and the entire evening out tallied a total "away time" of one and a half hours, but it was soooooo worth it. It was like we couldn't speak enough to each other, it was absolutely wonderful to spend some alone time with my hubby and catch up on whatever seemingly-trivial news we've each missed out on over the past twenty-three months (YIKES!).

Speaking of catching up, this will have to be the end of mine as I have just eleven minutes battery power left but in closing, would like to introduce you to Sam's Guardian Angel...St Raphael!

St Raphael

which means

"God Hears"

2011-04-24T12:47:00.000+02:00

HAPPY RESURRECTION SUNDAY!

"On the evening of the first day of the week, when the disciples were together,
with the doors locked for fear of the Jews, Jesus came and stood amongst them and said,
"Peace be with you!""

A Swinging Easter

2011-04-20T12:20:00.000+02:00

I know it's only been a few days, but I am almost certain that in six month's time I will still not be 100% used to seeing our little smurf crawling around and, even more exciting, exploring. The fact that he's crawling is pretty amazing on its own but add to it his overcoming his fears and sensitivities to his surrounding is pretty darn close to unbelievable, especially looking back at where he was a month ago. Yay for OT! Prone to beating myself with the relentless why-didn't-I/we stick eg. why didn't we do OT sooner, why did I stop the Nestargel, why did I re-start the Nestargel....ya da ya da ya da...comes one of my most crushing why-didn't-I/we's.....

Why didn't we put a swing up in the house earlier? And this is why.....

Sam is loving it and although having it in the middle of the lounge/living area is not the greatest idea, decoratively speaking, it means we can do several things while keeping him entertained and being close to the tv for Barney time isn't a bad idea either.

With all the exciting new things happening in Sam's and, therefore, our lives it would be quite easy to lose sight of what time of the year it is....mmmmmm..well with the exception of the thousands of Easter eggs which have been displayed in every shop since 26th December, that is. In keeping within our spirit from last year, we gave the kids their Easter eggs on Sunday already as, although we don't want them to have to feel "left out" when all their friends are drowning in chocolate bunnies, we don't want them to lose focus on what Easter is about and come Good Friday and Easter Sunday have them more excited about the anticipated sugar rush than the spiritual meaning of this period.

At this point a very quick side-step is required to say this : "Hi, I am Nicky and I am a chocaholic! I have been a chocaholic, probably, since the first day I was born (thanks Dad) and my addiction intensifies with age, as my family will testify." The only time I have even mildly considered cutting down on chocolate was when I was expressing breastmilk for Sam and even then had to resort to two blocks of dark chocolate as opposed to going cold turkey. The day Sam went on to AR formula I think I polished off a whole slab of chocolate and could probably count on one hand the number of days I have gone without chocolate since then. In my defense, I have to blame my Dad who is as addicited to chocolate as what I am.

Okay, you will understand the significance of this side-step soon.

At our Sunday service our minister urged us to carefully consider our lifestyles over the coming week, at least, in order to even just try and comprehend the emotional turmoil Jesus was enduring in the week leading up to his being betrayed. Now as kids growing up in the Catholic Church and having to give up something for Lent we almost always chose something we weren't that fond of anyway (I remember giving up liquorice one year but honestly don't think I'd eaten it even once in the year leading up to Lent). So Meg and I chatted about what we would like to offer up and although things like homework and vegetables came up, eventually agreed on chocolate. Yip, after just receiving this enticing collection :

Of course it doesn't help that at, what seems like, half hour intervals my dad keeps offering us chocolate (he's offered me a block while I sit typing this, can you believe it?) and kept telling Meghan last night "Just take a piece!". She has stayed strong thought but keeps insisting that the bunnys' eyes are watching her! It has been kinda fun spurring each other on, think next year we'll try the full 40 days even though we no longer belong to the Catholic church.

More seriously, we are focusing on the Bible story surrounding Easter from Meg's Bible The Children's BIBLE Story Book (Retold by Anne de Graff & beautifully illustrated by Jose Perez Montero) and in keeping with the spirit of what our minister spoke to us about on Sunday, here is an excerpt :

"Jesus was asking the Father to protect all His followers for all time. He was praying for people like you and me. When He had finished, He led them into the garden.

There, He took Peter, James and John. They went off alone together. Jesus was very upset. He said, "My soul is torn up inside, to the point of death. Stay here and keep watch." He was going to talk to His Father. Then He said, "Pray that you won't be weak tonight." Jesus went off by himself to pray.

A short distance away from the disciples He fell onto the ground. "Oh, Father!" Jesus cried out, "If it's possible, don't let Me go through this pain. My Father, isn't there any other way, must I go through this?" Jesus knew God wasn't making Him do anything. Jesus had to chose to obey. That way God could work miracles. He could offer all people for all times a chance to start again and be clean with God.

Jesus looked up at the stars. He said, "Father, I am willing to do what You want."

Jesus in the garden called Gethsemane on the Mount of Olives

He just couldn't wait, could he?

2011-04-17T22:20:00.000+02:00

Who couldn't wait?

Why, Sam of course!

Couldn't wait to do what?

Well, this........

And this....

Being rewarded with some love from Aunty Minnie Mouse and Uncle Damien.

Aaahh...I mean, Aunty Cammy!

Sam is officially O.F.F.I.C.I.A.L.L.Y crawling! It seems almost unreal - wow! I posted last week that, after his little exploratory crawl last Tuesday, I thought he might be crawling properly by his 2nd birthday in a month's time...but even though I said it, it was more of a wistful fantasy than something which could really become a reality. So we are sooooo incredibly proud of this little boy, still managing to haul in some milestones while struggling with his SID. WELL DONE SAMMY!

Sam also now has a lovely swing hanging from our ceiling. Our house, especially the living areas, is starting to look more and more like one massive daycare centre as opposed to a lounge/sitting room, etc. We've even toyed with the idea of just going the whole hog and removing all "big person" furniture and just Sammy-fying the place :) but then again, it could be the lack of sleep talking!!!

I see you

2011-04-16T11:05:00.000+02:00

I see you.

I see you in the same way others do…I see you in a way they don’t.
I see your physical beauty, your spiritual beauty…a spirit so pure and true.
I see YOU…some can’t….some won’t.

I see your sparkling eyes, your precious and enchanting smile.
I feel your joy, your love, your unconditional trust.
I am blessed and privileged to be the one who, for this while,
Will comfort you, believe in you and fight for what is just.

I see your strength, your passion, your infinite will to survive,
Through each and every trial, along a path that offers no rest.
Yet each new step is taken with an unremitting drive,
Determined to conquer each new struggle and every single test.

What if my earthly existence fails to conform to my plan ,
Without the time I desperately need to make sure you’ll be okay?
Although your strengths amaze us, there’s more to being Sam,
I see your vulnerability and it haunts me night and day.

I see who you are…I see who you’re not.
It’s a reality that simply cannot be forgot.
But through eyes tainted with awe, devotion and love,
Come three little words which encompass the above….

I see you,
I SEE you,
I see YOU!

Nicky de Beer:14/04/2011

IMPROVISING......

2011-04-14T20:48:00.001+02:00

As mentioned yesterday, Sam had another OT session this morning (No, I didn't remember to ask about getting him to sleep, it completely slipped my sieve....uuuhhhmmmm, I mean MIND). I don't know about ol' Smurf, but I thoroughly enjoyed it. Sam was a little bit grumpy after having woken up that way this morning which made him a little challenging to work with, but I adore watching and learning all the different techniques and activities one can do with him. So, new activity learnt today was Sam playing in a ball "pool" which basically consists of a camping cot filled with little plastic balls you often find in kiddies' play pits. Sam did surprisingly well, although I did have to climb in with him. Luckily enough we have an entire bag filled to the brim with the same balls at home which Sam hardly plays with and we also have an unused camping cot, due to Sam's depth and colour sensitivities. Then remembered that the camping cot would not be at all practical as it is not flat on the ground, but stands on little feet which wouldn't be a problem for Sam's tiny little being but mine on the other hand??? Putting him in there on his own also isn't an option because if he was able to tolerate being in the camping cot, we wouldn't have had to go out and buy a whole new cot recently. So, on to Plan B which is clearing out one of Sam's toy boxes which is high enough to prevent him from falling over and out should he wriggle too much, but low enough for him not to feel threatened or insecure and to still see what's going on around him. Well, it turned out to be an excellent improv as he went into his new "ball pit" with surprisingly little reluctance and spent a good ten minutes in there until I started feeling guilty about leaving him on his own (meaning I was a whole arm's length away as opposed to having him attached to me) and took him out. In any case, wouldn't want to overdo it to the point where he starts developing a negative reaction to it but it was so great that he tolerated it as it helps with deep pressure input and, once he becomes more comfortable, can even become a stimulating activity by putting him in there and hiding one or two of his favourite toys and having him try to find them. Here are a few pics.....

Snug as a bug in a rug!

Of course there had to be knocking involved and how cool for Sam that he could knock with two hands at the same time, without having to even fully outstretch either arm!

And, talking about bugs, I put Bigley Bug into the box with Sam as BB has a little mirror on his tummy so Sam could occasionally check himself out, which he loves!

Need I report that Sam had to be walked to sleep again last night? If this was not the case I would have either had to worry about someone sneaking into the house and switching my little smurf with some strange fall-asleep-on-its-own type baby or had to doubecheck that my post actually published in the first place because when oh when has it happened that I've posted about something great happening and it actually stays that way??? But, thankfully, there was no vomitting involved which is a pretty good second prize, even though my back, shoulders and arms contort into all sorts of spasms once Sam's eventually asleep. (Mmm..perhaps that is why I seem to have lost most of the use in my left arm and hand...seriously, in a matter of five minutes this evening I dropped Sam's entire bowl of supper and then the shaker with his milk in it. On Monday night I dropped a bowl of boiling hot rice. Anyhoo....) This evening, with Sam being super exhausted after a very active day, I decided to try and persevere with just putting him in his cot and made sure that everything was as it had being on Tuesday evening...all was going well, other than an occasional whimper. HOWEVER (yes, there's a "however") while Chris and I watched from well concealed hiding places in the room to make sure Sam was okay, Chris started caving and it was a matter of minutes before he'd picked Sam up. Naturally I told him that he'd destroyed all my hard work and perseverence....all two nights of it....and that he would have to get Sam to sleep...which he promptly did - WOOOHOOO! No spasms for me tonight :)

Desperately Seeking Profound!

2011-04-13T12:45:00.001+02:00

First, some catching up on pics.....

We didn't take many photo's while in Stilbaai last week but did manage to snap a few of the very first thing which caught Sam's attention....Ouma's piano! And of course, every time you walked past the piano or anywhere near it, that crooked little finger would gesture wildly at it.

The piano is somewhat different to Meghan's keyboard, which is what Sam is used to "playing" on, so it took a quick moment to familiarise himself with it and a little more concentration....."Mmmmm...let's see. Chopstix, okay, these two fingers go here...wait, wait...or is it.......?'

"Aaaahhh, finally figured it out and we're into full swing Chopstix!"

One of Barney's episodes does actually feature a boy and a girl playing Chopstix together and when you tell Sam to "play Chopstix" he automatically sticks those two little fingers out and pounds away at the keys.

The normal procedure for car travelling is that Meghan has to read and knock for Sam throughout most of the trip, however, Sam decided it was time to return the favour and read a story for Meghan on the way back from SB, while she slept.

With Sam still not doing much independant sitting and self-entertaining while we work on his SID, it has become remarkably difficult to keep him occupied during the day, not to mention trying to find even just a five/ten minute gap to make a bottle, throw some clothes in the washer, etc. So, with Sam's birthday only a month away, we opted for an early pressie which will, hopefully, provide some variety of entertainment until he's "okay" enough to be able to spend ten minutes playing while I do something. For now though, he is still quite frightened of anything remotely new or unfamiliar regardless of how many charming characters and exciting noises it makes, so he has to be re-introduced to his little Toy Story ride-on every time you put him in it...which is a little taxing, but eventually he relaxes enough to allow you to seat him on it and take him for a five minute walk around the house. We also bought him a little swing, as recommended by his OT, which we will be able to use both inside and outside of the house.

The ride-on happens to fit perfectly under the keyboard which is a bonus and provides a charming "pitstop" for our sitting room journeys.

Sam has, at last, had a haircut...or rather, something vaguely resembling a haircut. It had to be done in two shifts as he absolutely refuses to sit still, so the right side was done on Sunday evening and the left side on Monday evening. Yes, I know...rather weird, but it's all we can manage without making Sam upset to the point where he "v-word's". Thankfully (for once) we have what one might refer to as a low-key social life, so Sam sporting a lopsided haircut for a day was not all that distressful :)

On to the subject of sleeping. Our little man has decided to, again, combine two of his most exhausting traits together - the "v-word" and screaming himself to sleep. So, up until last night, we were back to Sam point blank refusing to go to sleep at night, regardless of how long I walked him for and sweet-talked him in an effort to try and keep him calm. The first challenge is that lately he refuses to be walked in a lying position, which means you need to hold him upright at a 45º angle to your chest with one arm, while supporting his back and neck with the other. The moment you try and edge him ever-so-slightly into a horizontal position, he starts crying. (I know what the normal first response would be - ear infection? But nope, his ears have been checked three times since he's adopted this new "sleep" position and they're perfect). Even though he only weighs 9.75kg's, this is quite a hold to maintain for whatever time period it takes for him to fall asleep, which can be anything between thirty to forty-five minutes, and is usually accompanied by him trying to push against you in an effort to avoid sleep, which then leads to me trying to shift his position, which leads to him screaming and v-wording and then screaming some more because we now have to wash him down and re-dress him, after which he will eventually cry himself to sleep.

Over the past few days though I have just placed him in his cot for his morning nap, instead of walking him and he has managed to actually fall asleep. So last night I tried the same thing with his bedtime and, although it took thirty-five minutes, he did eventually fall asleep. I thought WOOOOHOOOOO....we've overcome one major taboo in our household. But alas, come naptime this morning....he cried when I put him down in his cot, so I landed up doing the the 45º-walk-of-torture! And, if you put him in his cot and he disapproves, he simply trashes the place.......

...and finds it all too amusing!

We have OT again tomorrow morning so I will hopefully remember to mention the sleeping problem to her and ask for some advice.

I think Sam's being generally unsettled (for lack of a better word) at the moment is having a definite effect on my own emotional state of mind as I am sure it would for all moms, whether it be of typical kids or differently abled. I keep feeling like I am missing something, something of utmost importance which might have placed Sam in this sensory unstable place and might prevent him from coming back from it unless I can figure out what it is. A few days ago I took out some more books from the library written by parents of special needs kids and keep skimming the pages, desperately looking for some phrase....some profound piece of precious information....which might jump out at me and point me in the right direction of what it is I/Sam/we are lacking which could turn our lives around. It is so frustrating when I don't see that phrase, don't feel that startling jolt as something finally connects in this worn-out mind of mine and the light, at long last, goes on....and stays on!

Of course, being in South Africa, our resources here pale in comparison to our overseas RTS families and books on more common syndromes/disorders are limited and hopelessly out of date, not to even mention something as rare as RTS. So, I had to laugh at the one book I opened on Monday in which one of the first things the author warns about is relying on antiquated and obsolete books, etc and details her own frustration when purchasing a book on Cystic Fibrosis, only to find it had been published almost twenty years earlier. The very next thing I did was turn to the front of the book only to see that this very book had been published in 1990!

WAIT

But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint. Isa. 40:31

A pressing need, a burdened heart,
A longing in my soul that won’t depart-
My trouble burns as a brand upon my spiritual man,
But our all-knowing God has a plan.

I want, I pray, I beg- I plead,
My heart burdened with a Goliath need;
Our Lord knows- we surmise,
And our petitions He will not despise.

But God doesn’t answer right away,
Though with much expectation we pray.
"Wait" - our Master seems to say-
To a heart grieved day by day.

The wait is not in vain-
Giving hope amidst all our pain.
The Lord shall turn our loss into gain,
Though God’s ways we cannot explain.

~ Gene Griffin ~

Good Ol' Smurf Mentality

2011-04-08T07:58:00.000+02:00

So, thankfully, it appears as though Sam’s blog is not somehow jinxing his health. Phew! What a relief that is. (Of course I was being serious when I said that last week…LOL). With only an extremely minor throw up on Saturday, we were all good to go for Sunday’s trip. Or so we thought. No, nothing ailed us from Sam’s side however, our usual three hour & forty-five mins trip was turned into a five hour long trip, both ways. We left at about midday on Sunday afternoon thinking that the roads would be relatively quiet as all the holiday goers would surely have left on the Friday after school and not many people choose to travel on a Sunday afternoon. Our intentions probably would have paid off except for the major roadworks taking place along the way which resulted in over an hour’s delay. Sam was beside himself and got to the point where he just couldn’t take it anymore and started biting me in the face and pulling my hair from frustration. (This has become quite a habit of his when dealing with any kind of “overload” in a situation.)

Effectively, out of the forty-eight hours we were “gone”, we spent ten hours travelling and, say, sixteen hours sleeping which left us with a measly twenty-two hours actual visiting time. Not one of our most intelligent escapades ever if you look at it from that point of view, but at least we did get some quality time in with Chris’ family and, as always, Meg and Chrisna played up a storm.

Sam only had one v-word episode while we were away and that was on Sunday night, mostly due to still being stressed about the long car trip which found us arriving just about his supper time which then, of course, sent his normal evening routine hurtling to the wind and left him completely unsettled, on top of not having much time to get used to his new surroundings before bedtime. But for once it was Chris who got v-worded on which was a small, yet much appreciated, consolation…well for me anyway.

Sam had his second OT session yesterday morning which couldn’t have come soon enough as his biting has become so out of control that he actually had me in tears on Tuesday afternoon. At first I thought it was just his version of a kiss, because he seemed to do it in an almost affectionate manner but, as his OT confirmed this morning, it is definitely related to the SID as it happens predominantly when he is in some form of sensory overload, whether it be negative or even positive, like when he laughs so much that he actually starts crying. Anyway, the session went extremely well with very little resistance from Sam. He loved all the various types of swinging and even tolerated the new types of brushing and deep pressure input. Sam was helpful enough to go into one of his biting “fits” right there in front of the OT, ripping out a large handful of my hair together with the biting, which enabled her to see exactly what I was referring to. She gave me a fairly thick piece of tubing to try and keep on me as often as possible so that when it looks like Sam’s about to bite, I can quickly place it in his mouth and get him to seek his sensory input through the tubing rather. We are still carrying on with the sensory brushing which Sam still tolerates quite well most of the time, but it’s the deep pressure exercises afterwards he resists so aggressively. I was actually pretty much convinced that I’ve been doing the deep pressure input incorrectly because Sam literally fights me on it, but when OT went through the exercise this morning he tried to fight her off as well, which did put my mind at ease….well, a little at least!

Sam’s crawling is coming along beautifully, especially over the past couple of days. Dare I say he might be crawling properly by his 2nd birthday (in just over a month’s time)? He has even ventured out onto the normal floors now, as opposed to only managing to crawl on the bed or a duvet laid out on the floor. It is sort of weird to be looking forward to crawling by the second birthday whereas usually you’re entertaining the idea of your child possibly WALKING by their FIRST birthday. I really appreciate the tact and compassion with which Sam’s OT has handled this particular subject as, when doing his assessment and coming to the developmental section, she did not feel it necessary for us to have to pinpoint exactly to what extent he is delayed. Along with the forms which she handed me to complete was the development assessment page (I didn't have to fill this in either - thank goodness) but from the information on there it would appear that Sam is only on the developmental level of a seven/eight month old baby…perhaps a nine month old at best. While I have no delusional perception about Sam’s development, somehow hearing a “professional” person spell it out for you just seems to sharpen the reality, so I am grateful for her sensitivity.

We are still doing the no-Nestargel formula but I am not sure for how long this can stay a solution as there is still definitely a degree of reflux going on, which is especially obvious at night with the OSA and stuffy/congested nose again. Wow, one just cannot seem to win! Because of Sam’s inability to co-ordinate both hands for such a long time, he was never able to hold his bottle himself, which was not necessarily a bad thing as we had to use teats which were designed for thicker liquids and which had three different flows on them, of which Sam used the smallest due to his swallowing problems. Had he actually learnt to hold his bottle himself, just one slight twist of his hand would have had him sucking on the widest flow so I was quite happy to be holding the bottle for him. Now that he is drinking normal consistency formula there is no reason why he cannot hold his bottle himself…well, other than the fact that he refuses!!! Chris tried to get him to hold it last night and although he kept his hands on the bottle while Chris in turn held Sam’s hands in place, the moment Chris removed his own hands Sam just let the bottle drop. Of course there’s no way we can blame poor little Smurf…having someone else cradle him and hold his bottle for him is how he’s been doing it for the last twenty-three months and he obviously just doesn’t see any good reason to change that….can’t say I disagree with that ol’ Smurf mentality.

P.S. This is my first official blog from my new Acer Notebook so that in future, regardless of whether we are away for a few days or Sam is in hospital or whatever, there won't be such long gaps between posts. Thanks Love - Love you xox

"V-word"

2011-04-02T21:44:00.000+02:00

After my "Completely Unreal" post on Wednesday, Sam's throwing up really got out of control. Everything he ate/drank from about 12pm on Thursday came up, he even vomitted in his sleep on Thursday evening after I put him to sleep and again on Friday morning while I was holding him, in an upright position, after falling asleep while having a bottle. We decided to take him to see his paed, who managed to fit us in at 1pm on Friday afternoon. So Dr B thinks there are two possibilities - Sam either has a bit of a viral infection/tummy bug or Sam's sensory issues are still even more severe than we thought - or it's a combination of those two. As I posted a few days ago, I had decided to put Sam back on Nestargel, right smack bang in the middle of his SID (Sensory Integration Defensiveness) peaking. I know - you must be thinking "What on Earth could Nestargel have to do with SID?" Even when Sam's new OT mentioned on Wed that severe SID can be THAT brutal that it can effect one's gastrointestinal system, I wasn't quite certain what she possibly meant - now I do though!! But, then on the other hand, the return of Sam's snoring and stuffy nose could be related to a viral infection and not reflux at all. So Dr B suggested I stop the Nestargel again, straight away, which I did....and?? No more vomiting, other than a tiny bit this afternoon but Sam also happened to be in the throw of a particularly vigorous bout of flapping when it happened. (And of course we all know by now that, with near certainty, Samuel will vomit within the next hour just because I have dared to blog again that he hasn't).

We can't completely rule a viral infection out but it would be quite a coincidence that most of his excessive vomitting started again when I re-introduced the Nestargel and stoppped again when I withdrew it. (As I am typing this, Samuel has just woken up and started moaning - Chris is with him now, but if he does throw up I will have to accept that somehow me posting on this blog is jinxing Sam's health and just call it quits. Please! Please! Don't throw up Sam.)

Let's do a quick change of subject - I totally expected Sam to have lost a significant amount of weight by now and, although he hasn't picked up much, he does now weigh 9.75kg which is not too bad considering the "V-word". I have been so thrown over by the "V-word" lately that I don't know if I've mentioned Sam's crawling progress yet! Sam can crawl about five or six "steps" at a time now, albeit it only in places where he feels safe and secure, eg. on the bed and far away from any "larger" items of furniture, like tv units, cupboards, etc which play on his depth perception sensitivity. Oh..and did I mentioned that he can wave "Ta Ta"?? Again, like with the clapping, he can now follow a verbal instruction to wave as opposed to just copying someone else doing it. He understands most of what we say to him and responds by making his Sam-style grunts or hand gestures...which is most certainly not the ideal form of communication, but a form of communication nevertheless.

For me, the whole sensory thing has really knocked me into a daze of uncertainty and frustration. Sam's RTS seems to pale in light of the debilitating effect this is having on us and, more importantly, Sam. But as always we push ahead because there's little else we can do, other than shed the occasional tear of sorrow. On a more positive note - we have decided to chance the trip to Stilbaai tomorrow so here's holding thumbs for a "v-word" free drive, both tomorrow and on Tuesday. And, still on the positive, it is my birthday tomorrow and although, as with everything we do lately, it has been pretty low-key I did get some lovely gifts from Brampies, Cammy & Damien, Joe & Meg and, of course, Chris. Chris and I are contemplating going out for a quick breakie tomorrow morning before we leave for Stilbaai but will first have to assess both Sam's and Brampies' frame of mind in the morning.

In closing I have to add that I am super thrilled with Meg's report for the term, obtaining all 4's (out of a possible 1-4 grade, with 1 being the lowest) and an awesome 100% for Technology, 94% for EMS and 92% for History! Well done, Megs!!! What a huge relief after the year started off with a rather dodgy beginning :) Luke only gets his report next trimester, which only starts 11 May but, if his test/assessment results so far are anything to go by, his grades should follow the same suit.

GRACE SUFFICIENT

My grace is sufficient for thee: for my strength is made perfect in weakness. 2 Cor. 12:9

His hand is on you still,

As you seek and do His will.

Don't give in to despair,

Rest in your Father's care.

For when you think you can't take it,

He will give you grace to make it.

Gene Griffin

Completely Unreal!

2011-03-30T16:25:00.000+02:00

Samuel just vomitted.......