LOOK MA, NO SPLINTS!

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

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

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

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

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

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

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

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

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

Psalm 144:15

Just to let you know

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

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

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

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

JOY - ALWAYS THERE

"A joyful heart makes a face cheerful, but a sad heart produces a broken spirit."
Prov 15:13

Dr William Barclay says : "We may put it this way - whatever the ingredients of Christian experience and in whatever proportions they are mixed together, joy is one of them."

Selwyn Hughes writes : "Joy is always present in the heart of a Christian. It may not always be felt or recognized - but it is always there. And eventually it will break the surface, no matter what our situation or our circumstances. I have always maintained that joy is an inevitable part of the Christian life. Now I am sure. Oh, so very sure."

Just a little something for my JOYful Smurf who, no matter what he is going through, remains full of joy and life, full of eagerness to live and experience, full of love and acceptance. He is one of the most wise beings I know, wise in how he teaches us one of the most fundamental characteristics - JOY!

Another wise person I know is Noah's mommy, Kristi who handled a very sensitive situation in an awesome way.

The tongue of the wise makes knowledge attractive, but the mouth of fools blurts out foolishness." Prov 15:2

SH writes that we become what we say.....we become the incarnation of what we express.

"If it is true - and I believe that it is - that we become the incarnation of what we express, then how careful we ought to be to ensure that what we say is guarded and governed by truth, integrity and kindness. Always remember : every word you utter becomes flesh - in you."

Check out the link to Noah and Kristi's blog - THE ADVENTURES OF NOAH AND NICK

P.S. All is well with Sammy's wound on his right hand. After some confusion with how to be taking care of the wound until the hand specialist is back from leave, we took him to our family doctor who redressed the wound and made sure that everything is okay (which it is, in fact the wound looks really great). So we are all smiling!!!

ZERO TO THREE.....

.....in less than a week. Three being the number of teeth Joyful Smurf has acquired since that very first one made its appearance last week! Way to go, Sam, especially cutting your "teething time" down by doing 3-in-1 jobs - lets hold thumbs they all go like this (who am I kidding?). Neither Meg or Luke teethed in an exceptionally fussy way but for some reason I just expected Sam's teething to be more of a nightmare. Sure he's a little bit crabby and moaney every now and again but, taking his recovering thumbs into consideration as well, he's certainly not doing too badly at all...there's no fever or anything like that and although his tummy's a little looser than usual it certainly hasn't reached "runny tummy" status just yet. He has gone off his food a little bit, but he was never really that in-love with the Purity food in the beginning and much prefers "real" food, he even had some of my pear yesterday (obviously I mushed it up a bit for him) but gags and pulls his face when I try him with any of the Purity fruits.

Monday's appointment with the OT was relatively uneventful, they just checked that the splints weren't causing any major skin irritations and altered the left one a tiny bit after we had to tighten it some. As I type this we are just waiting to hear back from the hand specialist's rooms as we noticed that the wound on his right thumb has been bleeding again and we aren't sure if, three weeks after the operation, this is normal?



Thank goodness that alot of the food stains that were on the strap were cut off the splint on Monday after adjusting it, but you can still see proof that Sam is persevering in trying to suck and chew on this strange new thumb he's grown.


What bliss! Joyful Smurf and Silly Smurf having some "downtime" yesterday - I think it lasted a total of about seven minutes, the amount of time it took for him to turn the bucket upside two or three times and then get bored. And instead of me using the time constructively to take care of one or other much-needed house task, I spent it taking pics of him actually having the downtime!
For his birthday we bought Sam some lovely little toys that make music and animal sounds, etc. but he loves the most basic and simple one - his shapes bucket. For some reason, it just has to be upside down though - as soon as you give it to him he becomes intent on turning it around, splinted hands and all. Before his op he loved taking one of his plastic bath boats (a great buy, Dippie) and knocking it on everything from the walls, doorframes, the animals in his Noah's Ark (poor things) his head, my head (again...poor things), etc. and especially on the upside-down bucket. But with the splints on he can't quite grab the little boat properly so we bought him a little toy drum over the weekend but it just doesn't seem to give him the same satisfaction - go figure!

MUSHY SQUISHY PORRIDGE BRAIN & THE TOOTH

You know how when you're pregnant and start becoming extremely absent-minded or just plain forgetful, you always blame it on your "porridge/nappy/poop" brain. And then when the baby's born and you're still absent-minded and forgetful, you still blame it on your "porridge/nappy/poop" brain. Well, I'd like to know what you call it when you are no longer pregnant and the baby's already 13 months old and you are STILL absent-minded and forgetful? Well, whatever it is you call it (and no, I am not going with "dimentia") I most definitely have it. For like the last few days I have merrily been counting down the "20 days" until Sam's wires come out. 20 DAYS? From the 14th June until the 12th July.....20 DAYS? Alrighty then....so instead of having a leap year this year, we're having a PAEL year where you actually lose a day (or seven)! How awful it was when the light bulb spluttered into life on Thursday and I realised I'd been calculating incorrectly (and for all the world to see on Sam's blog, no less). It's like when you lie in bed one Friday morning, dreamily planning what top you're going to wear with your jeans (it being Friday and all) and then all of a sudden realise its only Thursday (mmmm...well if this hasn't happened to any of you - what do you call it when you're not pregnant, have not recently had a baby, are not even thinking about having a baby - but you're still absent-minded and forgetful?)



So, if the miscalculation in the countdown to W-Day wasn't bad enough. On Thursday evening, after little Joyful Smurf was down for the evening, I finished with the usual regime (making milk, washing bottles, etc) and afterwards decided to pour myself, Chris and Grampies each a glass of lovely sweet, gut-warming Muscadel (a type of fortified wine). I opened the cupboard, selected one of the only two bottles there and poured myself a very tiny tot (the thought of having a nightcap is always more appealing than actually drinking the stuff), set mine down on the counter (or bookcase....or desk...or somewhere among the four or five cups of tea I misplace every day) and handed the men theirs, who were watching tv in the near-dark. Next thing Grampies was coughing and spluttering and Chris' face contorted and he asked what I had given them. Naturally I first insisted that it WAS Muscadel and then ran to the kitchen to promtly read "Brandy" on the bottle - I had given them each a nice big ol' glass of neat Brandy! Not the same smell, not the same consistency, not even the same colour as the Muscadel...and they'd each taken a generous mouthful, expecting the much more gentle taste of the Muscadel. It was sooooooo funny - well, for me at least!



So, onto someone whose brain is far more alert than mine - on Friday Sammy was sucking on a quite thick shortbread cookie. Next thing he'd bitten the whole corner of the cookie off (the "whole" corner being about 0.5mm in diameter). I kept wondering, while desperately trying to fish the crumb out of this mouth, how he'd managed to bite through such a thick biscuit with just those little toothless gums. Later that day Sammy was sucking on a marshmallow when I noticed a disctinct little "hole" in the marshmallow and what do you think I found in his mouth? The teeny weeny tip of a tooth!!!!! Our little tooth is not growing at a very rapid pace so it's not quite yet "photo" material, but at least we know its there which is just as good for now!



Sammy was "flipping" the label of his pillow (after wrestling the pillow case half off as usual) back and forth this afternoon and, low and behold, fell asleep mid-flip! This doesn't happen every day (not just the flipping, but the falling asleep during the day) so had to take pic.

This is a "before" photo I took of Sam's splint on Tuesday. I will take the "after" pic tomorrow - you need the twenty-four hours to prepare yourselves. Lets just say that white was not the best way to go for a little baby whose almost every meal contains lovely, bright-orange creamy carrots (yes..with honey) and who is still persistently trying to suck his thumb. We are going into the OT's tomorrow so they can just double-check that the splint is still fitting correctly and I cannot tell you how embarrassing it is going to be having to produce such a terribly stained and half-sucked splint compared to the lovely clean one we left with last Monday. In my defense, and I know this might be hard to believe, but it is anatomically impossible (well for me at least) to have one hand manouevring a feeding spoon amongst the King Kong-swatting-the-plane like action of Sam's arms, one hand holding the bowl and still find another hand to restrain those propeller-like arms.

Thank goodness there's only 15 days to go till W-Day....LOL!

WORLD CUP FEVER!

As you may or may not know...South Africa hosting the Soccer World Cup is in full swing. Well, if you're South African you most DEFINITELY know by the unrelentless blowing of vuvuzela's, regardless of the place or time. So, we decided to get into the patriotic swing of things and adorn our car (and selves) with some Fifa decor. (I must add that some of these picture were taken under great duress).

Sam got it all a little mixed up and thought he was taking part in some sort of pirate dress-up story "Aye Aye Matey....where's me patch?"

"What? No pirates? Well thats something to smile about."

Aaaannnddd....we're still doing the clingwraped/freezer bagged bathing - although I am not sure how much longer we can keep it up. With all the funny acrobatics and gymnastics it takes for us to undress Sam, bath him and get him dressed again while all the while holding those two extremely active arms still, our bodies are being stretched into angles not meant for human formation. If it was Summer it would be easier to just give him a sort of mini-shower in the bath, but alas it is not Summer and pretty darn freee-e-e-z-zing. I've even threatened to go by 20 different babygro's and vests (20 being the number of days until the wires come out of Sam's thumbs) and at the end of each day simply cut the clothing off him. Luckily we've not yet reached such desperate heights.

On a more serious note - we had a bit of a setback at Sam's appointment with Dr Carter on Monday. In between removing the old dressing and putting the new ones on, the wire in Sam's right thumb (which sticks out slightly from the tip of his thumb with a little hook to prevent the pin becoming covered by a layer of skin and also making it easier to remove the wire when the time comes) became hooked on Sam's jumper and of course, the second he moved his hand the wire pulled out by 5mm or so. Sam howled in excruciating pain and it took forever for us to settle him down again. Dr Carter reassured us that it would not cause any problems with the healing of the finger as the wires go quite deep into the thumb, but obviously the accident has now made the thumb even more tender and painful for Sam. I think I had also set my expectations a little too high with regards to the result I thought we'd see and so when I saw that Sam's thumbs are really quite far from being straight, together with Monday's little accident I just sunk into an awful pit, filled with self-reprove for making the decision to have the operation in the first place. But, thankfully, I have a wonderful friend in Jacqui who in a caring and loving manner, reminded me again of the overall benefit of having the operation. So, although it will be a little sad if the procedure has no immediate effect on Sam's thumbs, it does mean that they should not become any more angulated with age, which is what they were doing before.

So, we go back to the OT's on Monday just for them to do a quick check-up on the splints they made at our last appointment (which was obviously done under rather traumatised conditions) and then back to Dr Carter again for the removing of the wires on the 12th July. Yaaahhh! Sam is just not loving having to suck on the splint, although he has kind of settled on that for now. Chris suggested we go buy a cheap doll somewhere, cut off the thumb and attach it to the splint so that it might feel a bit more authentic for when Sam's sucks it, but it all seemed a bit too "Chucky-like" for me. One good thing about having the bandages off is it's far easier to go out in public. You won't believe the looks we'd get from people, walking around with this tiny little baby, completely bandaged up to his elbows. I was so close to just printing out a little note and attaching it to Sam saying "Please Note - the infant attached to this notice has undergone necessary hand surgery in order to rectify the angulation of his thumbs due to his having Rubinstein-Taybi Syndrome and has in no way been abused or mistreated by his parent/s. For further confirmation kindly contact Dr Carter at Life Vincent Pallotti Hospital or kindly soften the accusing look on your, otherwise, friendly face." For once, Samuel being so tiny was an advantage because with that note attached to him, passersby would instead be walking around bewildered thinking "Infant? What infant? All we see is a piece of paper being carried around like a baby by some dodgy little woman."

Other than that, the holidays are dragging drearily by but we have Father's Day to look forward to on Sunday as well as Sammy's Granny from Pearly Beach coming down for a visit. We haven't seen her since December so it will be great to catch-up and for her to see how much Sammy has grown.

And, on that note - a word from our sponser (or rather a look) - the one, the only, the exhausted (from yet another day with less than 20 mins napping).......SAM THE CONQUEROR! (Can't you just see how full of life and laughter he is by the time it gets to late afternoon).

A Trouble Tree

I hired a plumber to help me restore an old farmhouse, and after he had just finished a rough first day on the job, a flat tyre made him lose an hour of work, his electric drill quit and his ancient one-ton truck refused to start. While I drove him home, he sat in stony silence. On arriving he invited me in to meet his family. As we walked towards the front door, he paused briefly at a tree, touching the tips of the tree. When opening the door he underwent an amazing transformation.

His tanned face was wreathed in smiles and he hugged his two small children and gave his wife a kiss. Afterward he walked me to the car. We passed the tree and my curiosity got the better of me. I asked him about what I had seen him do earlier.

Oh, that's my trouble tree," he replied. "I know I can't help having troubles on the job, but one thing's for sure, those troubles don't belong in the house with my wife and the children. So I just hang them up on the tree every night when I come home and ask God to take care of them. Then in the morning I pick them up again. "Funny thing is," he smiled, "when I come out in the morning to pick them up, there aren't nearly as many as I remember hanging up the night before."
(Author unknown)

ANOTHER CONQUEST FOR THE CONQUEROR

I can hardly believe that it is almost a full week since Sam's op. My weeks of anxiety and emotional trauma at, what I had convinced myself to believe up until two days before the op, would be such an incredibly frightening experience. And? Of course there was no incredibly frightening experience. The truth? There is nothing...ABSOLUTELY NOTHING...I can think of that would have made the experience any smoother or easier to handle. Sam was a little edgy during the hour and a half before the op as it meant he had to wake up and travel to the hospital without having his "wake-up" feed. But once we got to Vincent Pallotti we were admitted literally within 5 minutes (even though we were actually half an hour late), and twenty minutes later we were already on our way into theatre, the pre-op observations, etc all taken care of by the wonderful nursing staff.

I went into the theatre with Sam, who sat on my lap, and after just the second line of "Wheels on the bus" Sam was asleep. An hour and a bit later Dr Burke (the anaesthesioligist) came to call me as Sam was in the recovery room and waking up and they told me to actually climb into the cot with him and hold him as he started rousing. The first hour and a bit after he woke up was quite difficult as obviously Sam was hugely disorientated, his throat became dry from all the crying and he started gagging and wheezing, but we gave him some sugar water and then he settled down with his bottle (albeit still half asleep). Sam was also given a local anaesthetic in both hands which lasted ten hours after the op to ease whatever pain he might have.

We completely credit our awesome and wonderful God with the ease and grace at which Sam went through his operation, but still have to acknowledge the most amazing, caring and stunning doctors and nurses that were responsible for caring for Sam for those twenty-four hours. I mean who ever heard of an anaesthetist going to check on one of their six patients for that morning, down in high care...even once? Well, Dr Spencer Burke checked on Sam THREE TIMES in the twenty-four hours he was in high-care, as did the paediatrician we had only met the day before the operation, Dr Carl Wicht. And of course, a job well done to Dr Steve Carter who not only did an amazing job on Sam's thumbs but indulged me yesterday when I started worrying that the gauze around Sam's hands was becoming too damp due to his palmar hyperhidrosis (excessive handsweating) and insisted we bring Sam in so that he could have a look and reassured me that all was well and we needn't worry.

So, as I mentioned, Sam stayed in high-care overnight on Thursday evening just to be monitored because of his OSA (Obstructive Sleep Apnoea) and the other related concerns with RTS and anaesthetic, but all went well and he had a pretty peaceful night even with eight really short apnoea's which only lasted 10 seconds each time and didn't even cause him to desat. One of the nurses even managed to give him some meds at about 1am in this mouth, with a syringe....and he just slept and swallowed right through it...not a peep of a sound. So Friday morning we were okayed to go home, which was great! And of course Mr de Beer Jnr is extremely spoilt, even more so now than before, as he has absolutely NO downtime during the day (downtime being any micro-second which might be spent anywhere else other than on mine or Grampa's or Luke's arm) Although he is becoming incredibly frustrated with not being able to use his hands, Sam doesn't seem to be in any kind of pain and is most definitely taking full advantage of his condition - clever chap.

I have to brag about what a brave little boy this conqueror is though...within hours of the operation he was smiling and chatting to anyone who happened to wander into his ward and was really such an absolute pleasure that we were asked if he was always so "joyful" and you know what? When we really sit and think about, even through his occasional hysteria-episodes with therapy, etc and even though I spend hours upon hours each day singing Wheels-on-the-Bus (I must at some stage post about the many variations I have had to create in order to make the song last longer) to get him to sleep, eat, calm, etc he really, genuinely is a little boy that is so completely filled with JOY...our little Joyful Smurf!

About half an hour after coming out of recovery Sam slept-sucked through his first bottle of day

A bit more awake and started to check out his new "suite".

With the help of a little morphine, Sam even managed some downtime in the hospital. This was on Thursday afternoon, about three hours after the operation.

Friday morning and all ready to leave!

Sam's first bath after the operation, plastic bags and all. Excuse the

lovely pink washcloth mind you, it was the first thing I could find

to cover those sensitive areas before Chris snapped the pic.

So our little man is well on the road to recovery. On Monday we go back to Dr Carter for him to remove the bandages and fit the splints. We also got some great news from Dr Perrot on Monday that the glaucoma examination he did while Sam was under, came back 100% negative for glaucoma or any other problems with his eyes! Yay!

"The Lord is near to all who call on Him, to all who call on Him in truth. He fulfills the desires of those who fear Him; He hears their cry and saves them."

Psalm 145 :18-19

"I am the Lord, your God, who takes hold of your right hand and says to you "Do not fear; I will help you.'"

Isaiah 41:13

FORTY-SIX HOURS and counting down....

...until Sam's op. I am meeting with the anaesthesiologist this afternoon at 1:00pm, armed with my little pack of information - it can't harm to be prepared :-) I thought by this stage that I would be quite hysterical with anxiety but am pleasantly surprised to find myself a little more relaxed than I anticipated. The truth is that there are so many people praying for Samuel, I am already receiving emails and sms's (texts) from friends telling us that they are praying and keeping him in their thoughts! So, with that kind of prayer power behind us, you can do nothing else but believe that he will be safe in God's hands :

"Don't worry about anything; instead, pray about everything. Then you will experience God's peace, which exceeds anything we can understand."
Phil : 4:6-7

So, onto something else : about a week ago there were a few emails on the RTS listserv about the challenge some of our RTS kiddies face in making friends. Although we are not at that stage where this affects Sammy now as most of his "friends" are either the battery-operated, "wheels-on-the-bus" singing kind or the hairy, tail-yielding, four-legged kind. But still fell upon a poem that, I thought, was quite sweet and relevant :

A FRIEND LIKE ME
Please don't be afraid of me, I want to be your friend.
And if you get to know me, your rigid thoughts might bend.
Thoughts that I am different, from others that you know.
I really am no different, and this I'd like to show.
I live and breathe and laugh and cry,I love to play and learn.
I sometimes do things differently, which can cause some concern.
You see, some say I am special,I guess this much is true.
But if you were to ask me, I'd say you are special too.
We are all a little different, no two are just the same.
It's really something wonderful, that way there is no blame.
When things don't go just perfectly, and others get confused,
And say things like "poor child" and other terms they use.
It's okay if you look at me and might not understand,
It's okay if you touch me and even hold my hand.
My life has many obstacles, much more than you could know,
But that's now what I dwell on, it's me, that's all....and so....
Please don't be afraid of me, I want you just to see,
How truly great and wonderful a friend like me can be.

Tracey Porreca

HALLO PAYTON - A NEW RTS SISTER

In October last year we found out that Jacqui's friend's sister had given birth to a little RTS angel named Payton and that she had been transferred to the very same NICU which Sammy spent the first nine weeks of his life in. A few weeks later Jacqui and I went to visit Payton's mommy, Tammy (I did blog about this briefly) but as Payton was still in hospital we just got to see photographs of her and got to know her through chatting with Tammy.

Tammy and I remained in contact but with both of us settling into our "new" RTS lives, never got round to meeting again up until this last Saturday when Tammy, Shawn and Payton came to visit. It was so awesome to share similar experiences and almost get excited (is that weird) when finding out that Samuel and Payton have the same rts-erisms.

When Tammy lays Payton down to change her, she does the same kind of "heavy-breathing" that Sam does and, if you close your eyes, sounds exactly like Sam. She also laughs just like him and has the trademark red mark on her forehead as well as the reflux synonomous with our RTS kiddies and Payton's thumbs are not hectically angulated, but are definitely broad.

Payton was going back to the heart specialist this week to find out if her valve had managed to close on its own, which obviously we are hoping it has so that she doesn't have to undergo any surgery. I will keep you updated.

We managed to snap a few photo's but it was quite difficult trying to co-ordinate the pics as either Sam or Payton was moaning at any given time...aaaah, it was so amazing to be sharing this first-hand with someone else :-)

So, what's new with Smidgey Smurf - well we went for a second opthalmologist appointment on Tuesday at Vincent Pallotti (the hospital where Sam is having his op) and this opthalmologist is also fairly positive that there is no glaucoma at all. Sam's strabismus is still quite obvious but apparently this will more than likely correct itself as he gets older. His right eye is also doing a funny kind of thing - don't know if I can explain it properly but sometimes it appears as though the entire eyeball is "ticking" (rotating very quickly back-and-forth). It is pretty freaky to watch it and worries us a little, but we have told Dr Perrott about it so he can check the necessary on Thursday morning.

I have to admit that up until about 3:00pm yesterday afternoon I was still fighting the urge to phone the hand specialist (*more about this later) doing Sam's op to ask if there was no chance we could wait a year before straightening his thumbs. Sure I know the theory behind doing it now - as he gets older the thumbs are becoming more curved making it more difficult to straighten the bone - knowing the theory isn't helping me feel more at ease though :-) BUT yesterday afternoon Sam was eating a chippie (Simba cheese puff - his mouth sensitivity is so selective) and actually holding it himself but once he'd got halfway through the chip, every time he tried to put it in his mouth his little Sam-thumb got in the way and he just couldn't figure out how to manipulate his hand to bypass that little thumb and get to the chip. So, for the first time I genuinely felt that perhaps it really is in Sam's best interest to have his thumbs done now.

* When we were at the hospital on Tuesday to see the opthalmologist the panic really started setting in, being in the actual place where the operation would take place and all that. We had just left the hospital and were driving home and I just finished whinging to Chris, yet again, about how we should wait before going ahead with the op blah blah blah. Barely 10 minutes later Chris' cell rang and as he was driving I answered it - it was Sam's orthopaedic surgeon (the one who referred us to Dr Carter, the specialist). Long story short I told him I was having mild (yah right) anxiety attacks about the what's and when's and he calmly told me that Dr Carter is one of the best hand surgeons (pretty much reiterating what Matt Tooke's daddy had told me) and that if he felt we had to do the op now, then I had to trust that he knew what he was talking about. It was so weird the way it happened.

So folks, we are moving past me wailing endlessly like a spoilt little girl that I don't want the op now (well, those are my intentions at the very least).

Mmmm...this hasn't been much about Smidgey Smurf....let's try again - Smidgey is still LOVING his food (I don't know what bug has bitten him but I ain't complaining). He has recently started protesting against not only his normal Sam-erisms (getting dressed, sitting, therapy, lying on his stomach) but things like when I need to remove the boat from his hand which "followed" him out the bath, in order to put his arm through the sleeve. Or when trying to put him down for 5 mins after he's being travelling around on your arm all day. He definitely has a very strong will. I am also finding it increasingly difficult to keep him occupied during the day - he requires constant stimulation and activities. But thankfully he is extremely inquisitive about Max, our chinese Chow, and our two kitties, Belle and Jessie, and when I have run out of ideas we basically follow them around so that he can babble and "scream" at them - he goes completely tense with excitement. We've also resorted to hanging a string from the ceiling with bells on it, as well as wind-chimes from the key rack to make our back-and-forth trips around the house more exciting....you know what they say "Desperate times......."

Sam's actually been quite crabby the past two days and is making a new "gesture" with his mouth (almost like clashing his teeth - if he had them) so I am wondering if perhaps there aren't actually teeth on the way. We can see the two little white spots in his gum, but its looked the same for the past couple of months, so not really sure. Well, his corrected age would see him turning one only on the 8 July, perhaps he will have teeth by then after all (although with the amount of shoulder/arm/finger biting he does, not sure if this is something to be wishing for).

On Sunday Ouma and Oupa are coming to overnight by us for Chris' birthday on Monday, as well as to bring us a few tops that Ouma made especially to accommodate Sam's splints and then they will be back again on Friday, the day after the op. On Tuesday I have a meeting with the anaesthesiologist which I am looking forward to (if you can call it that, guess it's the reassurance I am looking forward to). If we make it till then, that is. Grampa told us this evening that he heard on the news (or read in the paper, either one of those two, both of which I never get to do anymore) that some-or-other scientist/geologist/proff-type-person reckons that within the next month either Cape Town (where we are) or Johannesburg are going to be hit with a mega-quake! Apparently Nostradamus also predicted something along the lines of an earthquake in Africa in 2010. Really Dad, if you HAVE to divulge that kind of information could you at least provide more specific details like exactly which city, town, suburb, street, day, time, etc.

Ciao all!

HAPPY FIRST BIRTHDAY SAM!

It's almost hard to believe that it's been ONE WHOLE YEAR since our little Smidgey Smurf fought his way into this world...ONE WHOLE YEAR since we first heard the words Rubinstein-Taybi Syndrome...ONE WHOLE YEAR since we left the hospital without the baby we came there to deliver, feeling robbed and devastated of what was meant to be such a celebrated occasion...ONE WHOLE YEAR since I had a single solid night's sleep (with the exception of that very first night Sammy was born, thanx to a MEGA dose of morphine)...ONE WHOLE YEAR since I battled to fit into our shower (it's a really small shower, okay)...ONE WHOLE YEAR since I had a little Smidgey kicking me in the ribs in the middle of the night...ONE WHOLE YEAR since I sometimes had to get up ten times during the night, still half asleep, to use the loo (we're down to only three times now)...Mmm, okay, guess there have been one or two positives there -just kidding, of course there's been heaps of positives like making new friends (whether it be in person or through cyber-connections) and having this whole new group of wonderful RTS angels enter our lives, who teach us every day about courage, hope, patience, love, acceptance, perseverance and, perhaps the most important, to never take anything for granted and to cherish every moment. Seriously though, thinking back that this time last year our little elf was lying so tiny and fragile in his incubator really leaves you in awe that you have made it so far and not only made it through, but that you've made it through in one piece and can still manage a smile and hey, even a laugh most of the time.

I also can't believe how much Sammy's face has changed since he was born. Of course his "cpap nose" eventually disappearing makes, I think, alot of difference.

So, here we are with our one year old Samuel Christian de Beer (aka Smidgey/Grumpy/Jokey/Barfy Smurf, Little Elf, Little Monkey, Fievel) having just celebrated a whole year of being Sam!

Sam was quite impressed with his very first EVER birthday card which he received all the way from Pearly Beach from his Granny and Aunty Alvie & Uncle Charlie and made sure he savoured and memorised every last word of it, even the barcode on the back (he's sure to be a clever lad this one).

And after thoroughly studying his card he spent some time showing his new friends on Noah's Ark all the other wonderful things you can use birthday cards for (Sam's very into "keeping it green"). Here he's busy demonstrating how to make a.......a.......a......funnel-type-thing?

Another cool new toy that has all sorts of shapes and colours and sounds on it, although the first few days with this toy were touch-and-go as one of the little cars make the sound of a siren which instantly made Sam cry (thank goodness it seems to have passed).

Sam all of a sudden has really started enjoying his baby food (although we're still only alternating between two flavours - oats & honey and creamy carrots & (you guessed it) honey. He even gets excited now when he sees me bringing his little bowl. On Saturday morning I made him pancakes seeing as he appears to be getting over his food-phobia and, if we had to wait for him to get his first tooth I might be too old and bent-over to reach the top of the stove (as it is I barely make it) but it was a no-go, the tiny micro-crumb of pancake hadn't even touched his tongue before he started gagging and coughing. But offer him a piece of cupcake mind you and all of a sudden that hectic gagging reflex disappears. Could it be that my son has a sweet tooth? I really can't imagine where he would have inherited it from seeing as I am a very healthy eater myself (of course my fingers aren't crossed behind my back, really!)

And there you have it....undeniable proof! I wonder what butternut tastes like with honey...and potatoes with honey....and chicken with honey...and pasta with honey!

Sam is still not sitting, although he does occasionally manage a few minutes here and there, but he loves being on his feet...in fact, it's almost a sure-fire way to get him to stop moaning when he's agitated.

Sam's crown that Meg made for him a few weeks after he came home from NICU last year became a little too small (we know that at least one part of his body is growing then), so she was kind enough to make him another one for Saturday.

And yes, we are still doing neuro-therapy every week and even occasionally make it through a few exercises before the scream/vomit assault begins.

And all the hard work (the hard work being the crying and tantrums which he puts a whole lot more effort into than the actual therapy) leaves Sam absolutely exhausted and, on a rare occasion, he even passes out for at least like ten minutes.

Meg had her very first official choir Eisteddford. It was so precious, when they first started singing I became so emotional and then I noticed how the rest of the audience were reacting with delight and loads of "aaawwwhhh's" and that made me even more emotional. This whole emotional thing is really snowballing lately - you should see how I bawl my eyes out every time someone else gets voted out of Idols, regardless of whether I actually liked them or not...in fact, even adverts make me cry lately!

Wordless Wednesday

BOETA DIRK

Sammy was blessed with a brand new cousin last Thursday. "Boeta Dirk", as adoring older brother Hendrik (Jnr) calls him, weighed in at a healthy 3.34kg and measuring 52cm....just 12cm shorter than Sammy - Better get a move on there, Sam.

I don't know which is cuter here....gorgeous little Dirk

or that stunningly adorable smile on Hendrik Jnr's proud little face,

they're both pretty precious!

CONGRATULATIONS HENDRIK & DEIRDRE

and of course

HENDRIK JNR

THE BLESSING OF SUFFERING

I promised myself a while ago that I would stop asking the "Why us?" 's of why we are on this particular journey, trusting (or trying to) that this answer will be revealed at some point along the way. I do believe with my whole heart that our God is not the kind of God that would purposefully "make" a child handicapped, ill, etc purely because He thinks I am a more suitably "special needs" parent than my next-door neighbour. I do believe that tragedies like genetic abnormalities are part of the consequence of the fall of man from God's grace into the luring clutches of Satan those many years ago and that, although He certainly has the power to heal at His will, that God has to allow certain trials, tests and, yes, suffering in order for us to fulfill that particular plan He has for us, whether it be to strengthen our faith, or discover a new life purpose or whatever it might be. But when you are in the throw of a particularly challening stage like we are now with Sammy having being hospitalised again with pneumonia and a severe infection in his upper-airways, when he's so uncomfortable and battling to do basic things like feed, breathe, sleep....then it's not always that easy to rest peacefully on those beliefs. And you look around and see other good followers of Christ also suffering with their own challenges...whether its the quickly failing health of a lifelong partner, the loss of yet another precious baby, the difficulty and unrelenting hardships of trying to pick your life up again from the dark abyss of addiction, .....and sometimes those beliefs momentarily leave our heart and we falter and ask why God's people suffer so?

Edward Kuhlman says, "PAIN is the fundamental human predicament. No-one escapes life without experiencing pain, although many become preoccupied with attempts to alleviate it. Pain is the overriding, inexplicable condition of life...the touchstone of our lives. In this "trysting place" heaven and earth meet....here we meet each other in humanity and, more important, God meets us."

David Biebel writes :

"To know that in my weakness, He is strong.
To learn to trust, even when I cannot feel the ground.
To understand that I am NO master of my destiny.
To become wiser and more real."

"Do not pretend. Do not lie, but look your struggle in the eye, whenever you can, with help if you need it..and slowly, as slowly as necessary, come to terms with it. All the while remember that your life is in God's hands and that He understands struggle and is far more patient, gracious and forgiving than you can imagine."

So today, this is me....being REAL and NOT PRETENDING...because today I am frustrated and exhausted and sad....so sad that my precious, fragile little angel is battling so immensely to get well, because I know we are not yet even a micro-step down the path that we're travelling on, which is going to be filled with far more daunting challenges, and I want Sammy to be as strong as possible so that he can face all future trials head-on. And even though I am struggling a little with God today....I know that He is patient and understands and that He forgives me, as He did both Job and Jacob.

"Praise be the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God."
2 Corinthians 1:3-4

THE BLESSING OF SUFFERING

"Suffering? Really? Are you wondering if this is a misprint? It is not. Of course you don't like to suffer. What kind of fool would seek out pain?

Think about it though - how do you strengthen and tone your body's muscles to make them as effective as possible? You exercise them which takes effort and work and sometimes results in a bit of pain. The work you put your muscles through teaches them to be stronger.

Your faith grows in the same way. The more you are required to walk by faith through suffering and pain, the stronger your faith grows. So, suffering is a blessing because it helps you grow deeper in your faith, lean on God more and trust Him to get you through the difficult times.

Suffering is one of the primary ways your faith will grow stronger. So, as James says, "Consider it pure joy whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything" (James 1:2) "

Hey Guys! How are you all doing? It's been a while, hasn't it? I've been keeping Mom super busy with just generally being me, so she isn't get much time to update my blog...but this morning I decided "Hey, let's give the ol' girl a break" (Of course it helps that Dad's at home to entertain me in meantime). So, anyway, nothing much has changed over the past couple of weeks - I'm still a bit ill, still not loving baby food and DEFINITELY not doing any daytime sleeping, which means that by 4:00/5:00pm every afternoon I am thoroughly exhausted and at any given moment will suddenly just pass out (sometimes mid-scream), regardless of where I am, even slung over Dad's arm. Mind you, I am very considerate of Mom's routine and make sure I don't sleep for more than five minutes so as not to disrupt my supper, bathtime, etc.

I have been working really hard at my neuro-therapy and yesterday morning even surprised Heidi by going the first twenty minutes without any crying or screaming and even rewarded her with an occasional smile. Of course, after those twenty minutes I realised I was neglecting the "show" I usually put on for the other patients in the waiting room and other therapy areas, so quickly made up for my inconsideration by hitting my notorious "window-shattering" high-pitched scream and closed with the vomit-on-the-mat/ball/Heidi routine. I must say, I did myself proud. As much as I hate to admit it - this whole therapy nonsense is actually helping me a little and I manage to sit up unsupported for as long as eight minutes sometimes.

Mom is really battling to find ways to keep me entertained during the day and comes up with all sorts of odd things for me to do, like a playdate with Barney....I mean, seriously, there's only so much interaction I can have with this big, purple, poofey dude and he's even less verbal than me...so as you can imagine, the conversation is just not flowing. But Mom seemed quite delighted (at least one of us is being entertained) and started taking pics so I thought "Why not" and even offered my rattle to Barney to have a go.

Thankfully Mom got the picture that playtime with Barney at this point is just not THAT great, so I was soooooo happy when Aunty Henriette and Janke came to play on Monday. Janke is so cool, she laughs and chats away all the time and even had Meghan joining in the fun (as you can see Meghan has selfishly cut off her long hair - what am I supposed to grab onto now?)

Janke and I were having such a good time, it felt like we'd been friends since birth already....so, just to make sure she knows how much she means to me, I casually placed my hand on her leg to kinda say "Hey Girl...I'm here for you"

Mmmm...this is a really nice colour on you Janke, and the fabric's really soft. Wonder if they make this for boys as well.

Mom and I also attended a really great workshop in the past couple of weeks, given by a wonderful lady by the name of Grietjie. The workshop was all about what sort of toys are best for me and will help keep me as clever as I already am...Mom's already placed an order for a few things, I can't wait till they arrive. I hope she doesn't get any crazy idea's about keeping them as Birthday presents for when I turn one in a couple of weeks time. Mom really liked the workshop and invites everyone to visit Auntie Grietjie's website at http://www.joyfulmamasplace.blogspot.com

Another really wonderful surprise was when Ouma and Oupa came to visit from Stilbaai over the weekend....myself, Meggie and Luke were spoilt rotten again with pressies and sweeties and Ouma and Aunty Janina both knitted beautiful jerseys for me - I felt really special and so loved.

So, that's basically what I have been up to over the last while. We are keeping some special people in our prayers at the moment, like Aunty Janina who had a fairly major operation on Monday, Great-Uncle Andries who has been really, really ill, Aunty Debbie who fell and hurt her leg really badly last weekend, Aunty Cammy who has started on a new journey in her life, Aunty Cindy who is so so so close to welcoming her new baby into the world, Aunty Jacqui as her twins grow bigger and stronger with each and every day, Aunty Tish from our church who has made the ultimate sacrifice and given up her life here in South Africa to become a full-time missionary in Namibia, dedicating her life completely to spreading and teaching the Lord's Word to the people there - what an inspiration she is.

I am sure there are so many others who need our prayers...but I am only little so can't remember them all right now :-)

Hugs & Kisses

Me and Mom

THE LIFE THAT'S CHOSEN ME

For all our "local" friends and family :

Below is a link to a song by Karen Taylor-Good called "The Life That's Chosen Me". It took me over a week to be able to listen to the entire song without being overwhelmed with tears, it is an amazing message to all "special needs" parents, as well as their families and friends.

http://www.youtube.com/watch?v=84FHZhB5_Y

If the link doesn't work, you might have to copy and paste into your address bar.

Enjoy!

THE FUTURE'S SO BRIGHT.......

..I JUST GOTTA WEAR SHADES!

And? So what if they're Build-a-Bear glasses?

You can make any shades look good if you're as cool as I am!

Oh my word, my poor child...the things we do for a laugh (you should see the "show" we have almost every night when getting him undressed for his bath, he has "legging-hair" and "vest-hair" and "shirt-hair".

CONFUSED?

Maybe this will help....

Seriously though, this isn't the first time we've put Meg's Build-a-Bear sunglasses on Sam and he doesn't half mind them - altho obviously we don't want to damage his eyes. Although, taking his light-sensitivity issues into consideration, maybe a pair of sunglasses wouldn't be such a bad idea.

So, anyhoo, Sam is slowly getting over his viral infection (slowly being the operative word). He sounds just like an old smoker in the morning as it takes a good hour or two for him to cough up all the gunk that is blocking his airways (I know - sorry for the graphics). But at least he was healthy enough for him and I to make it back to church on Sunday ("church" meaning that Chris and kids sit in the church/childrens' church respectively, and Sam and I pace out the foyer, the kitchen, the bathrooms (desperate times folks) and inevitably land up in an empty, darkened classroom with me perched on a teeny-weeny kiddie's chair (being a shorty has some advantages) where, two minutes before the end of the service, Sam eventually falls asleep. Yah! Maybe I should arrive forty-five minutes early so I can "con" him into believing that the service has actually started which then in turn makes him think he's fallen asleep at the end of the service, instead of the beginning. Mmmmm, worth some thought...not sure how the congregation will feel about not putting the lights on through the service and the worshipping and sermon being done in a whisper. Maybe I'm expecting too much...Hee Hee!

Seriously though, it was truly wonderful to be there on Sunday morning, Sam and I had missed a good couple of services and we have such awesome fellowship at our church - knowing such a caring, thoughtful and compassionate community has been an invaluable blessing for us.

With Sam being ill, we have also missed quite a few neuro-therapy sessions so tomorrow we are back into the swing of things just with a new therapist for this one time as Cathy, Sam's usual therapist, is not at the practice tomorrow....here's hoping all goes well (for Heidi's sake, not Sam's - his reaction to therapy takes some getting used to).

So, in keeping within the subject of "bright futures", something for the heart :-)

"One of the blessings of knowing God is that your life journey doesn't need to be like a map-challenged journey. A heart that seeks God's direction will be rewarded with guidance from Him because God DOES have a plan for each of us."

Carolyn Larsen

"The more we count the blessings we have, the less we crave the luxuries we haven't."

William A. Ward