Sam. Conqueror. Overcomer.

On the 15th May 2009, Samuel Christian made his way into this world...two month's premature and in severe respiratory distress. Within hours, Sam was diagnosed with Rubinstein-Taybi Syndrome - a very rare congenital disorder, of which little was known. The diagnosis together with the immediate challenges Sam faced to thrive became our core focus and it was with joy and thankfulness that we eventually brought Sam home, after nine weeks in the NICU.

As time pressed on, it became obvious that Sam's development was falling behind that of his RTS peers. Shortly before his 5th birthday Sam underwent a brain scan and it was confirmed by a paediatric neurologist that in addition to Rubinstein-Taybi Syndrome, Sam also has Cerebral Palsy related to his premature birth, as well as Autism.

This blog chronicles our journey through these challenges...
SAMUEL - COMPLETE IN GOD
Our world has crashed, been blown apart.
This can't be happening....why us? Why now?
Your fragile life shaken before it could barely start,
How do we get through this...please, Lord, tell us how?

Drowning in our sorrow, waiting for answers that just don't come.
Our baby "special needs"? It simply can't be true!
The heartache overwhelms us, we're left feeling cold and numb.
The diagnosis tells us little - these children are so few.

But then we finallyget to touch you, to see your precious face
And all the heartache and questions fade, replaced with love and pride.
It's obvious from the very start you're showered in God's grace,
And with His love and guidance, we'll take this challenge in stride.

When once we couldn't pronounce it, Rubinstein-Taybi's become our norm.
When once the future seemed dark, we now welcome the journey as having an RTS angel brings lessons in unexpected form.

Our world has crashed, been blown apart!
This IS happening....to us.....right now!
We've been blessed with a gift, so precious from the very start. How do we get through this? Here's how.....
By believing in a God, so merciful and great,
By trusting that He's right beside us as we journey through the narrow gate.
By believing His love for us is not determined by a human frame,
By trusting that we draw Him near by merely calling His name. This precious baby we asked God for,
Prayed he'd be perfect and complete.
And, as Samuel means "God hears", He's laid His answer at our feet.

(Nicky de Beer : 27/05/2010)

Friday, June 25, 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!!!

Wednesday, June 23, 2010

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!

Sunday, June 20, 2010

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!

Wednesday, June 16, 2010

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).

Thursday, June 10, 2010

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)

Wednesday, June 9, 2010

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

Tuesday, June 1, 2010

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