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)

Saturday, February 26, 2011

Meg's "Night" Marathon & Paper-Eating Smurf

The last few days have been pretty uneventful...same old, same old. Wed's physio did not go as great as last week, although Sam did not reach his, once usual, over-the-top hysteria he did moan and whinge through much of the session. Thursday was speech, which this time went much better than the previous session. Hey, it can't always be sunshine and roses!

Friday night brought with it the annual "Night Marathon" at Meg's school..."night" meaning from 4:00pm to 6:30pm for the Grades 1 - 5 and "marathon" meaning relay races of approx 200m a turn. Looking at it from a nine year old's point of view - "night" + "marathon" = super excitement. The past two years Meghan was pretty convinced she was going to participate and then both times pulled out at the last minute so when she said she was going to do it this year, I wasn't completely convinced so, although I tentatively considered what options I had with regards to managing Sam for those two and a half hours, I was pretty sure that closer the time I wouldn't need to worry at all. As luck would have it, come Friday morning and along with it a hectically windy day Meghan was determined to be there on Friday evening. Before knowing the weather was going to be so poorly, I had considered taking Sam with us even though I had no idea how I would manage the two bottles and supper he usually has during that time, none of which he will take cold or even room temperature. But with that kind of weather, taking him with was starting to look like not too great a plan which meant Chris would stay with Sam and I would go on my own (as usual). Also not a great plan because our little man IS so fussy about who feeds him.

A quick side-step : in many of the stories our RTS families share is the rather sad reality that, for whatever reason, a "special needs" diagnosis often brings with it the loss of some friends and, sometimes, even family. However, it also sometimes brings with it NEW friendships with deeper meaning and stronger bonds due to your changed circumstances and I truly believe that we have been blessed in this way, many times receiving offers of assistance and just general compassion and empathy from wonderful people we might otherwise never have gotten to know better.

One such person is the lovely mom of one of Meg's best friends (or "BFF's" as Meg puts it) who was really keen to help and so we arranged that Meg would go with Jen-Jen to the marathon and, after giving Sam something to eat and drink, I would follow a little later to at least catch some of the activities and bring Meg home. There was a Plan B though...Plan B was that Brampies was prepared to look after Sam for an hour so that Chris and I could go together to the marathon BUT only if Luke was going to be home to help out, if necessary, and that is eventually what happened. Brampies was SO worried about having to give Sam his supper though, although Luke felt pretty confident about doing it if need be, having plenty of Big Brother experience by now. So, after giving Sam a bottle, off Chris and I went...ALONE....to the school. It felt so completely strange, the last time the two of us were really alone together without our little smurf was when Sam was still in NICU. And we only returned home TWO HOURS later and what did we find? A perfectly content little Sam and a slightly stressed and exhaused Brampies from walking Sam's little 9+kg body around for two hours...hee hee! Sam only ate about half of his supper but we were home early enough for me to still give him a "top up" so all went extremely well. Which means that that much-spoken-about dinner for two Chris and I have been mulling over for the last two years might actually become a reality pretty soon and with Brampies now being a CSS (Certified Sammy Sitter, as dubbed by yet another one of those "lovely moms", Aunty Mandie) we might even be able to relax and take a little more than the forty-five minutes it took us to "down" our sushi the last time, having Sam with us.

So, in closing, some pics of Meg at the marathon and, of course, some random pics of our Smurf.



 Can you spot Meg? She's the "little" one in blue, almost a head smaller than her classmates (I am sure she's so chaffed to have her mom's genes). Here she's waiting for her turn to run, afer she spent the first hour and a half of the evening chatting and socialising.

 Waiting for the baton from her classmate.

 Getting ready to go.....

 Uuhhhhmmm....still getting ready.....

 Okay, S.T.I.L.L. getting ready...all she needs now is to actually move!

 And she's OFF! FINALLY!

Both Meg and friend, Anrich, were bitterly disappointed that they did not win the lucky draw at the end of their race (which they insisted we wait for before leaving). After all, buying one of the like four thousand tickets is practically a 99% guarantee that you WILL actually be getting the prize.

At the end of it, Meg had a great time and I am so glad we did not take Sam with us as by the time we got home my ears were ringing from being subjected to that chilly wind for so long.


 One of Sam's favourite snacks is a chocolate marshmallow egg which, amazingly enough, he very seldom gags on. We spent most of this morning in the shops looking for a new bike for Meg's birthday, coming up soon, so because he was so well-behaved and patient with us, I thought a choccie treat was well deserved by our smurf.

 The treat was over way too soon for our little man, so he thought flashing those gorgeous puppy-dog eyes at me might get him another one!

 And, when that didn't work, he thought he'd try some hand-clapping!

 "Oh come on, Mom! What else must a poor kid offer? A gorgeous smile?"
"Nope?"

 "Oh well, maybe if I shake it hard enough some more will fall out...."

"Desperate times....you know what they say! Surely the thing the choccie comes in must taste good too?"

And, talking about eating paper...on the way back from dropping Meg off at Jen's house yesterday afternoon our little smurf became awfully quiet in the back of the car, after first moaning like crazy at having his travel-entertainment (Meg) gone. When I looked behind, I saw him chewing furiously on something and then, horror of horrors, he started closing his eyes about to fall asleep, with his mouth all covered in something green. I looked in his hand and there was a half-eaten pamphlet that had been lying in the car. Panic set in as I realised that a fair amount of the paper was missing and, with Sam practically asleep, he was either going to swallow it and choke or gag and vomit. I first swerved to the left of the road but then realised there was no place to stop, so swerved to the right again to try and turn off and thankfully the traffic light turned red. I put my hazards on and practically jumped into the back seat and stuck my finger into a now sleeping Sam's mouth. And there, neatly compacted with an astronomical amount of gob, in that wonderful little "cave" that is the high palate of our RTS sweeties was about 90% of the missing portion of pamphlet. Where the other 10% got to, who knows!  I can only imagine that he must have swallowed it. But how my gag-loving, oral-aversion-prone Sam did not gag on the paper I do not know, as at least it would have warned me about what he was up to. Never a dull moment folks!

Monday, February 21, 2011

The Weekend in Pictures : Sam's first EVER swim

We've been waiting F.O.R.E.V.E.R to try Sam out in the pool but, although it's certainly been hot enough every day, the wind is always too hectic for us to give it a go. Luckily there was a fairly mild breeze yesterday so it seemed like the perfect timing. Sam was also lucky enough to have Janke, Uncle Christo, Aunty Henriette, Aunty Cammy and Uncle Damien sharing in this exciting new adventure with him.



 Sam and Daddy, Janke and her Pappa (Christo)

 Janke showing Sam how it's done - you just jump on in!

 Never a wasted opportunity for some hand-clapping!

 Janke and her Pappa


Okay, so I've heard of downscaling, but how are you and I both going to fit in here, Cammy?
And we could at least have got something with an engine!

 Sam was at first a little scared of being in his little carboat....

But soon relaxed a little...

 and was even brave enough to start playing in the water.


 Ooohhh...that darn sun! Where's my shades, Mom?

 Aunty Cammy and Uncle Damien


And, we finally managed to get some pics of Sam pulling himself up on the couch. Unfortunately, I couldn't start snapping straight away from him moving out of his sitting position because sometimes he looks like he'll fall over any second, so have to stay close in case I have to catch him. But at least got these....

 Shimmy one knee a little closer....

 Then the other....

 Lean a little this way....

 Straighten up a bit...

And I'm there.

Note the Barbie doll lying on the couch? An experiment to see if we can distract Sam with rather pulling a doll's hair instead of ours...still working on it :)

Thursday, February 17, 2011

The kinda surgery I like...

Mmm...okay, that's not entirely correct. More like the kind of "notice" I like about an upcoming surgery. So, we were off to Dr dT (orthopaed) today for a general follow-up and to see what's cutting with that little foot of Sam's. He gave Sam a thorough examination first, as usual, and Smurf was just all smiles and charm (which was quite surprising as, up till then, he'd had a sleepless day and managed to fall asleep literally five minutes before we arrived at the hospital). Neck, back and kneecaps all look great with absolutely NO sign of kneecap dislocation (common in our RTS sweeties) and, which he feels, would have started presenting problems now already if Sam was going to suffer with issues relating to his knees. He had a look at Sam's thumbs and feels that, as Dr C has already mentioned, Sam will definitely need another op to further rectify those angulated thumbs. We are seeing Dr C (orthopaed - hands) within the next few days and he will more than likely concur.

Anyway, onto the foot...Dr dT says that Sam has a Hallux Varus on the left foot which does present in a percentage of the RTS kids. He does not feel that the foot itself is deformed and that, should the foot not be so turned inwards, the "bump" on the outside would not be apparent. The Hallux Varus is usually rectified by a surgical procedure called an Osteotomy (not dissimilar to the Delta Phallynx surgeries Sam had on his thumbs). The procedure, however, is usually only done at 3 years of age....so that's an awesome fifteen month's notice!! (BTW - Sam was 21 months on Tuesday). Sure, I'll probably be a little less enthusiastic closer to the time but after the TSC surgery, I feel we can tackle anything. Okay....maybe except for vomiting. In addition to Sam's rather scary-looking hyperextensible elbow joints, he also has a degree of Ligamentous Laxity which Dr dT says can sometimes cause elbow dislocations but gave Sam's a good feel and said they appear fine at this point. He also watched Sam walk a bit and says that he's using his foot just fine and, if anything, the foot might cause the slightest delay with walking but he doesn't foresee it effecting Sam's walking at all. We see Dr dT again in July for more x-rays of his feet and hips (Sam's, not Dr dT's).

On to physio, Sam had an *awesome* physio session yesterday. There were no tears, no screams and (monstrous YAY!) no throwing up. Sam and I have religiously being doing his stretches at least once or twice every day and Heidi said it showed. Sam spent a great deal of time on his knees and Heidi went through the exercise of standing up from a kneeling position...that was just yesterday. This morning I had him on his knees in the same position and very next thing, in the blink of an eye, he had pulled himself up into a standing position!!! I put him back onto his knees and next thing he was standing again...I even tried to take a pic, but he's so quick to get up that I missed every time. Then later this afternoon, he was sitting on the floor with his back up against the couch (sofa) and calmly turned around to pull himself up into a standing position...Oh My, where has my baby gone? So much progress in such a little time, it almost makes me afraid that, after so much bliss, we're going to be dealt a whopper of a blow to bring us back to earth. Well, might as well enjoy it while it lasts then... :)

One issue that is going nowhere fast is, of course, the throwing up. We had a completely vomit-free day yesterday, but made up for by two today. And, yes, I am still doing battle with the whole Pediasure/Nestargel saga. I keep deciding to give up and just revert back to the S26 as I have weighed Sam every day for the past couple of days and he's just stagnating at 9.0kg. But, Smurf having the sweet-tooth that he has, do you think he's prepared to drink the plain ol' S26 after delicious chocolate and vanilla flavoured Pediasure? No way! I tried to weigh him again this morning but I think our scale is on the blink for sure because, after approximately twenty-something attempts, Sam weighed anything between 8.9 - 10.5Kg's (such a small variance, you know). And trying to get Sam to stand still for the 4 seconds it takes to display the weight is another task altogether but eventually about fifteen of the twenty attempts settled on 9.3kg's, so I am going with this one for now. Which then also means that the Pediasure is probably making a bit of a difference which in turn meant I had to give it another go. So tonight I first let the Nestargel cool (which I don't usually do because it starts forming a "film" on the top as soon as it cools down) before adding the Pediasure. I literally just finished mixing it two minutes ago and it looks like it might be the solution. Here's holding thumbs!

Here's an interesting fact : To date I have so far spent approximately 21,600 hours making Nestargel & Formula! Phew! I suddenly feel exhausted....but first, some pics :)

 Brampies is convinced that Sam is going to either start crawling or walking any day now and so spends a decent amount of time each day doing therapy-type play with Sam. Gotta love him!


 This is that precious moment that I missed snapping, but it was from this position that Sam managed to stand up. I'm on a mission to capture the whole thing!

And a random shot of my most scrumptious cutie pie!
 

Tuesday, February 15, 2011

Happy Valentine's Day.....

...to all you lucky folks who got to celebrate it. How'd we celebrate? With three helpings of vomit, of course! Still, I mustn't complain - I did get spoilt with flowers and chocolates. On Saturday afternoon Chris got a bee in his bonnet about us going for sushi - WITH Sam! I was so not keen, even though it had been almost two years since we'd last gone out for sushi (not taking into account the once or twice we'd done take-away sushi, but just not the same). By Saturday Sam had gone three days without throwing up so Chris eventually twisted my arm, we loaded every toy/book/rattle into Sam's bag and looked prepared to last at least forty-seven days out in the wild as opposed to the mere forty-seven minutes it took us to drive to the restaurant, gulp the sushi down (after first dropping one of only three pieces of seared tuna on the floor in an effort to not mess soya sauce on seated-on-my-lap Sam while maneuvring loaded chopstick to mouth - how I could do with an extra coupla cm's on each arm) and drive back home! Yip! You read right - FORTY-SEVEN MINUTES! Must surely be some kind of record? Still, even though Sam complained through most of it and Chris looked like a sadly misplaced Jack-in-the-Box having to keep getting up to fetch whichever one of the things Sam had thrown down, it did sort of feel like an accomplishment that we'd given it a go.

Yesterday morning we were off to UCT Private Academic Hospital for a follow-up appointment with Prof F. Sam was great on the way there, fell asleep after driving for just two minutes so the day looked like it was off to a good start. However, the moment we entered the consulting room he basically moaned the whole time. Thankfully, all looks good as far as the surgery and recovery goes which I could finally start seeing myself in both Sam's usage of his right leg and increased urine flow. In fact, whereas it would take me just one nappy change with all his "dribbling" to get an ample amount of urine to test every week, it now takes me almost the whole week as he wee's less often (than the previous every two/three minutes) but with a much stronger flow. 

Leaving the hospital did not see the end of Sam's mood and he cried all the way home. We were literally about two minutes away from home when Meghan's school phoned to say she'd been throwing up, so had to make a detour to first fetch her. Got home, gave Sam a bottle and some lunch. A few minutes later he burped and out came the first eruption, all over the bedroom floor. Few more minutes later, now crying from the upset of having vomited, out came the second...all over the lounge floor. And so the day continued with our Joyful Smurf. Meghan at least was feeling a bit better by the afternoon and thinks it might have been the Valentine's Day ice-creams they all specially ordered at school which, she says, were extremely rich. In keeping with the mood of the day, Sam was especially difficult trying to get to sleep last night which is when the third eruption happened but thankfully the carpet was spared this time....as it all landed on ME!

Today has, so far, been pretty uneventful with Sam being a precious little angel and fast asleep for the last hour. Tomorrow is physio again and Thursday our appointment with the orthopaed which I am so looking forward to, to find out what we can do to help Sam's little left foot which might in turn, help him walk better and sooner. The story surrounding his foot is still very much uncertain. When he was born the foot was turned inward and upwards at an almost impossible angle. We originally thought it was a club foot but after Dr duT aka "Vaatjie" (orthopaed - feet, etc) sent us for x-rays they actually found that there is no extra bone, etc in the foot so an official clubbed foot was ruled out. Then, with the initial diagnosis of the tethered cord we thought that might be the cause but when the, otherwise normally formed, right foot started turning in as a result of the tethered cord we could plainly see the difference. So his little left foot is simply, unexplainably deformed and I am not sure what one could do about it as the actual angle of the foot corrects itself with stretching and pressure but the little extra "bump" just is what it is. Roll on Thursday!

Sunday, February 13, 2011

Sometimes just missing having a life......

Once upon a time, many moons ago,
There lived a fair maiden, as fair maidens go.
Our maiden's life was carefree and jolly,
Filled with friends a many and just as much folly.
She'd lay for hours watching movies or reading books,
And had plenty of time to work on her looks.
She had time to exercise and take nice long showers,
To visit with friends or chat for hours.
There was time for relaxing and doing her nails,
And time to blowdry away those rat's tails.

Now, her days are filled with nappies and bottles and homework,
And enough sibling quarells to drive her berserk.
Her hairdryer and gym clothes are covered in dust,
Her hardly-used bicycle has started to rust.
Her showers now reserved to jumping swiftly in and out,
With very rarely more than two minutes under the spout.
Her house once spotless, all shiny and polished
Is now hopelessly neglected and scantily furnished.

Now, don't get me wrong...please make no mistake!
Without her family this maiden's heart would break.
They bring her a joy only a mother can know,
To the ends of the Earth for each of them she'd go.
But as much as she loves being a mother and wife,
Very occasionally she misses having a LIFE!
(Nicky de Beer : 13/02/2011)

Saturday, February 12, 2011

Hi-Ho...Hi-Ho...it's off to therapy we go,

With a tear and a scream and some vomit? No! No!
Hi-ho...Hi-ho...Hi-ho, Hi-ho!

Yes, I know we were meant to throw ourselves head first back into therapy last week but with my sore throat and Sam's daily throwing up, decided to leave it for another week. So, we did physio on Wednesday and speech on Thursday. Physio, although accompanied by the squeeling and crying that had become a thing of the past, thankfully brought with it no throwing up. Sam's reaction was a little unexpected as Heidi took it super easy on him with a half hour of mainly just gentle rotations and stretching and not more than five minutes tummy-work. Guess, as with everything else since the op, it'll just take some time for him to settle down again. Speech was no less stressful, as Sam's speechie worked in his mouth (which of course he does so love) trying to desensitise his gag reflex again. He did show off his new hand-clapping expertise to both Heidi and Madre and even added in an extra dose of cute in ST when he leaned forward and gave the little doll M sometimes uses a little kiss! The only thing he's ever kissed before is his books and only after we've told him to (not kiss the book itself but, say, the kitty in the book). Sam's gagging is going to take a bit of work still, although the sides and front of his mouth are fairly okay, the second you cross the midline on his tongue he gags (which does kinda make sense). As for the sensitivity to temperatures (we have to repeatedly heat his bottles and food as the second it starts cooling, he gags) M hasn't really seen this before...but that's our Sam in a nutshell, isn't it? All things unfamiliar and unusual. We have a rather busy week or two coming up with appt's with Prof F, Dr C (orthopaed - hands) and Dr D (orthopaed for everything else) as well as Sam's therapies.

So what else has Sam been getting up to? As I've mentioned before, Sam loves playing on the keyboard although he was recently "banned" in an effort to avoid either him or the keyboard, or both, being hurt. He seems to somehow have understood because I let him play again this week and he was so gentle, whereas he would usually just bash the keys with either his hands or feet, he now plays with one tiny finger most of the time and has fairly mastered the Jerry-Lewis-style of running his finger along the keys. He now also claps for himself every time I say "Clever Boy!"...that's probably the cutest accomplishment of the week, nothing like a little self-praise. Or, self-rebuke for that matter : there's been some talk on the RTS listserv the last week regarding hair-pulling and throwing things, etc. Now, Sam has already started dabbling in both of these activities, especially the hair pulling (which has now claimed TWO unsuspecting strangers - one at the store and one at church, of all places) but also throwing things. I usually put him in his feeding chair while I prepare his cereal, etc and place a couple of toys on the tray to keep him occupied, but all he does is repeatedly throw everything off. The second you pick it up, the second he throws it down again. So, with the listserv talk in mind, every time he throws something off I lightly shake my head and say and sign "No". Now, over the past couple of days Sam picks the toy up, looks at us...first shakes his head...and then throws it off anyway!! So either he's confused and thinks shaking your head is the sign for "please throw it off Sam" or he's just been super cheeky. LOL! At this point, I think it's still very much a game for him as opposed to disobedience and how can you do anything else but laugh?

I've finally resigned myself to the lost cause that is trying to mix Pediasure with Nestargel. For now we do thickened S26 before sleeping and potential throw-up triggers (like car trips, etc) and then just plain old Pediausre the rest of the time and its working okay for now. Also, with the heat, it does help that Sam is having something other than that awful thickened mixture as he still refuses juice and water. I am not sure what he now weighs, he was 9kg on the dot week before last (it's almost hard to believe - seemed like such an impossible target) so hopefully he's picked up another 100gr or so, at least. The Cipla-Actin has definitely increased his appetite, as prescribed by Dr S, and it's wonderful not having to fight with him to eat or drink. We are still doing Hypafix on the cut, for at least another two or three months which works out great, although it's a bit of a mission or remove, the wound is obviously still extremely itchy so it provides some protection from tiny little fingers.

Meg is now settling down nicely into Grade 4 and Luke has written two tests so far, Maths of all things (his real achilles heel) and obtained 85% for the first one and 90% for the second...woohooo! I have been desperately searching for something to do from home which might bring in an additional income into the household, but am really battling to find anything which might work for us. I found numerous adds on a career site stating specifically "Home typist/Data Entry Specialist" and I thought Yay! That sounds perfect as it's something I can do after Sam goes to sleep at night. Sent in several enquiries and almost signed up for the one until the lady responsible was kind enough to be completely honest with me and advised that there's actually very little genuine typing work involved, you basically earn your money by trying to get others to sign up as well. So, still trying to come up with something....have considered 100% personalised printed mugs and plates, etc. (ie, you tell me a bit about the person and I will come up with a completely unique poem for the item) or even thought of special needs "Baby on Board" signs/stickers. Is there even anything like that in SA? If there was, I would certainly buy one. So...any suggestions folks?

Monday, February 7, 2011

It had to happen....AGAIN!!

As I've mentioned over the past couple of posts, Sam's reflux is really challenging us at the moment...I can't remember when last we've gone just ONE day without a full-on projectile vomitting episode. There is only ever one of two triggers - his gag reflex or when he cries and reaches that inconsolable point of no return and the amount of time which has passed since his last bottle/meal makes absolutely no difference to the extent of the throw-up. It is SOOOOOO frustrating.

I thought that, after Sam's very public reflux episode last year in a coffee shop one Sunday morning (see post "The most painful snack ever!" 22 Oct 2010), there could not possibly be a more inconvenient and awkward place to have to deal with vomit. I was wrong! I can probably count on my one hand the number of "family outings" we've attempted with Sam, for two main reasons : he doesn't cope well with unfamiliar surroundings and for fear of a reflux episode in public. But yesterday afternoon we just REALLY felt like doing something as normal as a simple Sunday drive, perhaps stopping along the way for a cooldrink or something. We first Uuuhhhmmm'd and Aaahhhdd'd about it (or rather, I did) for a while and settled on a short, hour's drive past the strawberry farms. Unfortunately Sam was due for a bottle soon, so I took it with, with the intention of giving it to him when we stopped - which I did. We had a bit of a shaky start to our "trip" with Sam hugging the life out of himself in fear, strapped into his old carseat in the back of Chris' car - I've never seen a child so sensitive to his surroundings. After that, all seemed to be going well, Sam even fell asleep on the way back after his bottle which I was really excited about because he doesn't usually fall asleep in the car. When Sam woke up, everyone was busy munching on some or other snack, so I gave him LITERALLY a crumb from a Tinkie cake and just as I was thinking "Yah, this is going really well - something we can do more often", he gagged, coughed and vomitted up his entire bottle all over me, him and basically every inch of the passenger side of the car...right down and into the seat belt clips. The best part? We still had another twenty-five minutes to go until we reached home! It was quite something to experience, nothing like soaking in a Nestargel and Pediasure bath. And, with it being that lovely thickened formula, it didn't kind of just drip off us (sorry for the graphics) but just hung onto our skin, which made for lots of fun trying to keep Samuel from playing in it.

By 8:00pm this evening we were officially about to hang out the "NO VOMIT TODAY!" banner on the front of the house. But alas, having forgotten to touch wood and all that, fifteen minutes later myself, Sam and the lounge carpet were again drenched in it. Aaaarrrgggghhhhh! I have never taken so many showers in all my life, on Saturday I showered twice within one and a half hours and usually just take Sam in with me because it's easier than trying to wash all that goop off in the bath. He quite likes the showering, surprisingly. Mmmm...maybe this is all just a Sam-conspiracy! Well what a way to tell me he prefers showering over baths...I'd best teach him the sign for "shower" soon, in an attempt to save our home from further onslaught. So, we've done vomitting in a restaurant, vomitting in a car...what could possibly be worse than that? 

Other Smurfy news - I mentioned yesterday (or somewhere round there) that Sam's understanding of language is becoming quite exciting. He L.O.V.E.S. Barney's clap-clap song and we watch it sometimes ten/fifteen times one after the other. This morning him and I were playing on the mat in front of the tv, with Barney clap-clapping in the background over and over. After like Take 100, I'd decided we'd (or at least "I") had just about enough purple dinosauring...but Sam was not having any of it. He pointed to the tv, pointed to the remote (for me to rewind to the beginning of the song) and clapped his hands!!!!!!! It was AMAZING!!! It gives you so much hope to see, at least in this area, so much progress. I would be ecstatic if he could just attain ONE new gesture a day. Sure, actual words would be the most awesome prize...but till then I am quite content with having at least one way...any way...to be able to understand what Sam wants.

On closing, we had an extra five minutes or so waiting for Luke to come out today so took a pic of Meg reading to Sam in the car. But, Sam being Sam, was not content with just reading....


And before long.....
....had found something far more entertaining to occupy himself with. At least four/five times on each trip he manages to grab a handful of hair...some mornings Meghan arrives at school with a head of hair which looks like she's been dragged through a bush backwards and upside down. 

Saturday, February 5, 2011

A cotton-mouthed, blurry-eyed, PROUD Mama!

So let's start with "Why cotton-mouthed and blurry-eyed?". Well, because I have managed to acquire yet another charming sinus and throat infection. Yah me - that put's me in the lead for the Who Consumed The Most Amount of Antibiotics Race beating Sam's six courses in eight months by a mere one month, at six courses in seven months. Any suggestions for a prize...maybe a year's supply of probiotics? So this particular antibiotic has the most awesome side-effects including the Me, Myself and Irene cotton-mouthed scene I've blogged about before as well as a healthy dose of blurred-vision which makes typing this post extremely entertaining (we won't mention the fun involed with sending a text message).

Okay...so why proud? Luke Skywalker (not after the movie but because his head is permanently in the clouds) and Princess Meghan have a very "spirited" relationship, to say the least. If there is an opportunity to have a dig at each other or, better yet, get the other one into trouble...they very rarely miss it. Yes, occasionally they get on okay but, as they get older, more often not. A blessing though is that they both completely adore Samuel and have never once shown any resentment towards him regardless of the amount of sacrifices they've had to make in his favour or for the amount of attention he requires from us. In fact, I'd go so far as to say they are both (especially Meghan) a little neurotic about his wellbeing and still "freak out" about things we've come to accept as normal behaviour like throw-ups, apnoea's, etc. Meghan does not take her eyes off Samuel in the mornings on our drive to school (he's had a few apnoea episodes in the car, which really upset her a bit) and she spends a good five minutes before she gets ouf of the car, making sure he has something like a toy or book to entertain himself on the drive home and also to check that the blanket/sun shield is correctly in plave to avoid  any sun getting to him. As I've mentioned before, after I fetch Meg in the afternoons we drive the twenty-five/thirty minutes to collect Luke (except on the days when Brampies is helping out) and time it that we get to Luke's school with just a minute to spare in order to avoid having to spend unnecessary time waiting around and, to this purpose, I've asked Luke to come out as quickly as possible seeing as by that stage Sam has already spent over an hour in the car.

On Wednesday during Luke's last lecture his class had become quite rowdy, upsetting the teacher. Literally minutes before the bell, the teacher informed them that they all had to remain in for a half hour as punishment....and what perfect timing on a day when the temp was hovering around the mid-30Âșc's. Luke tried to explain to his teacher that Sam would be extremely uncomfortable in the car, especially with the still healing wound on his back but the teacher refused to listen to him, so Luke said "I'm sorry, but I cannot stay in today" and left the class. At first I was furious with him for being so disobedient even though I felt it was terribly unreasonable for the teacher to completely disregard teh inconvenience he was causing to pupils who had to catch lifts/public transport. But when Luke told me why he'd left, I had to admit that I was really impressed that he would go to such drastic measures for his baby brother's wellbeing. Thankfully, when Luke had to go see his Section Head the next morning, he agreed that Luke had had a valid reason to leave and just told him that, if he ever finds himself in a similar situation he must first come and chat to him before just leaving. Kudo's to you, Mr S.

Isn't it so sad though how some people really just don't seem to care about others? How difficult is it just to treat your fellow man with common courtesy and consideration? Sam's been having some really distressing apnoea episodes again and, since he's recently become a little too tall for his Snug n Safe carchair (granted - it is technically only meant for 0-9mths) which used to be next to me on the front seat, he's now in his "big boy" carseat at the back which makes it a little more difficult to reach him to "nudge" him to take a breath. On Thursday morning while driving Meg to school this very thing happened...as we were going over a bridge at that moment with no place to pull off to the side and in bumper-to-bumper traffic so making a sudden stop very dangerious, I simply slowd down a little without going below the speed limit, literally for about three seconds, so that I could safely reach back to give Sam's leg a tug . The elderly gentleman behind me in a silver Ford Fiesta, convinced that I had carefully orchestrated this master plan with the sole intention of disrupting his entire day, became so upset that he literally sat centimetres away from my rear-end (or rather, my car's) and then, with screeching tyres, overtook me the second the road widened...only to get caught at the very same traffic light moments later. Inwardly I was saying NA NANA NA NA NA but outwardly I just smiled in his direction, while some time ago I probably would have become just as angry as what he was (but at least justified) and would have given him "the glare" when I pulled up next to him instead. My friend Selwyn mentioned in his Daily Devotional Bible the other day that, regardless of where we stand in our Christianity, many of us (including himself) recognise the "above the water" sins, the obvious ones like jealousy, anger, etc etc but fail to acknowledge, perhaps, a more debilitating sin....a "Little-Known Sin"...the sin of demandingness. He says "You won't find the word in the Bible, but you will certainly see it illustrated there. Demandingness is insisting that our interests be served irrespective of others."

I thought "WOW"! Imagine if our world was devoid of demandingness and there were no incidents like impatient, reckless drivers or uncompassionate teachers, to merely skim the top of the barrel? What an amazing end to aspire to but, oh, how craftily this demandingness sneaks up on you like, for instance, by expecting two unknowing folks to express tolerance and sympathy towards your own circumstances. Something worthwhile to strive towards, this riddance of demandingness.

On a lighter note...Smurf's vomitting is, yet again, in full swing (isn't it strange how there always seems to be more coming out than what went in?) and he has also started a new "thing" where it appears as though he is flinching by closing his eyes and sort of pulling his face funny and then sometimes goes squint when he re-opens them - it has us quite puzzled but only lasts about 2 seconds max, although sometimes he does it five or six times in a row. Mmmm...not much of a lighter note! Anyway, Sam's use of his leg comes and goes although I think I'm past the point of stressing about it too much and literally just take each day as it comes. Sam has also managed to pick up a little bit of weight and now weighs 9kg. Wooohooo! Dr S prescribed a new anti-histamine which stimulates the appetite (we were hoping it would stimulate some increased sleep too, but no luck yet) and it has definitely made a HUGE difference. Most exciting though - Sam's understanding of language literally increases daily, even though he appears nowhere near being able to use it as a form of communication himself. Still, he is quite adept at getting across what he wants us to do purely with his own version of "sign language" (which interestingly enough really only requires one tiny but determined little finger). I am having loads of fun trying to establish a good combination of Nestargel and Pediasure, which needs to be mixed with cold water but, as Nestargel starts forming a type of "film" as it starts cooling, means we have to mix the two while the Nestargel is still warm which then just forms lumps of Pediasure and then just lands up separating in any case. Like I said...LOADS of fun. The Pediasure is also a little thicker than the normal S26 so also have to figure out the right combo of Nestargel powder (where just 0.5grams effects the thickness) to water. At the end of the day, I usually end up with what appears to be a Nestargel-Pediasure Late which looks like this :



Sam still has this adorable habit of, when looking/investigating something, he has to have his face almost flush with the object...kinda like this :

He does it when he plays on the keyboard, looks at a book or even when he's in the bath and checking out the water...which means he occasionally ends up with an ear full of water or a sprinkling of foamy bubbles all over one side of his face.

That's it for now! My eyes do seem to have cleared again, for now, but I am way too tired to go back and check for any typo's - SORRY!