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)

Monday, January 30, 2012

Bathing Bloopers

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

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

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

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

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


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

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






Who needs those R299 "crawling buddies" from Toys R Us when you have a Meg
(when she's healthy of course)

Thursday, January 26, 2012

Conquering SPD

I have mentioned several times on this blog just how challenging I find dealing with Sam's Sensory Processing Disorder and have even stated the extreme on occasion...that sometimes I find the SPD more debilitating than his RTS. Naturally the more extreme statements are usually made after a particularly difficult incident or phase, but nevertheless I have no doubt that SPD on it's own, without any other additional diagnosis or condition, could handicap a child severely enough to cause major neurological delays and social complexity. With Sam's SPD going through erratic changes, almost on a daily basis, I have been trying to read up as much on the condition as I can in the the hope that I might just discover a course of action we might have overlooked or any other useful piece of information that might prove helpful. I have read many accounts of what it feels like to have SPD, some of which report that having SPD is like :
  • having a whisper sound like yelling
  • feeling like your clothes are all made of fibreglass
  • being in a moving car of which you have no control with none of the equipment working properly
  • not being able to sense your body's position in the space around you or as one person put it "You felt like someone had given you a shot of Novocain in your backside so you couldn't feel if you were sitting in the middle of your chair or the edge and you fell off"
  • You could see obstacles in your way, but you could not make your body move the direction you wanted it to to avoid them.
  • You tried to drink a cup of water from a paper cup, only you couldn't tell how hard to squeeze it to hold onto it. So, you squeezed it too hard and the water spilled all over you. The next time you didn't squeeze it hard enough and it fell right through your hands and onto the floor.
  • Every time you tried to write with your pencil, it broke because you pushed too hard.
  • The different smells in a room can make you utterly nauseous.
  • You can't focus your eyes on any one thing because everything and everyone in the room catches your attention and your eyes just go there instead.
  • The lights are always so bright you have to squint. In fact, one dad said that his daughter's SPD was so severe that if sunlight touched her she would scream as if in pain.
  • Every time someone touches you, it feels like they are rubbing sandpaper on your skin. 
  • The tag in the back of your shirt makes you feel as uncomfortable as you would if a spider was crawling on you and you couldn't get him off.
  • You wanted to write something down but it took you at least 5 seconds to form each letter. You can see the letter in your head, but your hand will not go in the right direction to write it.
  • Having constant motion sickness
Unfortunately there were no new methods of treatment waiting to be discovered by my eager eye, just the usual advice to seek the help of an occupational therapist. The thing is that we've being doing pretty extensive OT for almost exactly a year now and, to be honest, just finding our way back to our original starting block a year ago would be an improvement right now. I have to confess though that about a week or so ago I got so fed up with our, seemingly useless, sensory brushing that I half convinced myself (okay...maybe a little bit more than half) that the sensory brushing was perhaps doing more damage than good. I even found myself trying to replay those first few instructive OT sessions over in my head in case I'd perhaps, in the interim, managed to completely hash the whole process up and was now making Sam more defensive by incorrectly brushing him. I had two fairly convincing reasons encouraging my wayward thinking though with the first being a rather embarrasing situation at Meghan's school one afternoon when I decided to take Sam out of his carseat to sit upfront with me while we waited the half hour until the school bell rang. I agonised over the decision a good few minutes knowing that trying to sit Sam on your lap in a car lately is usually taboo (which isn't all bad because it acts as a built-in safety mechanism ensuring that he is always in his carseat) but was pretty confident that if I moved slowly and carefully enough he would be okay. So, in clear view of all the other cars parked at the school (largely due to the overly cautious and timeous moms the first week of school usually brings with it) I lifted Sam from his carseat in the back and tried to get back into the car on the driver's side. It is at times like this when referring to sensory defensivenes seems so much less appropriate than simply calling it blind fear. Sam clung onto my neck and hair and ears and any other part of me he could claw onto as if the dashboard and steering wheel had suddenly grown a giant set of gorging, hideous jaws and were trying to devour him alive. I persisted for about five minutes but by then Sam had not eased up so I decided to rather put him back into his carseat...noting rather anxiously that the carpark had filled up even more.

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

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

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

Wednesday, January 25, 2012

Grumpy Smurf

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

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


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


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


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

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

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

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

Thursday, January 19, 2012

Yet another postponement....

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


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


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


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


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

Tuesday, January 17, 2012

Confucius says.....

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

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

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

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

Wednesday, January 11, 2012

Haven of Hope

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

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

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

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







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




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

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

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

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

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

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

Monday, January 2, 2012

2011 has left the building....

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

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

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

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

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

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

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

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


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


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

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

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

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

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

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

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