Walking, horses and toe-padding

So....



 

 

Sam has his walker *does really goofy-looking smurfy-dance *  (Mom, not Sam) Whoop Whoop!

 

And he is loving it. So much so that I took this awesome LITTLE video of him taking a stroll down the road with it. But after the video still not having uploaded after almost an hour, I had to conclude that the darn thing was not THAT little after all. Eish. Will try again. Sorry Lynn ;)

 

At least we have a pic.  We have adjusted the height of the walker somewhat which makes for a much more comfortable gait and way more confidence. At the moment, the wheels can only go straight, which we thought might be a good idea at first so as to avoid Sam having some rather damaging (to both himself and the household contents) bumper car episodes. But alas, the little dude is becoming very frustrated at not being able to go exactly where he wants to and so tries to lift the walker and shift it himself, which works okay some of the time but more often than not results in him overbalancing.  The great thing about the walker is that it has these little reverse brakes on the wheels so the wheels actually cannot roll backwards at all which means when Sam does lose his balance he simply grabs onto the walker and steadies himself quite well.  I was considering taking the walker with to our physio session this morning, just to show Heidi and have her confirm that the height and everything else was as it should be. However, we ran out of time (largely due to Sam's new morning ritual - more about that later) so I decided having to first negotiate fitting the walker into the car would just make us even more late. From next week though I will make sure we have enough time to pack the walker in as when walking with the physio's trolley, Sam lost his balance, immediately grabbed the trolley to regain it and instead landed up toppling backwards as well as pulling the trolley over his little feet in the process. 

 

Overall, having the walker is such a blessing. It is going to be so beneficial to Sam.  I really can't believe I had developed such a mental aversion to it. And it's an extra blessing that, Sam being Sam, he has become so comfortable with it so quickly, as opposed to shoving it into one of his sensory no-no's along with sitting, holding his own bottle, lying on the floor, hairdryers, vacuums, balloons, etc. . I will most definitely take another video ASAP...just perhaps a little shorter...and post it :)

 

Sam and Meg had another riding session on Saturday morning. This time Sam rode with Elbie. Oh, he is LUVIN' all the attention from the girls, little charmer. And the colour-coded hats was purely coincidental by the way.  The weather played along beautifully, pleasantly warm with loads of clouds to avoid having to stress about sun exposure.  Yet again, Sam adored his time at Haven of Hope. And, an unexpected advantage, having to run alongside the horses to keep up is providing mom and dad with some much needed exercise. 

 

Yet another love affair developing...while Aunty Cheryl kept checking in to make sure her baby was doing okay. What an amazing group of ladies at Haven of Hope. Love you guys xxx

 

 

Meg feeling a lot more comfortable on Knight and even managed a little independent riding towards the end of the morning.

 

So, Sam's new morning ritual?  As you all know by now, Sam's still-not-resolved sleeping issues usually result in me putting him in our bed (Ja Ja! Co-sleeping is bad) to a)avoid him shattering the bones in his hands and arms with the sheer force by which he slams them into the side of his cot and b) in a feeble attempt to try and get something remotely resembling sleep myself. Which means that every morning Sam wakes up in our bed and insists on being delicately transitioned into the new day with some cuddles and then some i-padding before having to get up and face the big bad world.  And, even more entertaining is that he's taking to i-padding with his toes.  Because being somewhat "different" is not enough...he HAS to go the whole hog. 

 



 

 

 

Back to *BLESSINGS* (Okay. So the "flow" of my posts needs a little work lately. Hehe)

 



Both Sam's physiotherapy costs for the entire year and the cost of the walker have been gifted to Samuel by members of our families.  As you can imagine both these costs are substantial.  There are no words which can adequately express our gratitude and appreciation  (you know who you are xxx). The best we can offer is a heartfelt and emotional THANK YOU at lifting such a heavy burden from our shoulders. Does the Lord not work in truly wonderful ways? xxx

Sammy Singing a Lovely Song

Sam has being making a new sort of sound. Although I know that any form of verbalising is in no way an indication of whether Sam will speak one day...his "talking" is still terribly amusing and oh-so cute.

We FINALLY made it out to Haven Of Hope Equine Aid Centre this last Saturday.  We have not been there in forever. Sam had such a good time, he even started falling asleep mid-ride.  And never a wasted opportunity for therapy, at one point Thembi's stride slowed down a little but Sam's little body kept on with the "rocking" motion which is apparently really beneficial for his walking and gait development. 

Sam and Aunty Cheryl on Thembi, completely relaxed and enjoying having a far less anxious support behind him, than his Mom ;)

Meg on Knight for the first time...rather chaffed with herself that she's riding the beautiful creature she once saw as being terribly intimidating

Aunty Marili and Sam's friend Antoni xxx

Neil and Elbie, part of HOH's support, doing an awesome job leading Thembi and Jabu for our boys

Talking about walking and gaits...so Sam went to test-drive the walker Solutions had sourced for him. And it was a perfect fit.  Sam took to the walker immediately, doing a couple of laps around the shop amidst cheering from us, the Solutions' staff and even a few contractors attending to some renovations on the premises.  The walker has been undergoing some "pimping" to make it even more comfortable for Sam and is now ready for collection.  We can unfortunately only fetch it tomorrow morning...watch this space for pics :)

Sleeping : Sam had seven absolutely awful nights...throwing himself violently into the sides of his cot for hours-upon-hours.  He had a nasty fall on Wednesday morning (last week), slamming his chin and chest into the tiled floor at home. Since then he repeatedly signs "sore" but his complete comprehension of the "sore" sign is a little troubling lately. Sam signs "sore" for pretty much everything now...everything which possibly makes him sad or distressed...like having to go sleep, not wanting to eat, etc. Anyway, I have worried that perhaps there is an underlying injury from the fall which is bothering him, although he still drinks his bottle and does chew. He just seems to be constantly fiddling his mouth, quite often flinching or in obvious discomfort.  When we saw the dentist at the end of last year, she did point out that Sam still had a few molars to grow into...so this could also be the problem.  He's also battling with a bit of a nasal drip and blocked nose at night which could be causing a bit of a sore throat. Urrrggghhhhhhhh! So tired of guesswork.
But...and it's a BIG OL' BUT....last night Sam went down at about 8:30pm, did not rock/throw/bodyslam himself once during the night and only woke up this morning when I physically had to wake him just before 7am so we could make it to OT on time. 

Awesomeness....as usual, I cannot pinpoint any physical thing I did remarkably different, except for this one thing.  Usually when I pray at night, I start with my "thank you"'s and then move on to my petitions. However I have to reluctantly confess that more often than not, I fall asleep before I've even made it through half of my petitions.  (Embarrassing but true <BLUSH BLUSH). Last night, after experiencing some really scary sleep-deprivation behaviour during the course of the day (especially when driving from physio yesterday morning and finding myself repeatedly drawn to the righthand curb the whole journey) I excused my self-absorption to the Lord and could only manage a pitiful "Dear Lord, please let us have just one night's good sleep...for both mine and Sam's sake".

Need I say more? 

xxx

Roses are red,

Little smurfs are blue!
I'm almost certain
That something's on the brew!

Something is most definitely bugging our little smurf :(  He has been really moaney and whingey this past week, but most frustrating is his sleeplessness. We've gone through this before a few months ago where he spends hours upon hours at night thrashing and whipping himself around. I cannot leave him in his cot because he inevitably gets hurt, so he lands up in the bed which means I spend a large part of the night covering my head for protection...kinda like in those war movies when the soldiers crouch down, arms draped over their heads, quivering in fear...except it's little hands and arms I'm trying to avoid and not grenade-debris. Mmmm...which brings to mind helmets - perhaps worth a consideration? Although I can't imagine how comfortable I'm going to be sleeping with a helmet on. By Saturday I was pretty sure I'd be waking up....uhhhh, let's rephrase that...getting up ("waking" would imply that something remotely resembling sleep takes place) with a blue eye one morning in the near future - watch this space!  So again we're faced with the frustration of not having Sam be able to tell us what it is that's irritating him, if he has any pain or discomfort...or whatever. I had an idea it could be his ears because the last time he carried on like this at night, his ears were filled with fluid. But our RTS kiddies have these really awesome in-your-face ear canals and if you have a small and powerful enough little light, you can actually see quite a decent amount of what's going on in there, although obviously not entirely what condition the eardrum is in. I could see, though, that the little grommet/tube is still securely in place on both sides, there's no fluid or anything leaking out which presumably would happen if there was something funky happening in those ears. Sam's tonsils are looking much better than they have in a long while, still slightly enlarged but not at all red and minus those little white follicles. Urine tests check out fine - so I am good and solid stumped (Yes, again)...and can do nothing more than just wait it out and hope that whatever the problem is, it will either blow over on its own or reach a point (like a fever or obvious infection) where we now know for sure that Sam has a good reason to have taken on his Grumpy Smurf persona again.

Grumpy or not, we headed off to Haven of Hope on Saturday morning...moaney, whingey smurf in tow (or should I rather say...on arm) with the hope that perhaps a little interaction with his equine friends might improve Sam's mood. However, Sam seemed to prefer staying in the car watching his Teletubbies dvd (oh the joy...just can't escape those "hawwo-ing" little creatures) while Meg and Chrisna had an awesome time with the beautiful Prince and rather-cheeky Thembi. Every time I ventured near one of the horses to just say "Hi" and have a bit of a petting, Sam protested and, ironically enough, the only one he seemed willing to have anything to do with was Strawberry the pony. In Sam's defense, the wind was howling quite hectically and the weather was a little miz so perhaps he just wasn't in the mood to be outside...or inside...or awake...or asleep...or left to entertain himself...!!!! H-E-L-P!!!  (Hee Hee)  Hopefully our next visit to HOH sees little smurf in a much better mood!

Surprisingly enough Sam had a relatively peaceful sleep on Saturday night and only woke up after 8am...which was wonderful for me, but not so great for the little doll Sam kidnapped from our church's cryroom last Sunday, which we intended returning this weekend. The good news though, despite Sam's clingy and challenging mood continuing through the rest of the weekend including last night, is that I will soon have my rugby-player physique back...particularly the neck and shoulders...as little smurf (who just doesn't seem so "little" when you're carrying him around on your arm for a good eight to ten hours a day) has decided to revert to his original method of falling asleep - which is me shushing him in my aching arms, singing horrendous, out-of-breath renditions of "The-Wheels-on-the-Bus" or "Mocking Bird". Nothing like a little regression to give you a swift kickeroo on the rearend as a reminder to completely and totally cherish progress when it happens.

Couch-Potato Smurf

Soon-to-be-renamed Spice!

The latest arrival at Haven of Hope, all the way from Stilbaai - Knight!

Thembi and Dollie watching Chris watch them...while waiting for the girls to return from their ride

A brief moment, en route to see Strawberry, where Sam allowed Chris to carry him.

He looks so tiny for a little boy who is turning 3 years old in less than a month :)

So, that's been our week in a nutshell - obviously with all the usual therapies and, now that the school term has started again, afternoon activities for Meg and more of the same for this week. On Thursday, Sam has a dentist appointment which I am really looking forward to. Yes...really! Sam's teeth have taken a real beating with all his antibiotics and acid reflux and lost a large part of his front tooth when doing some mouth-stimming on Nemo (Sushi anyone?). I have been dreading the inevitable dentist's appointment but after spending ages Googling and asking both nearby special needs schools and some of Sam's medical team for a referral to a dentist who specialises in children and has experience with special needs kids, Sam's Aunty Anthea referred us to a lovely lady, Dr Shirley Lim, who is coming out all the way from Hout Bay to see Sam in the comfort and (taking Sam's SPD into consideration) security of our home. Once Dr Lim has assessed what treatment Sam requires, she has also advised that when Sam has his foot surgery at N1 City in September she would be prepared to travel out again to do the necessary work while Sam is in theatre - so love avoiding unnecessary anaesthetics!

Busy Smurf

Little Conqueror Smurf has been somewhat busy during the past week. On Saturday morning, now that Sam's health has been playing along, we paid a long-awaited visit to Haven of Hope Equine Aid Centre. We carried with us juice bottles, sunblock, Sam's iPad (of course - we seldom go anywhere without it nowadays) and the very realistic expectation that Samuel might only last a half hour on the farm before becoming niggley, forcing us to come home. The first hour was spent re-introducing Sam to the farm and especially Strawberry, the little pony we hoped Sam would brave a ride on :

But while Sam did manage a very strained, anxious attempt at sitting on Strawberry he did not seem at all comfortable and quickly wanted to get off again. He even refused to pet her, despite lots of encouragement. We kind of resigned ourselves to the fact that the only ones benefitting from any riding that morning would be Meghan and Chrisna and Sam and I settled under the gazebo with the iPad to pass the time away.

After a little while I went over to say hello to "the Prince"Jabu and quite spontaneously and without any prompting Sam stretched out his hand to touch the beautiful creature...

...and without any hesitation joined me on a short ride on the Prince, even occasionally stretching out his hand to pet the horse's mane (and suprisingly enough not even once attempting to pull it).

Being able to just get out of the house and enjoy the company of the horses as well as Aunty Juanita, Aunty Maryke and another lovely lady named Tanya, who took to Sam in a very special way, was awesome...we hope to make it out to Haven of Hope again really soon :)

With all having gone so well on Saturday, on Sunday morning we decided to push our luck and try and attend church as a family for the first time since the 4th December. Again, Sam surprised us and made it through the entire service with the help of his (muted) iPad which was wonderfully tolerated by the kind people sitting close to us. Last night our church hosted a Passover Dinner which we attended with Sam, who was an absolute little star the whole evening and charmingly smiled at anyone who happened to give him even the slightest bit of attention. By this morning Sam seems a little unsettled and has had a very restless night so perhaps all the changes to his routine are now taking their toll, perhaps calling for a quiet few days over the next week or so, but we can hardly complain. Sam's system has most definitely kept itself strong against the tummy bug that Meghan and I had which means Sam has now had about three consecutive "illness-free" weeks which for some might not seem much reason for celebration, but here in Smurfville it most certainly is not only reason for celebration...but reason to be truly thankful for all the prayers which are still being said daily for Samuel.

There has been quite a bit of talk recently on the RTS listserv regarding one of the more worrying side effects of the longterm use of Losec (Omeprazole) being that it prohibits the efficient absorption of Vitamin D, resulting in weakened bones which for some of Sam's RTS siblings, has proven quite troublesome. Even before this matter came up recently, I have never felt completely comfortable with the amount of medication Sam has on a daily basis and quite some time ago (probably about 18months) actually did try and wean Sam off the Losec, which promptly resulted in the one and only time that Samuel ever suffered from aspirated pneumonia. Apart from that short break, Sam has effectively been on Losec for a good two-and-a-half years so I thought it might be a good time to consider another attempt at weaning him off, perhaps with the help of a natural remedy this time. Aloe Vera Dew was strongly recommended as a good alternative by most of the moms on the listserv, most of whom are based overseas though, so when we went off in search of the Aloe Vera Dew the closest alternative we were offered was Aloe Vera juice of which 250mls of the bitter liquid has to be taken at a time...not going to happen with our Pediasure-only drinking little man. As a last resort, we took a super-short visit to a not-so-local shopping centre last week.  Super short because while our travelling time was approximately 30 mins, Samuel lasted a total of about 3 minutes in the actual centre.  Shopping centres are just one of those places where, healthy or not, Sam will struggle to cope...and quite understandably as I can barely tolerate them myself and (as far as I know) I don't have anything near the amount of sensory issues Sam has. Anyway, despite having to leave early, the trip seemed worth the drive as a natural pharmacist recommended something called Iberogast as a natural alternative to the Losec. Before beginning the weaning-off process, I thought I would first use the Iberogast in conjunction with the Losec to first make sure Sam's system will tolerate it. Wednesday afternoon Sam's tummy was making some really strange noises and rumblings and he's not eating and drinking 100% so now I've stopped the Iberogast again, will wait another day or two to see if Sam's tummy recovers and then will try and introduce it again, in case it is something else that is ailing Sam. If all else fails I'll probably persevere with the Losec a little longer and then towards the end of the year, by which time Sam will have been on it for just over 3 years, will try weaning him off without an alternative. The other option is another barium swallow study which might just surprise us by showing that Sam has managed to outgrow the reflux, but instinct tells me he does still have at least a degree of it at this point and, with Sam's foot surgery in September, I am desperate to keep all medical procedures in the interim to the absolute minimum - unless life threatening, of course. But there are many of Sam's RTS siblings who have been on Omeprazole for way longer than Sam so I don't believe that prolonging its use by another six months or so is going to make that much of a difference now. To be on the safe side, I will mention all of this to Sam's orthopaed when we see him in a few weeks time.

Tuesday morning sees the start of the second school term and we jump straight back into OT on Tuesday morning as well (after bunking OT last week on account of my birthday) but in the meantime Smurfville wishes each and every one of our readers a Blessed and safe Passover weekend xxx

Haven of Hope Equine Aid Centre

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....