H'so Samuelson

Only eight more sleeps till I lose my not-so-airy Aircast *happydance Honestly, I really thought the 'air' in Aircast implied that the boot was super lightweight. It isn't. I was beyond despair the first couple of days thinking the injury was so much more devastating than I'd thought if instead the boot seemed downright chunky and heavy, anything but airy. Was I ever amused to finally discover the little dial and round knob-type thing actually pump air into the cast. Aaaaahhhh...air! I am at least thankful that the boot enables me to move around without crutches and I've even been able to carry Sam a little. Any time off those knees is a huge relief but he seems more and more reluctant to walk with us. So we've created a really complex (not really) little game which involves whoever is willing to walk in front of Sam chanting "Left. Left. Right. Lift" and on cue the lil smurfy dude will lift his right leg, but only his right leg. If the chant stops on the wrong leg he takes great pains to switch over.

Somewhere out there there's a village with a karate kid-deprived parking pillion with your name on it my boy! 

To say there's an element of cabin fever in Smurfville would be an understatement of note so we thought it would be a good idea to go watch the last hour of Meg's evening marathon at school last Friday night. We drove the exact same route we've driven at least once every school day over the last seven years so a vomit episode triggered by encountering unfamiliar surroundings would not be called for, right? Wrong! No.1 it was dark and No.2 we turned through a different gate. Seconds later the little dude was hurling his dinner out.  Just a coincidence,  you might think...a case of bad timing perhaps? On Saturday morning we popped down to the local traffic department to collect my renewed driver's licence (you know, in case I get pulled over while going nowhere). Pull into the parking lot, I open my door and there the flood erupts. Nevermind the Terminator... The Vominator is back, in full force. Obviously with Sam and I effectively being homebound and him not needing to deal with the usual stress he faces with any sort of social encounters, we're going to find ourselves back at square one when I can eventually drive again. Something to look forward to.

On Monday Sam had an appointment with a new Prof Paed. We were a little anxious that upon entering the rooms Sam would instantly start throwing up. Luckily there were too many distractions. New Prof Paed suggested a new reflux med for Sam which is wonderful. I've wondered for some time whether Sam's sleep issues aren't related to his reflux but honestly didn't know there's an alternative to Losec. Because there's no chance that Sam would simply swallow half a Losec mup, I dissolve it in a drop of water and add it to his food (it doesn't go through the teat of a bottle) but if the Losec is not ingested with 10-15 minutes it basically becomes ineffective and Sam seldom finishes a meal in less than 30 mins nevermind 15. So the new med, Nexium, which is still Omeprazole, is simply mixed with a little water to form a completely flavourless syrup and given just once a day. Works like a dream so I think we've got the reflux sorted. Prof Paed shared the opinion of a good friend(who also happens to be a fab paediatrician) that Sam's urinary retention issues are almost certainly related to bouts of constipation Sam's had trouble with. A quick look in Sam's ears confirmed that the right grommet has already fallen out which is a bit of a bummer. The right ear is the problem ear and tends to react the moment the grommet falls out which is why the ENT  apparently used a different tube in the hope it would stay in place for at least 18 months. It's been only 9 months since the current set was inserted :(

Sam weighed pretty much what he has for the last six months, round 15.6kg's and stands just over 95cm's tall. That's just 58cm's shorter than his mom. Prof Paed asked if he could discuss Sam's sleeping issues with a colleague which had me impressed with both his caution and humility at not suggesting an immediate remedy. On Wednesday he called to say they'd come up with a possible option called Stilnox but that he would want to admit Sam overnight should we decide to give it a try as he is wary of Sam's reaction. That had me a little anxious but again grateful for his caution. At the end of the conversation we decided to wait it out a little longer before trying the Stilnox. 

Tracey from Iris House was spending the morning with Sam so I was able to have an attentive conversation with Prof. Shortly after the call I sat with Sam and Tracey and noticed Sam slipping into a sort of 'blank episode' which he's done before but not for quite some time. I've known for a while that many of Sam's RTS siblings suffer with absent seizures but have never been quite certain whether Sam's blank episodes were the same. Tracey confirmed instantly with one look at her that it was in fact an absent seizure and then confirmed it verbally too. At least now I know what to watch out for but there have thankfully been no more. 

Meg has been off on a school camp for five days, arriving home on Friday accompanied by a snotty nose, sore throat and coughing. Not great on its own but made more worrying by the fact that we leave for her hockey tour on Thursday. We've already joked about what kind of 6-7 hour trip we're in for if Sam's going to vomit with every unfamiliar parking lot we pull into. Yikes! 

To emigrate or not to emigrate...that is the question

It has recently come to my attention that my sleep pattern is no longer compatible with the South African time zone. I am generally wide awake from 12 am onwards so the only reasonable solution, at this insane hour, seems to be emigration. Perhaps spreading three kids out over sixteen years was not such a good idea...as each child eventually outgrew the early childhood sleep and health issues (asthma with Luke; croup, sinus and ears infections and eczema with Meg...and now Sam - nuff said) I went and had another baby. So after 20 years of motherhood assault my sleeping mechanisms have thrown up their hands and said 'you're on your own you crazy woman! '

Or it's the fact that at the ripe age of almost 40 I have a strict bedtime of 7:30pm thanks to Sam not being able to sleep on his own and refusing to go down with anyone else so, only ever having needed 4/5 hours sleep at night, I am bright-eyed and bushy-tailed by 1am (not so much by 2:00pm-ish tho). And this horrid cast and the subsequent rash it's caused on my shin doesn't help. Neither does the fact that Sam has upped his game from mere bodybashing to Tazmanian Devil style body-whipping. Why, you might ask. Because I have no faith in my own judgement, that's why. Chatted to Doc Paed last week about Sam's urine retention problem arising again (Did I blog about that yet? Sam went a record breaking 17 hours without a drop of wee) and mentioned that the lil smurfy dude is still not sleeping. Doc Paed asked if we should try Phenergan. With having a maximum two/three night success rate with Aterax and Valergan resulting in nothing less than an impromptu circus, the mind screamed DON'T.DO.IT!

The voice said...sure!

First couple of nights there was sleep but nothing fabulous. Last night the Tazmanian Devil arrived, literally whipping himself up the sides of the bed, pulling hair and trying to shred pillows with his bare teeth. So when preparing to get Sam into bed last night, Chris asked 'Phenergan?' (a legit question). The mind screamed DON'T.DO.IT!

The voice said...sure!

I've acknowledged I've been a long time sufferer of FIM Syndrome (Foot-in-Mouth) and my brain and mouth seldom seem connected but this is just ridiculous.

Just 1hr and 23min till my alarm goes off and 23 mins till the end of this particular loadshedding block, which never happened Woo hoo! Now I can get up and go to the loo. Didn't want to chance it during the scheduled times in case they decided to cut the power just as I'd stumbled up onto my crutches. My foot keeps going numb, especially at night, which is a little worrying as my cast is definitely not too tight. Even more worrying is Sam's lack of exercise since I fell. Before, he and I would walk around the house a good few times every day but he refuses to do it with anyone else and while I stretch his legs during the day, it's just not the same. I can already feel his tendons stiffening but what can I do? I can't even keep my own balance without crutches at the moment so don't feel comfortable trying to hold Sam up just yet. He's probably going to need more intense physio rehab than me :(

Sam's only happy place at the moment :

Twerking and ending the word

I wouldn't consider myself a term-o-phobe...unless it's a word meant in a derogatory way of course (I have no actual clue whether that's even a word so don't quote me. Would jump up and grab a dictionary quickly but with a 3ton contraption dangling from my ankle, there's not a lot of quick happening round here). It did not phase me at all to have Sam proudly featured on a Rare Disease Day banner recently...occasionally I have a little faith in my fellow human beings and their ability to consider 'disease' in this case in the correct context. And let's be honest, Sam is not the healthiest lil dude smurfing around and with things like autoimmune issues and the rest of it, illness quite often rears it's head along our journey with Rubinstein-Taybi Syndrome. Most things in life have an ambiguous connotation, sometimes you just gotta focus on what's real for you and not sweat the small stuff.  So,while I did twerk my post to read Rare Disease / Syndrome / Condition Day (Twerk? Really? Bleh...now I have images of Miley Cyrus assaulting my brain. TWEAK folks! I meant to say TWEAK!) I really enjoyed the spirit of unity and support displayed all over the social media and felt even more blessed when finding out that all seven of Sam's 'school friends' and their moms had donned jeans for genes. Too precious ♥

(Pics below as I am still figuring out this whole Android blogging app)

Yesterday was the official 'Spread the Word to end the Word' Day. People using the r-word as a means of insult in a derogatory way... that I do have a problem with. If it's a doctor referring to Sam's growth or development...sure, 'retarded' is an acceptable term. I can't say I agree with ANYONE referring to Sam's cognitive or academic abilities as retarded...yesterday, after several requests on my part, the kid correctly identified a  parallelogram out of four possible shapes... and not the boring basic shapes he's known for years, but more  challenging shapes like ovals and pentagrams. That's no mickey mouse achievement for a 4yr old. People referring to people/movies/situations/objects as retarded is nothing short of a neanderthal mentality. Really. Move on o' ye uninformed cavemen. People with intellectual/cognitive challenges are taking the world by storm...they have to work ten times harder to achieve what comes naturally to you, have to constantly prove that they are worthy of respect and acceptance...it makes them more diligent, more passionate and relentlessly determined. The only person whose intelligence requires questioning is the one whose vocabulary is so lacking that they are unable to produce a more appropriate word than the r-word. As I said,  occasionally...very occasionally...I have faith in my fellow human beings. 

So other than raising awareness and slamming ignorance, there's not much excitement going on in Smurfville. There could be what with night marathons,  crown birthdays, school camps, Iris House Easter egg hunts and hockey tours all happening within the next 3 weeks, I should be swept off my feet with anticipation. Well I'm swept off my feet alright, just for the wrong reason. Uugghh! So frustrated with this whole ankle story. But I can tell you one thing, it has given me a fresh perspective on the challenges people, and especially parents, with physical disabilities face. We most certainly take our bodies for granted.

In closing, I recently followed a thread where several moms debated whether SensoryProcessing Disorder and even a degree of Autism are both a part of RTS. While I absolutely agree that most RTS kiddies along with very many other conditions/syndromes afflicting children, are prone to sensory issues I can assure you that it is a whole different scenario to a child who has a completely separate and additional SPD or Autism diagnosis. To simplify, if you took the RTS out of some of our children would they still have those sensory issues? More than likely not. If you took the RTS out of Sam would it remove from his life  his inability to determine whether he is 1cm or 1metre from the floor, the confusing co-ordination which prevents him from being able to touch his nose when prompted, the debilitating fear with which he lives through each and every day of his life which prevents him from taking his first step, delighting in a slide at the park, enjoying his bath without cowering at the glimpse of a solitary water bubble floating behind him. Take the RTS out of Sam and we'd be doing a crazy loon dance at not having to deal with all these medical problems, but would the kid be in a different place  developmentally? Absolutely not!

Just wanted to put that out there. Reactions on some of the support groups have been a little fragile lately, feel safer here ;)

Sam's art class friends showing their support. Love.

Dunkin' Smurf

Sam has acquired a new bathtime habit...dunking his Tintin-style 'kuif'. The funny thing is that normally he doesn't like water in his face, but when it's dripping off his own fringe it's apparently less troubling. Today was the first time he managed a few smiles and giggles. This whole mom-out-of-action thing is really taking its toll on him and he's even started lashing out at Gramps, often smacking him or trying to pull his almost non-existent locks when Gramps has to take him from me for a nappy change or similar task.

This whole foot injury is one of the most frustrating things I've ever had to deal with for sure. And seeing new bruises and swelling popping up almost every day is really starting to eat away at my little fantasy that after a quick examination on Friday morning,  the orthopaed is going to tell me the foot is okay to start walking on. This is going to be the longest week ever :(

Possibly also adding to Sam's irritability is the fact that despite having polished off his last dose of antibiotic this morning, he was still sporting a low grade fever this afternoon...can only hope that it's not indicative of a more persistent throat infection :(

Nocturnal Smurf

Crocodile Samdee :)

Nocturnal Smurf was my original heading for this post after Sam pulled another all-nighter amidst several evenings of his usual sleep-challenged nights. Sam's only second ever art class was to be held at our house on Friday. It seemed like a good idea at the time but when Friday morning dawned and Sam had very few hours of sleep to brag about I started feeling a little anxious about Sam's ability to peacefully allow his friends to explore his territory. While Sam did not really participate in the art activities himself, he was unexpectedly okay with having the group in our small house and actually enjoyed quite a few delightful moments watching the others playing and putting on a show for him. Yes, there were one or two narrowly-escaped hair pulling and toy throwing incidents but at the end of the class I felt

the art class had been a successfully interacted experience for Sam, minus the actual art of course. 

Sam was fairly exhausted by evening and fell asleep quickly... and awoke just as quickly somewhere before midnight, not shutting his eyes again till 8:36am on Saturday morning for a two hour nap. 

There was bodybashing, crying, frustration, desperation... but no sleep. Oh... and there was fever... and vomit. Saturday and Sunday both flew passed in a haze of exhaustion and more of the above while trying to attend to necessary tasks, like laundry, in the 40ºc heat. Somewhere round 6pm on Sunday I remembered I'd done a load of washing and forgotten it. With the heat still stifling at that time I chose to quickly hang it out and it was in my haste that I trod incorrectly on an uneven piece of ground and popped my ankle. 

Off we rushed to the local trauma unit where after 4 hours of waiting and 6 x-rays the on call doctor determined it was just a bad sprain and after applying a bandage, sent me on my way with instruction to keep off the foot for a week. I was a little uncertain of her diagnosis but anxious to get home to my sick little man. 

With Sam being really miserable and clingy it was a little difficult to keep my leg elevated and while I didn't stand on the foot,  I most certainly had to resort to a little weight beating. 

By Tuesday morning Sam's temp was still hovering around 38ºc despite meds so I made a doc appointment for him. Chris' phone rang several times during the consultation from a somewhat familiar number but we did not want to be rude and answer it. Upon returning the call we were advised that my x-rays had gone to the resident orthopaedic surgeon who had found a fracture. 

Pretty handy info to have had 36 or so hours earlier, or what?

Next step (or rather clumsy crutch-clutched lurch) was the fitting of an aircast and the countdown to a follow up        consult on the 28th. Over and above the pain and discomfort of this bulky apparatus in the middle of summer is the rather heartbreaking issue of not being able to take care of my lil smurfy dude... especially when he is ill :(

Take a bow my anti-special friends

I have noted, often with amusement, the very many different reactions that one little word can ignite amongst those who too are navigating life with a differently-abled child/children.

*special*

An almost irrational anger expressed by some when a post is shared repeatedly on Facebook declaring that moms of kiwida's (my new term for kids with different abilities) are special. The awkwardness when someone gushes at what a special job you're doing raising your kiwida's but then the immediate pride when another kiwida mom tells you the same thing.

Before encountering life with kiwida's the word 'special' generally stood for all things good and wonderful...it was a special occasion, I'm wearing my special outfit, you have a special place in my heart...and so on. And then an unexpected diagnosis is thrown at you and suddenly special just ain't so special anymore.

One of the first things I felt when Sam was born (besides mind-numbing, stomach-churning fear) was loneliness, which I'm sure many have experienced too. Not due to lack of companionship but simply because we'd landed in Holland instead of Italy with everyone else. There are so many of us who just want to be one of the crowd, to belong, to be accepted...and 'special' almost certainly hinders that.

But then I encountered another fascinating phenomenon.

Over the passed few months I've encountered many new faces, all smiling through the often heartbreaking challenges of nurturing children with conditions like Aicardi-Goutieres Syndrome, Muscular Spinal Atrophy, Rett Syndrome, Metabolic Syndrome CDG1c, Leigh Syndrome and a few others I can't even pretend to spell, and have noticed that while parents of kiwida's generously compliment other parents of kiwida's on their courage, dogged advocacy and unfaultering love for their children, they themselves struggle to accept the same sentiments.  Perhaps that is why 'special' creates such an uncomfortable feeling within us...we don't see ourselves as better or wonderful, we don't see our children's needs as better or wonderful. Simply because we're/they're not.

I have often responded to such well-meaning gestures by saying "you'd do the same" because I truly believe it. Parents of kiwida's discover courage they never knew existed within them, are filled with a passion that sometimes frightens even themselves and strive for conquests that many take for granted...because they have to. And while few would embrace such challenges in any other way, it does not take away from those who already have.

Daily I am inspired by parents of differently-abled children who have taken these uniquely-acquired life lessons and drawn from them the courage and motivation to provide much needed support groups, advocate equal privileges, raise awareness, heck even challenge a legislation or two all while attending to the specific needs of their families. Special? Maybe not. But certainly worthy of a well-deserved bow and applause.

Cloudy with a chance of vomit

Wow! Am I glad to see the back of this passed week - heck yeah! That brilliant night's sleep Sam had on Monday night? It was not a taste of more good things to come...rather a kind of cruel antagonising of what we're missing. So needless to say there was no sleep on Tuesday night, not many wet nappies but a whole lot of wet everything else as Sam indulged us in some fantastic displays of projectile vomiting.

Wednesday...I get tired all over again thinking about it. More of the same except with the added variety of an evening trip to the ER after Sam decided to partake in a little light acrobatics off the bed. Yip, screams of hysterical panic could be heard for miles...even Sam was crying. Once Sam had received a once-over by the on-call doc and bestowed generous amounts of his poorly digested dinner throughout the ER, he at least managed a degree of decent sleep.

I was thrilled to wake up to a wet nappy on Thursday morning and even though Thursday brought with it another bump on the head when Sam backflipped off his little push-bike, his bladder seems to have returned to it's usual 2-3 hour routine. And so too have we returned to a rather challenging 3hr average of sleep at night. While I'm sure grateful the lil dude's bladder seems healed, it definitely was not the contributing factor preventing him from sleep. A little disappointing...but we press on, a little baggy-eyed and cloudy-minded...but on nevertheless.

*yawn

We're having a wee problem

And by "wee" I don't mean small because it's certainly not a small problem at all.

 

With Sam still sleeping poorly and still going way too many hours without passing any urine, we popped off to see his paed yesterday. Sam's bladder was somewhat distended and very full so Doc Paed marched us off to radiology for some vomiting (inevitable)and a scan. The scan showed about 50mls of  'sludge' in Sam's bladder and a slightly enlarged right kidney. Doc Paed's thoughts on the 'sludge' is that it might be some debris from one or more of Sam's current meds. So the plan of action for the next five days is to hold up on the Faverin (anxiety) and Motillium and start Sam on some Cardugen, which should relax the muscles in the bladder and hopefully bless us with more frequent wet nappies. An added bonus Doc Paed mentioned is that the Cardugen might help relax Sam overall and make for some much-needed sleep.

 

And that it did for sure. Sam slept a solid 11 hours last night, hardly moving at all...

But Sam's nappy stayed dry for another 14.5hrs despite the Cardugen apparently taking only 2 hours to start having an effect. Doc Paed advised that going 6 hours without passing urine is reason for worry so 14.5hrs plus plenty fluids and a dose of the relaxant is a little stressful. This morning he decided to add an antibiotic too in case there's an infection lurking somewhere that we can't pinpoint.  Being Motillium-free is also going to be rather entertaining as the Motillium prevents vomiting and helps the stomach empty a little quicker so, with Sam's tummy emptying at about the same pace as a snail doing the Comrades, we're surely up for some v-wording.

On a good note (well kinda) my body was so relieved and grateful for a decent night's sleep last night that it blessed me with a truly wonderful dream. I dreamt we were sitting at the diningroom table and all of a sudden Sam WALKED passed and I was like WOW! I so get Jessica's (Sam's RTS brother Alex's mom) post from almost five years ago when she blogged one day about sitting on the sofa and all of a sudden seeing Alex's head bob passed and how seeing him walking was quite surreal. I woke up all dream-happy and even slightly excited at merely just the thought of Sam walking someday. Truly can't wait.

But first, there's gotta be pee!

Daniel and Friends Fund

A friend and I were chatting recently about the almost instant camaraderie when parents of differently-abled children meet for the first time.  Sometimes it's almost as if there's a sixth sense present which tells you the other person has insight into your journey before you've even exchanged stories...it's the sensitive way in which they enquire, it's the "knowing" way in which they listen, it's the empathetic yet free-from-pity way in which they offer support. It can be a technician during a routine mammogram, an occupational therapist whose compassion is channelled from somewhere deeper than just her patients, a friendly fireman delighting a homeschooling group at the local fire department.

 

Nobody knows your fears more personally, shares your joy at small achievements more fervently and understands your disquiet about the future quite like someone who too has felt those very emotions. Having the support of your family and friends is vital when navigating the less-travelled path...but having the support of fellow travellers can be nothing short of a lifeline. And a passionate and very determined trio of moms has taken this sentiment just that little bit further and formed an organisation which focuses specifically on providing this very support. They, together with their children's paediatrician, are the founders of the

 

DANIEL AND FRIENDS FUND

 

Daniel, who would have celebrated his 4th birthday today, lost his battle with Leigh Syndrome on the 23rd of August 2013. Exactly a week before that Daniel's little friend, Mariele, passed away due to complications related to Aicardi-Goutieres Syndrome, which Mariele's younger sister Liza also suffers from. (I have mentioned Liza before, perhaps not by name, as she is the little sweetheart who is solely responsible for every ounce of Sam's attention flying out the nearest window when her and mom, Kate, arrive for their OT session straight after ours). Daniel and Mariele's moms, dedicated to keeping their childrens' spirits alive by using their passing as the driving force behind their passion to help other families with differently-abled children, have joined forces with the mom of Johan and Sanel, both diagnosed with Metabolic Syndrome CDG1c, to be able to offer not only financial assistance when needed, but also assistance in the way of emotional support, training and education  related to caring for the child, raising awareness by means of community and educational programs and mass media campaigns...the first of which began with the very successful (and emotional too I might add, even for those who never had the delight of personally knowing Daniel and Mariele) launch of the Daniel and Friends Fund last Thursday evening.  



 

A brochure offered at the launch, together with business cards and a complimentary chocolate, all detailing the professionalism with which the Fund is being approached.

 

HOW CAN YOU HELP?

 

The monthly costs involved when caring for a child/children with different needs can range anything from R5,000 to R35,000 so it goes without saying that monetary contributions are much needed.  But for those who are not in a position to assist in this way, the Fund gladly welcomes donations in the way of no-longer-needed equipment/accessories like prams, carseats, feeding chairs, rocking chairs, apnoea monitors, nebulisers, etc; daily care supplies like nappies, wipes, barrier creams; clothes; volunteers willing to be trained as carers, etc.

 

But right this moment, the most effective way you could help would simply be to click on the link below and assist in raising awareness by Liking the Daniel and Friends FB page and, of course, share...share...share!!!

Daniel and Friends Fund Facebook Page

  

Daniel and Friends Fund Webpage

 

 

There's the well-known saying :

 

"Some people wait for the storm to pass. Others learn to dance in the rain"

 

Well, boy, can these Mama's dance!

 

 



Accessorise! Accessorise!

Move over Louis Vitton and Prada...I have recently acquired the ultimate fashion accessory.

 

 

Behold...the DNY all-purpose carry all!

 

Perfectly designed to catch and store the most ghastly of throw-ups with a large, easy-to-aim opening and readily disposable container. The product of a spontaneous brainstorming after last Friday's art class, when Sam spewed his entire stomach's contents all over the inside of the car, at the sighting of unfamiliar territory...before I'd even managed to get him out the car. 

 

This was the before picture...I thought it best not to capture the after picture LOL!

 

 

 

Several times over the days leading up to Sam's very first art class, I let him watch a video of children painting pictures, as well as on the Friday morning hoping to prepare him in a way for the morning's planned activities. I knew Sam would not hold a paintbrush, so opted instead for finger paints especially as he seems quite keen lately to try different textures on his hand, even textures which previously freaked him out, like bubble bath.  But of course before getting down to any painting there was the matter of transitioning him from familiar hence safe (car) to unfamiliar hence threat (never before visited home). Transitioning is definitely an issue with Sam at the moment...it's that vulnerable space between the safe, solid chair to the safe, solid floor.

 

My first reaction was to surrender and head our vomit-covered smurf home. But after encouragement from the wonderfully supportive other moms, decided to stay and although Sam refused any kind of painting and moaned occasionally, we spent a good hour just enjoying the other children proudly tackling their activities. 

 

Already caught up in a particularly challenging wave of anxiety, the severe lack of sleep happening in Smurfville is most certainly not helping at all. From Friday evening till Tuesday, Sam's sleep deteriorated from being awake roughly between 12am and 4am to less than two hours sleep on Monday evening. Sam woke just after 10pm and that was it, he bashed himself senseless and to the point of acquiring a few bruises, until just before 6am at which point it was easier to just admit defeat and get up. I was convinced there had to be something bothering him so went off to the doc but Sam received a clean bill of health. Sam's been having some urinating issues again and over the past few days going anything between 12 to 16 hours without a wet nappy has become the norm, despite drinking at least 1litre of fluid every day so I was looking forward to mentioning this at our neuro appointment on Wednesday, but quite distressingly the appointment was cancelled due to some sort of miscommunication regarding Sam's neurosurgeon's availability. We did do a urine test on Tuesday to rule out a UTI, which it did.

 

Another issue I wanted to raise at Wednesday's appointment was the possibility of Myoclonic Seizures. Quite some time ago I complained that Samuel's body twitches and jerks all through the night...his legs, his arms, his hands almost constantly and even his head. So much so that it lifts off the pillow sometimes.  Somewhere along the line I recall the term Myoclonic Seizures being mentioned on one of the SPD support sites. I paid little attention, reassuring myself that even though Sam's only had 5 seizures in his lifetime I would most certainly recognise it if it happened again. Then over Christmas Sam had that lovely little virus visiting his tummy and I awoke one night to him having a very short, but definite, convulsion. The first two convulsions he ever had were febrile convulsions caused by the onset of a nasty tummy bug, almost three years ago to that day. I kept a close eye on Sam for the next few days and decided to go read up on Myoclonic Seizures after all, just in case, only to discover that they are in fact not "seizures" as such, as I  had presumed, but rather a series of spontaneous jerking, etc. An extra bonus was that there are a few video's on Youtube actually showing what it looks like and it pretty much looks exactly like what Sam's little body is doing through the night, which would sort of explain why peaceful sleep escapes him. 

 

So, again, really disappointed that Wednesday's appointment didn't take place :(

 

Finally, Wednesday evening saw us enjoying at least a little sleep. Not a full night's, but there was more sleep than wakefulness...which becomes quite good enough. Thursday morning was Sam's first group outing -  to the Fire Department! Really exciting, particularly for me, as Sam loves doing the "fire engine" sign. Thankfully we avoided vomit for at least the first half hour, although Sam preferred observing the fire engine and the other children from a distance. When the firemen turned the water on, that distance entailed Sam and I having to leave the actual fire station and watching from outside the front of the fire station, through the great big doors. There might have been vomit, but it was just a little...not even enough for me to have to reach for my DNY but easily cleaned up with a wet wipe. That little bit of vomit though was quite a blessing as when rushing to the car to retrieve the wet wipe, I discovered I had left my car door open the entire time. GASP! These kind of little..um...oversights are becoming a bit too frequent. There has been the occasional bottle or phone left on the roof of the car and en route to the Fire Station on Friday I suddenly found myself at the local high school, not too far off my intended destination (barely a kilometre or five) but still just a tad worrying. Surviving on 1-2 hours sleep a night, I would have imagined far more perilous consequences so we're still good for now. And boy is that a good thing, because last night we did another whopping amount of bodybashing from, again, round 10pm till just before 5am. Thankfully Sam fell asleep then for just over three hours, giving us just enough time to make it to physio which lasted all of 20 minutes as Heidi was unable to work with the fearful and fight-or-flighting little dude :(

 



Where Sam is at his most happiest lately...at home, close to the floor, on a soft surface...with an adorable little boy for company

Sam and his "bike" providing us huge amounts of amusement because try what you might, he refuses to sit straight on the seat. As soon as you correct his position, he shifts that little bottom to the left and refuses to ride any other way.

Change

Sam turns five this year. Yikes!
Meghan turns thirteen. Double Yikes!
Mom turns.....mmm, let's just not go there!  #fortyphobia

Since pretty much the beginning of Sam's sensory/anxiety issues I have found myself wanting to homeschool Sam. I take great delight in sharing that before the age of three Sam knew all his numbers 1-20, many shapes, letters a-f and more recently can recognise almost 30 different WORDS from his list of signs.  And these words have no pictures or icons, it is simply a list of 200 words from which he can select several simply by scrolling down the list. And it's not the easy words...it's words like caterpillar, swing, sleep, daddy, mommy, grampa! I love how much Sam absorbed whatever I was "teaching" him and how he thrives on a one-on-one setup.

Towards the end of last year I started having second thoughts. Watching Meg enjoy the excitement of the various yearend activities like concerts and grade results, etc. made me a little bit emotional about Sam not ever experiencing those same things.  Suddenly all thoughts of homeschooling had me envisioning a solitary smurf, humped over his i-Pad, robbed of social interaction and, seemingly, life. Accompanied by an equally solitary, hermit-like,  humped-over mother (hers age-related LOL). I thought about the extra, included therapies Sam would benefit from by attending a school for differently-abled children as well as the possibility of me returning to work to try and keep our heads above water financially. 

Also, and perhaps having had the most impact, I recalled someone making a comment on some or other medium implying that homeschooling was effectively saying that you do not believe your child has the potential to thrive.

Yip. Definitely what had me ever-so-slightly mortified.  Simply because I know Sam truly does have potential, huge unimaginable hoards of potential.  And it would be devastating to have him or anyone else believe otherwise. 

And then the holidays happened. Along with a level of anxiety and distress we have never seen before...and we've seen plenty of both. Apart from the change in routine that goes with no school or work (which I've mentioned before) there were other minor things just as baffling. Samuel stopped pulling himself up on the tv unit, which he used to do all the time especially when watching his favourite dvd's. He became impossible to transition from, say, the couch to the floor. He would just turn around and cling to whatever he could grab in absolute fear. Having him so fearful in his own home is saddening.

Remember the story about the time I hung curtains in our bedroom? Try this one on...

As our lounge is a little quaint, putting the Christmas tree up required the moving of some furniture. And by "some" I mean shifting one sofa a total of about 1.5 metres at a 90deg angle. When Grampa returned from a two week visit with his sister and noticed the change in Sam, he asked if it couldn't perhaps be the shifting of the sofa that was unsettling Sam so much. I said "Nah!"

Yesterday morning I moved the lounge back to it's original arrangement. Instant improvement in Sam's behaviour. The fear is not completely gone, but it is better.

The lil smurfy dude just doesn't do well with change. He doesn't do well with unfamiliar. I tried to introduce Sam into the Sunday School class last weekend.  With the classes not having begun yet, the class was very casual with the other kiddies just playing ball or building blocks...nothing particularly exciting. Of course I planned to stay with Sam all the time. Instantly he started gagging. I tried to distract him, which worked for a little while. More gagging. Twice I left the room to try calm him. But eventually it got too much for him and he started vomiting again.

So here's the thing...Sam in a mainstream school will.not.work. It is not a cop out. It is not a surrendering of his potential. It is not an over-emotional grumbling. It is what it is. REALITY. Putting Sam in a mainstream school now would not be for Sam's benefit. It would be for ours...for the sake of our pockets and for the sake of the "normal" expectations instilled in us for our children, for the sake of fitting in, for the sake of a hundred other things except for the sake of our uniquely designed Sam.

Now, the only doubts I have about homeschooling are really about myself. Having no teaching experience, will I be able to adequately educate Sam? I am blessed to have a good friend who is currently homeschooling both her sons and has introduced me to a homeschooling group. Her reassurances that homeschooling by no means deprives a child of social interaction have been validated almost immediately by an arranged group art class tomorrow morning at 10:30 which Sam and I will be attending (hopefully minus v-wording) and an outing for next Thursday to the Fire Department which couldn't come at a better time as Sam has suddenly developed a keen interest in fire engines.  I have every intention of persevering with the Sunday school class as well and can only pray that Sam eventually starts to feel comfortable there. Taking that Meghan took a total of two years and nine months before she enjoyed her first tear-free day in primary school, I am hoping that by the time Sam is 7 we might have a successfully attended Sunday school class!!!

I am excited about our homeschooling journey. I am excited about finding new and creative ways to teach Sam, knowing that I am playing an active role in helping him be all that he can be. I know in my heart it's the right decision for Sam :) What was that I mumbled recently about how changing the path you take doesn't necessarily mean changing the goal xxx

Progress is a nice word, but change is its motivator.
And change has it's enemies.
(Robert Kennedy)

The Lighter side of Sensory Processing Disorder

Sam's newly acquired aversion to the sound of running water and, more importantly, the sound of running water hitting any kind of surface has become quite entertaining.  Last Sunday Sam had another vomit session at Church (Yes, really #sigh). The first thing we did once he stopped puking was walk him over to the outside tap to try and wash off his hands, hoping to make transporting Pukey Smurf a little less challenging. Well the poor kid jumped a metre high when the water hit the paving outside, almost starting the puking all over again.

 

This interesting new twist has kind of put a damper on my wanting to try Sam with some potty training this Summer.  I thought the least "pressured" step we could take would be to let Sam have a wee in the garden.  Well two major problems with that one a) he won't stand on the grass and b) that would entail him having to tolerate the sound of his wee hitting the grass.  It just ain't gonna happen folks. Quite amusing is the fact that he has taken a liking to having a whizz on the bathmat at night while I am undressing him and the sound of the little pool forming on the mat does not seem to bother him just one bit.  So the only thing I could think of was a fur-lined potty. JUST KIDDING! Well kinda, if I thought it would work I'd certainly try it.  Just for laughs though I googled fur-lined potties and actually found one! Unfortunately the fur would have to be at the bottom as that plastic bottom would definitely make for some serious startling. Nevermind the laundering challenges that would pose, although having to wash the bathmat on a daily basis is not much fun either.  

 

Luckily most of the moms on the Sensory Processing Disorder site have shared that trying to get SPD kiddo's onto a potty is almost impossible so we are being spared the epic fail that would come from fur-lined potties.

 

More seriously though, this SPD thing has us beat at the moment.  First there was RTS and having to adapt to a set of specific challenges.  Then 19mnths later, having just started feeling like we were sort of keeping head above water in the RTS ocean, along came SPD.  There, but pretty much in the background with the exception of some conquerable little quirks like keeping Sam away from sunlight (which caused him to scream as if in pain), making sure his milk was always the exact same temperature, etc etc while we still grappled with the more serious RTS issues like a tethered spinal cord, undescended testes, etc.  Then after that first testicle repair all of a sudden SPD was right up front giving RTS a remarkable run as most puzzling condition.  And now? Now Sam's sensory issues are by far more perplexing than his RTS issues. Why would the SPD issues be troubling us more than the RTS issues? Because, to a certain extent, we are at least prepared even if on a shortterm basis, for what to expect...what to look out for with RTS. But oh my gosh, no such thing with the SPD.  Sam's "symptoms/triggers" are changing almost on a daily basis. It's like having a different "condition" to master every morning, a different little person to nurture and securely guide through each day...every morning. It's pretty darn exhausting I tell you.

 

All of a sudden we are doing loads of gagging and then inevitably, throwing up again. Last Sunday we attempted to sit with Sam in the baby room during the Church service as it was empty.  Sam has not been in there for a while, maybe two months at the most, but there was a stage where that's where we sat with him every Sunday. Everything was going okay until I decided to move from the chair onto the floor with him, again what we would usually do most Sundays. And for some reason transitioning onto the floor has now become a major gagging trigger, even here at home since then. 

The v-wording thing is really hard for sure but Church being a gag/defensiveness trigger? Without a doubt one aspect I could least come to terms with. 

 

And as baffling as Sam revisiting his extreme fear of being moved around (we did this almost exactly two years ago when I struggled to get him into and out of his carseat, etc) is this....

 



 

For the first time in twenty-eight months he is quite comfortable with moving from his knee-walking position into sitting on the floor again..all on his own.  Not only that but about a week ago Sam started standing up, completely unsupported, on the bed.  I've tried desperately to take a pic but I am so scared of losing sight of him and having him somersault off the bed that I haven't quite captured a clear shot yet.  He can only manage about 10-15 seconds but each and every day his balance improves and he can more easily right himself when it looks like he might topple over. 

 

So...to sum it up, having mom or dad lift him from the couch to the floor is an absolute gag-worthy No No! As is running water and the bathrooms and baby room at Church.  But suddenly sitting all alone is like so blasé as is standing up for the first time EVER!  Baffled? Yip, me too!

 

Sometimes I wish with all my heart I could simply ask Sam what troubles him and what I can do to make it better.

 

But I can't.

 

I don't speak Smurf :(

 



One of Sam's Christmas pressies :

 

I don't know how possible it is, but I do wonder if this really inexpensive gift has not contributed to Sam becoming so much more confident with the sitting and standing. Sam does ride the little pushbike quite well, way better than I expected, so perhaps it's possible? Regardless, it is beyond joyful for this Mom to see her little boy cruising around on his bike...just so normal.



 

 

We've made it through a very low-key Christmas and even more low-key New Ýear's Celebration, filled mostly with time at home watching movies, splashing around in the pool. In fact, I was so concerned that the rather hectic change in Sam's routine was causing some of the newer gag-triggers that Sam and I did not leave the house for almost seven days, apart from quick trips down to the Spar and the like.  Well that and the fear of having to add a few more destinations to Sam's list of places he has vomited!!!

 

WISHING YOU ALL A TRULY BLESSED 2014.

MAY IT BE AWESOME XXX

Sleep Wars & V-wording

 

Different for sure is our little smurfy dude.  Still totally thrown by having his little world rudely interrupted by all things Christmas. Up until Friday evening we were surviving on very little sleep, most of the night spent with distressing (mostly for me) bodybashing and a seemingly aggressive itch (without any visible rash to justify it) which bothered Sam for hours, resulting in him scratching his skin open in some places.  By Friday, desperate for sleep, we went off to the pharmacy hoping to fill a longstanding script we have for Aterax, which we first used for Sam when his sleeping problems began but quickly found that, while effective the first three or four nights (as with many meds Sam has taken) the fifth night usually ends in a major fail when the med has the adverse effect and Aterax was for sure one of the most true to this pattern. The pharmacist advised that Aterax has been unavailable for some time but, with it being for shortterm use, suggested some Allergex syrup (Chlorpheniramine). Well Friday night Sam managed eight wonderful hours of sleep, Saturday night nine hours and last night an awesome eleven hours and 50-odd minutes!!! Despite my better judgement, we've gone ahead and tried one more night but regardless, just having three nights of decent sleep has us feeling almost human again. 

 

Sam's current anxiety/sensory mix is still Faverin in the morning and Clonidine in the evening.  Even though the Clonidine doesn't really help hugely with the sleeping issues, the combination of the two definitely makes for a calmer Sam during the day. That is, when we've not upped his social exposure and aren't having a much-needed braai (BBQ) with friends one night, off Christmas lightseeing the next evening and traipsing around the night market the very next. Perhaps three consecutive nights was a bit much for Recluse Smurf and left him pretty much like so today...

 

And with heightened sensory issues comes heightened v-wording incidents. And we're saying "v-wording"because defensive gagging followed by various degrees of v-wording is once again a regular occurence during our day...sometimes caused by my rather slow transition back into being alert for triggers. Yesterday morning I took Sam into the Ladies restroom at Church and within a second realised that I usually only take him into the Disabled bathroom with which he is now familiar. Any unfamiliar environment remotely "clinical" has always been puke-worthy, even before the holidays, so only twenty minutes into the service we were leaving with a stripped little smurf and an armful of eau de puke clothes. #sigh 

 

Having our last PT session for the year last Friday, Heidi and I discussed Sam's rather dysfunctional balance and possible ways to help him adopt at least a vague sense of being able to keep his little body upright. For instance, Sam cannot keep his body upright when going down a slide...he instantly falls backwards. Even in the swimming pool, he just sort of topples over. Sam's been doing really well on working with the PT ball again which is pretty awesome and I chatted to Heidi about possibly trying him on one of those little push motorbikes, particularly because he seems quite fascinated with motorbikes and fire engines at the moment.  Fire engines are definitely his favourite, always accompanied by the most adorable signing of fire engine but while I would love to buy him a fire engine of his very own that he can ride on/in, we've gone with the toy motorbike. I think it'll be one of the first gifts he'll be really excited about...which of course makes mom excited too :)



Words and Steps

Having just finished supper one evening last week, chinwagging about this and that, Brampies wondered out loud what Sam would be like if he did not have RTS or SPD.

 

I said that I think he would be very intelligent, quite cheeky, have an excellent sense of humour, be rather mischievous, extremely demanding and strong-willed but loving and affectionate too, you know, kinda like he is now....just with words and steps :)

 

At the moment though, words and steps are not flowing in abundance. It's been more than 6 weeks since that solitary word and not a single one more. Sam had quite a major fall with his walker, which I thought would put that one to rest for a while too but, both strangely and thankfully enough, he was quite happy to use the walker again the very next day. Sam was doing quite well with walking while holding one of our hands and then seemed to become quite fearful again. We still try at least once a day to give it a go...sometimes it works, sometimes it doesn't. This evening I was in the bathroom, getting Sam's bath ready and out of the corner of my eye I saw a little person...just a single, little person...walking round the corner. Honestly, my heart simply stopped...I couldn't move, couldn't blink...for a millisecond, until I realised that the single, little person's hand was actually attached to his, only then visible, Dad's hand. Disappointed much.

 

We are two weeks into our six week school holidays here, with the 2013 school year having ended on the 4th December.  There have been plenty of award ceremonies, concerts, recitals and all the other year-end happenings...most of which Sam did not tolerate all that well.  He lasted all of about two minutes into Meg's ballet recital before Dad had to head home with him, screaming and pulling hair like...uuhhmm, a kid with SPD actuallly. At least I got to stay till the end #Yay 



 

A recent addition to Sam's list of "hostile"sounds is water. The sound of the waves at the beach now freak him out, the sound of a sprinkler going, the water hitting the ground when Brampies or Dad waters the lawn. No less alarming, was the sound of the garden house filling our little pool for Summer.  So much so that Sam had a mini-anxiety attack every time we needed to walk past the pool (now full) over the next few days. Until we managed to coax him in of course. Then every time he saw the pool he asked, with his most charming sign language, to swim. Even on the way to OT one not-so-sunny morning at 9am.  And of course the moment he spots Meghan taking a dip, he requests so desperately to join her that there often isn't even time to grab his swimming trunks. Meg, being the awesome big sister that she is, has been very accommodating so far...

 

 

 And then there's this...

 

The little smurfy dude has taken to watching his Mr Tumble dvd's like this. Any time spent off his knees is welcomed, nevermind how darn cute he looks. He hasn't quite tried to "sail" along the furniture yet, but just having him feel comfortable enough to stand up again is quite huge. Baby steps, right? 

Change the plan but never the goal



Cannot believe it's the last day of November. And I've only blogged once this whole month, so had to attempt at least one more post, albeit short.  This time of the year is notoriusly "crazy" as the school year comes to an end and brings with it all kinds of activities like concerts and prizegivings, etc amongst having to study and write exams, Meghan that is.  We've only three school days left for 2013 and I can safely say that the entire household, Sam included, is looking forward to a little "chill" time.  

 

Sam's behaviour is all over the place...we have surprisingly harmonius days, like Friday, when the little dude was the most charming smurf around.  All smiles and co-operation during his physio session and sweet and friendly during a shopping trip immediately after physio, which is normally taboo with a capital YIKES! Followed by a day of up-and-downing in the car getting Meg to her different commitments.  Today he has been completely unruly, throwing anything and everything he can get his hands on, causing mutiny during Meg's ballet prizegiving and just generally being grouchy.  I am hoping that once our routine settles down again we'll see a little balance restored.  Even when life is a little more peaceful Sam tends to act up on weekends when, inevitably, his daily routine is disrupted. 

 

We have had quite significant improvement with Sam's walking.  I ditched the towelling wedgey I'd fashioned on Sam's walker as, although it was providing the security he needed when using the walker, it definitely made his walking a little awkward.  So, with Plan A proving unsuccessful, I fashioned Plan B...an old, stretchy belt attached to the walker which provides just enough security around Sam's trunk without hindering his movement. And, even more exciting, is that Sam has started pulling himself up on things again.

 

 

Success! Now Sam's more than happy to spend more time in his walker  #phew   

Heck yeah!

 

 

With Sam's testing all kinds of boundaries over the last few weeks I decided it was time to bring in some serious reinforcement when disciplining him and introduced a naughty chair. His first few sits were really quite traumatic for Sam, with his having sensory challenges with transitioning to and from a sitting position, but by the second day his being placed on the naughty chair was an opportunity for him to discover just how quickly he could "cute" himself out of punishment.   

 

 

On Thursday Sam had his very first haircut at an actual hairdresser.  The hair salon I had made the appointment with is super cute, decorated in true kiddies style with individual tv's and dvd players at each cutting station.  As soon as we walked in though Sam started gagging purely from having to encounter a completely unfamiliar environment. Of course getting him to sit on the chair was not an option but the stylist cutting his hair was refreshingly patient with him and pulled up a seat we could both sit on, which is where she eventually succeeded in taking a few worthwhile snips. 

 

The result (try as I might, I could not get this pic to rotate )... 

 

 

 

There's been not a single other "Mamma" uttered at all :(  But we persevere with getting Sam to repeat our very many requests to do so....or any other words for that matter.  But oh my gosh, the kid's signing vocabulary grows by the day as he astounds us often with signs he has learnt himself from watching Mr Tumble or his iPad.  His developed a bit of a defensiveness to water again, which is quite disappointing as Sam's evening bathtime has always been one of our favourite daily activities. Now, within minutes, he's throwing his bath toys on the floor and splashing around in frustration like a looney. I'm hoping this too will settle down soon, as I would often hang over the side of the tub, my face bare inches away from Sam's, and prompt some of our most intense speech therapy sessions.

 

So, with Christmas being just 25 days away, I guess it's time Smurfville considers putting up some Christmas decorations and an actual tree. I have to admit I am ever so slightly apprehensive about the entertainment value said tree and decorations are going to provide for Sam...watch this space!

 

Remember remember the 5th of November,

A day which brought joy equal to no other!

Sam has a book. Scrap that. Sam and I have a book, well several of them by now. He has this really interesting need for me to draw things relevant to whatever we might be doing/watching.  For instance, if we're watching Mr Tumble I will have to draw the spotty bag, Mr Tumble's house and occasionally even Mr Tumble himself.  If we're counting, I'll have to draw numbers. If we're sitting at the kitchen counter I'll have to draw the things he can see...the chairs, kettle, etc.  To be fair, most of the drawings are fairly hideous due to the rather challenging pace at which they need to be drawn, but certainly do reflect Sam's obviously vivid imagination as often I see absolutely no resemblance to the object of focus in my drawing, yet Sam will gesture excitedly in confirmation. 

Recently Sam has taken a liking to the biggest, most amateurish (and, needless to say, most embarrasing) of these books accompanying us out in public and I dare not leave home without it.  Driving while he pages through the book for the millionth time can be quite challenging as he expects me to acknowledge each page when he taps it enthusiastically.  On Tuesday on the way to fetch Meg from school was such a moment and while I try to (sometimes) fake a quick glance and guess what he might be looking at, in an attempt not to pancakerise the newly hatched goslings wandering around the local pond, I failed to even fake-glance.  After hearing him tap the page exaggeratedly, a small smurfy voice suddenly beckoned. "Mamma"

Any overshow of excitement with Sam usually ends in him crying so it took every ounce of self-control I could muster (and trust me, I am far from abundant in self-control with these things) to calmly stop the car, turn around and say "Clever Sam", acknowledge the drawing of Tinky Winky's bag he'd been trying to show me and then continue driving on to the school focusing through tear-filled eyes.  Once we got to Meg's school I straight away tried to get Sam to repeat it, but all he could manage was his usual "Vavava", with which he seemed just as pleased...
 

  

We've yet to hear another "Mamma" but believe me when I share that I attempt, several hundred times each day, to help Sam's brain find the path back to that wonderful place.

 

Sometimes the depth of Sam's sensory dysfunction completely blows my mind.  It took almost a whole year before Sam mustered up the courage to crawl down the really very short passage in this house, into our bedroom where he would sit in front of the mirror playing his drums or doing silent renditions of Heads, Shoulders, Knees and Toes (given away only by his actions), but suddenly about three weeks ago he became too fearful of entering our room again. The other day I decided to remove the curtains we'd hung over the blinds as they seemed to make the room too dark.  Within minutes Sam crawled into the room to admire himself in the mirror.  I did a quick calculation and realised he'd stopped coming into the room when we'd hung the curtains. No wonder moving house knocked the kid sideways...and a little to the rear too :)

 

Ah, sleeping wars...an ongoing battle indeed.  There was no substantial negative on nights four and five of the Clonodine, just that it doesn't work every night. Wednesday was a good night, Sam fell asleep within 20 minutes and only started bodybashing round 5am. Last night took the all too familiar two hours of bodybashing and a violent nosebleed before he eventually fell asleep, only to start thrashing again round 2am.  Makes me wonder if the Clonodine is contributing at all. Sam's system seems to have the most warped habit of doing well on a new med for the first four/five days and then somehow Smurfanity prevails and blows the new med out the water...or blood. So we've done Epsom Salt baths, Rescue Remedy, Valerian Root drops, Melatonin, Neurontin and now Clonidine. Honestly, could there be anything else to try? Perhaps I need to try all of these things together? On me!! Heck, there's a thought...with any luck I wouldn't even be aware of any smurfy bashing going on.  Hehe! Just kidding.

 

Rolled himself to sleep in a pillow pancake ;)

 

We're still trying to limit Sam's kneewalking but it becomes more and more difficult with each day as he grows increasingly frustrated, not only at having his mobility and independence curbed but also because most of his self-stimming is done on his knees. After Tuesday's little moment, I wondered to myself which of the two would be the most beneficial to Sam, if we could somehow guarantee that he would at least master one of the two, walking or speech...I think we'd definitely opt for speech, but still remain hopeful for both xxx