Riddle me this....

Riddle me this
Riddle me that.
Some days are peaked,
Some days are flat.

Riddle me here
Riddle me there,
Senses unclear
Best beware!

This little dude's senses. A riddle, mystery and puzzle all on their own. Exhausting.

Over the past few weeks we're very very much back to throwing up all over the show again, not in the least bit reserved for unfamiliar places but seemingly more like at any place that's not home. We were visiting a friend recently who has an old-fashioned till in her school room. Sam was already anxious just about the outing in general. Meg was messing around by the till and pressed the little button to print a till slip but there being no paper in it, it simply made a funny sound. You can probably imagine what kind of sound - not particularly sensory disturbing, well not for us anyway but definitely distressing enough for Sam to throw up.

Again we're back to a fearful, plank-like extension when I try and get Sam to walk holding my one hand or using his walker yet a few weeks ago he walked all the way from the car into the physio rooms holding just my one hand??? And here's the doozey...completely fed up with walking around with soaking wet, long hair in the middle of winter thanks to not being able to use a vomit-triggering hairdryer I decided to give my hair the chop about 2 weeks ago. Still getting used to how quickly my hair now dries, after my shower this morning I hurriedly went about getting Sam ready for his physio session and happened to catch my reflection out of the corner of my eye as I rushed about. I looked like I had run headfirst into a Van de Graaff generator!

↑ If it wasn't for the hilarious notion of being able to sit down to have a cup of (warm) tea (Oh yes please) this would have been a pretty accurate picture. 

So there was little else to do but sit Sam down in front of me (for more effective vomit-catching efficiency) and switch the hairdryer on. I first only tried about 10 seconds then stopped, expecting to see that 'I'm about to share some projectile vomiting" face. Nothing. Tried another 10 second round, then longer, and longer. Nothing! I had just started my internal whoop-whoop celebratory dance at having (finally) conquered something sensory related when it hit me. I've chopped off my hair for nothing!  

Bum! 

Luckily, Sam's sensory challenges being the chaotic labyrinth of unpredictability that they are, I will quite likely pop the hairdryer on tomorrow morning only to have him shower us all in some or other partially digested substance. Oh the anticipation! 

So other than those fabulously entertaining sensory issues, there's been nothing particularly interesting to report. We've signed Sam up for the home programme at the Chere Botha School just to have a little guidance as to what next I should be teaching him. Having mastered numbers, shapes, letters and colours some time ago I am not 100% certain where to move onto next. While Sam's physical abilities are obviously compromised, the home programme co-oordinator was very obviously impressed with Sam's intellectual strengths, especially when I showed her how I 'test' Sam by drawing several balloons in black and then write the names of the colours inside (also in black so as not to give Sam any hints) and then set all the colour crayons out next to Sam. He will, without hesitating, correctly read the name of the colour needed and select it from the lot and colour the balloon in. Fair enough his colouring skills need a little attention, but it was a very proud mommy moment for me made even sweeter knowing that it's a skill I taught him myself ♡♡♡

If I had to ask you...

...right now, on the spot...without a moment to compile a 'correct' answer...what are the five essential things all parents should teach their kids, what would you say?

To be honest? Respectful? Considerate? To love their neighbour? Humility? Generosity?...and a few other wonderful values I'm sure. Why then is there still such a struggle for respect and acceptance amongst differently-abled children and their parents? If you know the answer, please do enlighten...seriously.

No child is born with preconceived prejudices, we instil it within them through our own behaviour and the environment in which we raise our children. Let me put this to you...say you're spending the afternoon with your kiddo at the park. You approach the playground and there are two kids (roughly the same age) already playing but on apposite sides of the play area...one 'normal', the other with noticeable differences. Your kiddo is just so keen for a playmate he/she is open to either child. Be brutally honest now and ask yourself - towards which one of those children would you guide your child? And why?

No parent/s of a child/children with different or compromised abilities wants sympathy or pity. Well hopefully not...otherwise they might require a swift foot to the patoottie. In fact, they want little of anything for themselves...but for their kids they desire the world...you know...much like you do for your 'normal' kids. A world in which their children are accepted as valuable members of society, treated with respect and consideration and allowed to share in that wonderful phenomenon we call belonging.

You know why it's so heartbreaking to hear of regular occurences within our worldwide special needs community where children have been victimised, discriminated against and generally treated badly? Because we watch them struggle through challenges which are ten times, twenty times...heck, sometimes a hundred times more difficult to confront than typical kids. And then we have to watch them struggle through things which should not require any special effort at all.

Being accepted, respected and treated as a human being should be a given. It should *not* be a privilege bestowed only upon those who communicate like us, move like us, play like us and generally experience life as we do. Yet a privilege it appears to be.

Below is an excerpt from an article on everydayfamily.com. I can't say I'm loving the use of the word "tolerate". It seems better suited for other situations, eg. I'll tolerate a little chocolate mousse for pudding if I absolutely have to! Okay no, that's not a great example. How about - I'll tolerate a little One Direction in the car if I have to...for like two minutes max at a time...every other day...with the volume on 1.

Regardless of my word preferences the message, however, being communicated through the article is really quite relevant and hopefully extremely thought-provoking.

xxx

"How are you different? How is your child different? Learning to recognize common ground can be uniting, but learning to recognize and accept differences can be just as endearing. Tolerance is not just a buzzword exploited by the media in today’s society, but is a core social value of America. America has been labeled “the great melting pot,” because of its tendency to bring people of all races, religions, and ideals into one place. It is a place of diversity, and therefore a place for tolerance.

Marie Curie said, “Nothing in life is to be feared, it is only to be understood. Now is the time to understand more, so that we may fear less.”

Tolerance is the key to increasing understanding and decreasing fear in our next generation, our children. Tolerance is acceptance, openness, and respect for differences.

But how do parents promote this healthy appreciation and respect for these differences that make us so great? Children, at very young ages, are often exceptionally aware and honest about differences they observe between themselves and others, but rarely attach judgments to those candid observations.

We adults are the ones that do that!

You may have heard a parent in the grocery store shushing their three-year-old who says, “Mommy, that man is very big!” or “Daddy, that girl has pink hair!” These observations are often expressed in form of a question like, “Why does that man have such dark skin?” “Why does that lady wear that long robe?” “Why is that boy in a wheel chair?” These are perfect opportunities to teach the core social value of tolerance. What we do and say in these crucial moments can help to mend wounds and bridge chasms between different people that have been incurable in the past.

Being willing to put off the awkwardness and to talk openly and honestly with our children about their questions is just the tip of the iceberg of how we can teach them tolerance and acceptance :

6 WAYS PARENTS CAN FOSTER TOLERANCE:

Teach them love first. Be an example of loving others despite and because of their differences. Seek to help others, even if they are different than you.

Know your own values and biases.No one is without biases or values of their own. It is important to evaluate our own personal beliefs, values, and differences we struggle to tolerate. Seek to understand those things more completely.

Expose children to differences. Teach them they don’t have to agree to respect others.The best way to increase understanding is to jump in. Libraries and bookstores can take a parent and child all over the world and back to their home in an afternoon. It’s important to allow our children to explore the world and all its varieties of people, cultures, and views. This can allow a child to see your appreciation and respect for others while still allowing you to express your own views, values, and culture. It is important to note that it is not necessary to agree with or adopt all the differences we come to understand, but that we can always respect others for holding those values.

Challenge stereotypes.We do not live in a perfectly tolerant world, and there are many stereotypes and prejudices that are held and perpetuated in media, as well as in our interactions with others. It is important not to participate in jokes or other practices that foster stereotypes and degrade others. If we encounter such intolerance, parents can assertively tell their children, “That’s not true. Why don’t we learn a little more about that to better understand what is true.”

Challenge yourself. It’s easy to see things through our own personal lens. When others challenge our views or culture, it is easy to become defensive, which shuts us off to learning. It’s important to challenge personal defensiveness, and seek to see others’ point of view. Ask questions and listen before responding. Try to see things from the other person’s point of view. When children see this, they adopt this quality themselves.

Foster your child’s self-esteem.When children feel good about themselves, they don’t feel threatened by the differences of others. Children who are secure about themselves are more comfortable exploring and debating opposing views."

Let's assume...

...that the Lil Smurfy Dude has spent approximately 1800 days on this Earth and that, on average, he threw up every fourth day. That's a good average because sure there have been stretches when he would go weeks without vomiting but there have also been stretches when he would vomit two...three...sometimes four or more times every day, so it's certainly a good average. That would put us at about 450 throws up over 5 years and allocating a generous 150 throw ups to alternate landing spots, it would be fair to declare that I have been drenched in a healthy dose of eau de puke at least 300 times over the last 5 years. Three.Hundred.Times!!! Now if you are sitting (on a Saturday night of all nights) considering calculations of this nature, you know you have been puked on one (or 299) too many times.

So 300 would have to be some kind of record right? Definitely worthy of a mention in the Guinness Book of World Records? A quick chat with my pal Google advises otherwise. There was a young gent considering an attempt at being
The best at throwing up but with his regurgitation being voluntary I hardly think it's a fair comparison. An interesting article on
How to vomit without making a mess did come up...I'm going to share it with Sam...will let you know how it works out.

Now who would have expected to learn such fascinating facts on such a boring mommy blog?

Another fascinating fact...the only thing I hate more than Sam vomiting is Sam vomiting ON ME! And last Sunday's incident has so far been the most spectacular. Sam's most recent sensory overload is caused by too many people standing up suddenly around him. It happened the previous Sunday at the end of the service when I took a little longer to perch his 18kg self on my hip. Luckily quickly running out stopped the gagging just in time. Last Sunday, however, Chris and one or two other gents stood up to collect the tithes instantly causing Sam to gag. It being the beginning of the service I thought I would give it an opportunity to pass before rushing out. Not the wisest decision. After the 3rd gag I knew we were in trouble and got up to leave but it was too late...a moment later partially digested Pediasure and Futurelife exploded into my face and hair. Luckily the ground was mostly spared as the excess of the explosion was beautifully captured in the loose folds of the polo neck I was wearing.

Tomorrow we shall go accessorised with at least one marg tub and with any luck will not spend the entire service in the car.

Five things a special needs mom won't tell you

I saw this link flying by my FB newsfeed a coupla days ago Five Things A Special Needs Mom Won't Tell You and thought Oh no! Not another thousand page handbook on how to 'handle' the parent of a child with different abilities...you know, like don't blink when engaging in conversation because it could be misconstrued as blinding pity for the mother and/or child...don't lick your lips when talking as it's a derogatory action implying you think children with different abilities are lesser human beings...and all those other not-so-helpful articles which prevent, through creating a distorted idea that engaging in any interaction with the parent/s of a kiddo with DA's is bound to be super high maintenance, the one common desire we all ache for...to just be treated like N.O.R.M.A.L.

Bleh. Normal. But there I said it.

I'm still sort of contemplating the term 'special needs mom'. A couple of years ago I never would've considered myself one of the more politically correct types on this journey...hearing people use the r-word sure irked me, but not enough that I would grab the nearest piece of cardboard and go start a protest. Now?  I really could kinda see myself doing just that. In all fairness, I have used the term special needs mom/parent myself but mostly because it's probably the most 'recognised' term socially. I've experienced a few 'huh?' moments when referring to Sam as differently-abled as opposed to disabled. You can't land smack bang in the middle of England and instantly expect everyone there to communicate fluently in Afrikaans without having had any prior exposure to it, right? But a little enlightenment here and there will soon bring us all onto the same page.

So...special needs mom, hey?...certainly there are a few needs I have which might not fit 100% into the usual 'needs' box...being able to take my morning shower in a closed shower (especially now in winter...bbbrrrrrr) without rushing to beat my allocated three repeats of the balloon song (all the while keeping an eye on Sam) before he gets agitated...the need to not have to carry empty margarine/yoghurt tubs around with me...the need to successfully find accessories and equipment which can still accommodate a five year old who has not yet mastered certain skills generally acquired much younger (like potty training)...but I am not sure these needs could be considered special.

Could it be that the 'special needs' refers to the child? Hmmmm. An interesting concept and really quite possible. But still, does Sam have special needs? Or does he have the same needs as Meghan but just requires more thereof...more patience...more guidance...more care with his health...more creativity with his learning. Special implies extraordinary...being bathed in honey...carried around in style like an Egyption emperor...fed chocolate truffles at hourly intervals...all of which I can see Sam tolerating quite well. But if not special then what - Five Things More Needs Moms Won't Tell You? Doesn't quite have the same effect, does it?

I suspect a little further contemplation is required.

And what, you might ask, does any of this random gabbering have to do with the article. Absolutely nothing. It's not a bad article, go ahead and give it a read. The End xxx

Apologies for soiling your charmed life m' lady

Have I mentioned that the little dude now weighs 18kg's? That's the average weight of a 'normal' five year old kid. So the slow weight gain associated with RTS has been conquered...awesome! Well...um...mostly awesome. Just the 153cm's of mom carrying those 18kg's of awesomeness around is taking a little strain. And while most of Sam's body grows sturdy and strong, those little lower legs seem to be fading just as quickly. So walk the smurfy lil dude must.

Sam is having to re-master his walker. When he first got it, he used it the wrong way round as his fears and anxieties kicked into overdrive when encountering life so far off the ground, without any form of protective shield in front of him. To start with I was just so thrilled to have him straying from his knee-walking at least a little that I didn't consider the repercussions. But seeing that Sam was adopting more of a 'pushing' stance made me realise that he was in no way strengthening his core muscles which he needs to do if walking unassisted is ever going to be an option and also, he was in actual fact being given a false sense of security...much as a baby's walking ring would. No wasted moments though, he simply would just not have used the walker at all otherwise. Baby steps, see :)

Having grown more confident using the walker correctly around the house and at therapies, I decided it was time to hit the big, bad world! Off we went to our local Spar, the same place we tried out the 'incorrect' method. Determined to avoid all things 'normal' the first place Sam heads is....the fruit and vegetables aisle! He has a fascination with, mostly, bananas and pineapples and it is very seldom we leave a store without bananas so if ever you run out, you know where to go.

It would be fair to say that using the walker this way, which makes his dragging right foot a little more pronounced, certainly makes for an awkward-looking gait but hey, my general all round clumsiness and tendency to trip over non-existent obstacles makes me look a little awkward too. His smurfy swagger usually brings a smile from others, occasionally a pretending-not-to-stare stare and sometimes...a little more often than it should...a very purposeful look of disapproval.

Disapproval? Why so?

Because I have dared to expose our 'tragedy' to those who know nought of such things, who resent you for imprinting even just briefly upon their minds the fact that such 'imperfections' even exist.

Sound like an oversensitive mommy rant to you? Tis not! And here's why I know...as the deliverer of this disapproving look squeezed passed our awkwardness, my 13yr old daughter...usually preoccupied with watching herself doing various renditions of 50 Epic Dance Moves in the shop windows or reassuring me that she would not have jayboarded straight into that oncoming car had I not literally grabbed her by the collar...paused mid-Meghaness to note how Sam and I were both being scowled at. Like, wow, really???

Now it's fairly easy to understand why, although I see plenty fellow-journeying moms at therapies or out in force at get-togethers, I very seldom run into them in random places. It's really quite sad, don't you think? Iris House Children's Hospice gifted us all with these wonderful little 'ice breaker' cards for our kiddies...I'm going to ask them to add to Sam's, in big bold print, NOT FOR SENSITIVE VIEWERS! 

Nah...just kidding :D

Thankfully, our little 'really?' moment is completely overshadowed by more heartwarming incidents like when a friend, at the same store, has already packed herself, her family and her parcels into her car and is about to drive away when she spots your smurfy entourage across the parking lot and leaps out to hurry over and say hallo!!! A small happening to some, a meaningful heartfelt gesture to others xxx

And here's why...

...(for those who might ever have wondered) it is not a fab idea to have your overwhelmingly anxious child's dentist located in a shopping mall you frequent. Beeeeeecause...surprisingly...when three consecutive trips to said mall are purely for dental consults (the last of which ended in Meg and I discreetly trying to dispose of a margarine tub full of puke) certain smurfy lil dudes presume that every visit thereafter will involve more of the same. So it was with a touch of our own anxiety that we went off to run a few errands recently. When merely walking towards the entrance (on the completely opposite side of the mall) Sam transformed into a teeth-chattering, uncontrollably-shaking little bundle of nerves so Meg and I agreed to make it a super fast dash through the necessities, avoiding that side of the mall at all costs. How entertaining to, literally moments later, bump into.....guess who....Sam's dentist. Eeeeeeekk! After a quick exchange of niceties and firm reassurances that Sam was not, in fact, succumbing to hyperthermia we rushed through the centre like a couple of crazy loons and came out on the other end triumphant! I mean really, every puke-deprived outing is something to celebrate, right?

 

After spinal cord surgery, 2 x testicle surgeries, thumb surgery and a few ENT procedures here and there who would have imagined a dental procedure could be anywhere near as traumatic. After having our original theatre date bumped further along thanks to a doctor and his ego (not even gonna go there) which resulted in an unnecessary additional consultation (which would be the one that involved that dodgy marg tub disposal) we eventually made our way to the day hospital last week Tuesday. On the agenda was the removal of one tooth on the side which the dentist suspected might have had an abscess on it for some time, filling what ever else required it, applying sealant and then the removal of that little front, chipped tooth which was the one we were most concerned about as, having ground the tooth literally down into the gum, Sam had left nothing left to be gripped which meant the tooth literally had to be cut out of the gum. Sam was relatively calm until the moment we entered the theatre. Whether it was the absence of a pre-med, the presence of the dentist or the fact that the gas was administered at a much slower rate than usual...or a combination of all three...Sam freaked out. And by freaked out I mean he kicked, body slammed, smacked and pulled anything and everything he could make contact with. It was by far the most traumatic anaesthetic out of eight, we've ever experienced and left me feeling extremely unsettled and disorientated as I made my way back to the ward. Once the almost two-hour long procedure was over the dentist came in to advise that all had gone well. There certainly had been a nasty abscess on that one tooth which had drained once she pulled the tooth. She advised that both sets of stitches would dissolve in about 8 - 10 days and shortly after that we were on our way home. Over the next couple of days I kept a careful watch on Sam's wounds, focusing mainly on the front one where the tooth had required cutting out as it looked a little more "brutal" than I'd anticipated. On Tuesday morning I noticed that the gum where the abscess had been was very red and inflamed. I took a pic and e-mailed it to the dentist :

 

 

She felt that Sam might be having an allergic reaction to the suture and suggested I try removing the stitch. Um...sure...why not? After trying for almost an hour on Tuesday evening, I could not get Sam to stop flapping and head-rolling long enough to get hold of the stitch although he'd quite alarmingly allowed me to fiddle around in this mouth without much protesting. On Wed I took Sam off to the GP to see if she couldn't perhaps remove the stitch but once again Sam's flapping got in the way and so we made our way home with both the stitch and a prescription for an antibiotic to at least try and clear up the infection. On Wednesday evening, desperate to just put all this toothy business behind us, I lay on the bed with Sam and every couple of minutes would snip lightly at the knot and low-and-behold the darn thing came loose after a couple of tugs. Wooo Hooo! Hopefully the antibiotic successfully does it's thing and we don't have to even think about a dentist (nothing personal of course) for another six months.

 

Other than all things tooth-related, life has been low-key with the exception of a particularly exciting walk around our local pond all thanks to a psycho, stalker bee who mistook me in my violet fleece top to be a giant helping of something pollen filled and despite hysterical screeches and bee-deterring dances (much to the delight of fellow pond-visitors) lay in waiting as we completed our stroll to launch yet another farewell attack. Thankfully the random stroller parts which were hurled at it and frantic swiping and side-stepping eventually allowed us to escape. From now on, only black or grey garb shall be worn on sunny winter days when trying to remedy a bit of cabin fever with a leisurely walk. Pfffft.



One of Sam's current fads...umbrellas! We are so passed the whole "opening an umbrella indoors is bad luck" scenario :D

 

And for sure the only kid who is more fascinated by the scrolling numbers on the dvd player than the actual dvd playing.

 

It was several kinds of wonderful to get out of the house on Friday and spend some time with fellow journeying moms, made that much more appreciated by being treated to lunch by the Daniel and Friends Fund ladies, as well as each being sent home with a pack of nappies and tin of Pediasure. It being a different mall to that mall Sam was pretty chilled, despite it being over a busy lunchtime, and absolutely adored all the attention he got and precious new friends he and mom made...a truly blessed afternoon it was...

 

 

Many thanks to Marilyn, Kate and Lianie xxx

 

World RTS Day ♡ Why awareness is essential

Today, all around the world, hundreds of families are celebrating challenges overcome, journeys embraced and the incredible bond which exists between us,  all brought into being through a shared diagnosis of Rubinstein-Taybi Syndrome. A common sentiment rings loud across many...Rubinstein-Taybi Syndrome (or any other condition for that matter) does not define who our children are. 

I do still feel quite strongly about a particular element of our World RTS Day.  RAISING AWARENESS. And here's why...

Sam was delivered through an emergency c-section, two months prem, in severe distress. There was no cuddling on the delivery table, no pics snapped through happy tears by dad. In it's place a blue, lifeless body... barely 3 apples high... (aaahhh...smurf?) was whisked briefly over me to an awaiting incubator amidst mutterings of "abnormal" and equally devastating words.

Before I'd even had the chance to meet my little smurf, the paediatrician delivered the diagnosis. Rubinstein-Taybi Syndrome. 

The prognosis? 

Sam will never walk. Sam will never talk. A high risk of cancer can be expected, as can an average IQ of 30. A feeding tube was on the table as too was a look into a 'home'. No cruel intent on the part of the paediatrician,  he was sharing what he knew of RTS...which, having never heard of it before, was precious little. Hours later I made my way to the NICU filled with mind-numbing fear of what RTS was going to look like, feel like. But lying in that incubator, attached to an oscillator and way too many other tubes and needles, was a now purpley-blue little form...still barely 3 apples high with an oversized white hat. For me the diagnosis and subsequent prognosis fell into a deep, black hole to be revisited some other time...there was just too much loving and bonding and nurturing happening to care. 

But what if I wasn't me? 

Considered a high-risk pregnancy because of my age, my gynae asked early on into my pregnancy of I would be opting for an amnio. My answer was no, regardless of the result of any test termination would never be an option for me. Not at all a judgement, merely a fact. But what if I was perhaps a very young woman, unmarried, at the start of a promising career or even without any hope of financial comfort and not particularly swaying to either abortion or pro-life with any substantial conviction. What if, early enough into my pregnancy, RTS was suspected and I was delivered the exact same information? My choice, sadly inadequately informed, might well lead me to a decision which deprives the world of one more RTS sweetie. 

Raising awareness of Rubinstein-Taybi Syndrome, and other rare and unknown conditions, is vital. It will ultimately lead to doctors who are better equipped to prepare parents for the journey ahead by immediately creating a trusting affirmation that he/she knows what they're talking about and not merely rushing frantically to the nearest search engine to consume the exact same medical entries we as parents can. Sharing details or posts of fellow RTS families could help diagnose those who through lack of limited resources have slipped through the system. A perfect example for our avid Mr Tumble fans - little Lauren! Family and friends instantly recognise her as a sweetie with RTS. Had they not known Sam, she might not have stood out from all the other crazy-adorable kids in those videos. I never miss out on an opportunity to educate, waiting eagerly for the slightest indication in any interaction with a stranger to do so...sometimes they have me at 'hallo'!

So what if our young, unmarried mother with the fabulous career and life awaiting her was told the following instead:

Your child might not walk...unassisted. But will move around like a pro with the assistance of a walker, however most children with RTS do actually walk unassisted and even participate in sports like soccer and baseball and so much more. 

Your child might not talk...the same way you do. However they are more than adequately able to express themselves through sign language and AAC's, sometimes with delightful quirks of good humour. 

An average IQ cannot be predetermined as all folks with RTS, while sharing many similar traits, are also unique in their development and abilities. However knowing all the numbers up to twenty by the age of 2 can be expected,  as too can colours, shapes and the alphabet by age 4 and 50+ hand signs. 

Your child might be prone to tumours and cancer due to the gene which is effected, being the gene which produces the body's binding protein and is responsible for suppressing tumors. But with the ever-increasing number of people falling prey to cancer, can any one person be excluded from this possibility. 

In addition to the above, your child might have to face many medical challenges like seizures, a tethered spinal cord, immune issues, feeding issues, reflux and a few more. But a home filled with humming, twinning, happy-flapping, joy, admiration, determination and unconditional love is most definitely on the table. 

Creates a different picture, doesn't it? Education, information,  raising awareness. Vital.

If you had to ask this awesome bundle of smurfiness if, even for just one second, he'd ever felt his life was not worth living- what do you think he'd say?

If you had to ask this mom if, even for just one second, this child was not worth loving - what do you think she'd say?

A Rubinstein-Taybi Syndrome diagnosis should not be the end of a journey,  but the start of one ♡

Little Mr Smarty Pants

There is a song...about balloons... and colours...on Youtube. It is called... wait for it..."The Balloon Song (for learning colours)". Go have a listen. I did try download the link so I could share this delightful song with all of you but it automatically starts playing this song of delight and as the lil dude is lying sleeping next to me I can think of nothing more irritating right now than having him wake-up and demand to hear The Balloon Song. 

And demand he will because Sam listens to The Balloon Song on average (and no, 
this is no exaggeration) about 50 times. Each and every day. And while I don't deny the role The Balloon Song has had in Sam learning his colours, it does not take away from the fact that it is the most stuck-in-your-brain-like-no-other-song-in-the-history-of-all-songs kinda song. And yes, at random intervals throughout the day we will all find ourselves, to our horror, singing The Balloon Song.

And yet still, none of us have quite memorised the correct pattern of the song as Sam has. On Thursday evening Sam and I were enjoying our usual bathtime singalong and started on our first rendition of TBS. I sang 'red balloon', Sam signed 'red balloon'. I sang  'blue balloon', Sam signed 'blue balloon'. I sang 'green balloon', Sam signed 'white balloon'???

Uh no Sam... it's green after white. Started over but the same thing happened. And again. Eventually I asked Meg to bring me the iPad so I could help Sam right. The song started (feel free to sing along folks)

'Red red balloon, floating in the sky.

Blue blue balloon, floating up so high. 

(See? The lyrics are riveting!) 

White white balloon.....'

Say what? What happened to green? Oh pish posh. Green? White? What's the big diff anyway? Lol! 

Only after did I think about the dangerous can of worms I might have opened by bringing the iPad into the bathroom but thankfully there was no request of this kind from Sam the following night. And nevermind twinning (a fascinating quirk RTS peeps have which requires that they be, for instance, watching the same movie on their iPad and the tele at the same time) Sam has now acquired Tripling... with TBS on tv, on his iPad and homemade balloon flashcards for that extra tactile effect!

We've had a bit of a disappointing setback with Sam's teeth. Sam was meant to undergo a dental procedure this coming Wed to (finally) remove that little chipped front tooth (little as in milktooth and the minimal amount of actual tooth left after being ground right into the gum by the bottom tooth). However the dentist's office phoned on Friday morning to say that there's been some or other misunderstanding and Sam's procedure has been rescheduled for the 23rd July. What??? I'm having to keep the kid on 4-hourly doses of painmeds to limit the amount of mouth-bashing and obvious pain and discomfort he's in. Just waiting till the 2nd was gonna be a long stretch, how will he manage till the 23rd. Very distressing indeed. We all know how awful a toothache can be. So we're trying to get another anaesthetist on board who might be able to fit Sam in on the 11th July... please hold thumbs that this works out and he doesn't have to endure another 25 days with this wretched tooth :( 

So about that further comment upon completion of processing...

...we received the official report from the neuro-paed this morning. Sam's newly adjusted diagnosis now reads Rubinstein-Taybi Syndrome, Cerebral Palsy and secondary Autism.

I knew it was coming. I attended a lecture a couple of months ago given by JP Maes on the Maes concept for physiotherapy in kids with CP or similar neurological disorders. I was tagging along as the very minor contribution to the "similar neurological disorders" group. Within minutes into the lecture both the information being shared by JP as well as the little boy being focused on in the  documentary, had me sitting up straight. There were just too many similarities between this little boy and Sam at that age. That, the information I Googled on periventricular leucomalacia and Dr neuro-paed's comments during last week's examination on lesions caused by brain bleeds in utero, abnormal reflexes, etc had me comment to Chris on the way home already that she was thinking CP.

The report also advised that Sam was aggressive and seemingly frustrated...and that he certainly has been for the last 2-3 weeks. So much so that we had to make like a hermit for pretty much most of that time. And yesterday we found out why at Sam's dentist appointment. He has three teeth which have decayed all the way down to the nerve and, according to the dentist, he must be in severe pain.

Aaaahhh...the joy of verbal limitations.

About two years ago Sam chipped his front tooth on some sushi (plastic Nemo in the bathtub). It was noticeable but not too problematic. A few months later the tooth was further chipped during an intubation. Over the passed few months Sam has progressively ground that tooth right down to the gum with his bottom tooth and about a week ago it started turning brown. Hence the dentist appointment which, thankfully, lead us to the two 'brown' molars at the back which haven't even properly broken through yet. So on the 2nd July we'll be doing our second and hopefully last anaesthetic for the year. A bit of a wait and not so wonderful theatre time at 11:30am, but what can you do  *shrug    

Sam's current infatuations are carousels and flags. (Thanks Mr Tumbles) The flags are an easy enough hit, a short drive just through town usually has Sam exclaiming in excitement. Carousels? Little bit of a more challenging find they are. Luckily there is a small 3-horse carousel in the same centre as the dentist. Walking passed it was an absolute squeal (literally) for Sam on Monday, which was a public holiday and ensured that the carousel was constantly being ridden by other kids, to Sam's delight. As with most of Sam's infatuations, he prefers viewing them from a distance and shudders in fear if you get too close.

Sam was so well-behaved at his dentist appointment yesterday and allowed a thorough examination of his teeth, albeit through some harsh sounding but luckily unproductive gagging. Seeing as he'd frantically started signing carousel the moment we entered the parking lot, I promised him a stroll plastit after our appointment. What a bummer!  Mid-week morning meant no carousel-riding kiddies for Sam to watch :(

My makeshift homemade 'safer' Sam-friendly variation on a flag...he seems happy enough!

xxx

Eating Matters

One thing about sensory challenges, life is never boring or predictable. And today's no-no's become tomorrow's acceptables at the drop of a spoon...and vice versa.  

 

Up until a couple of weeks ago Sam was sporting a ferocious Cipla Actin-induced appetite which was satisfied by nought and which almost always overpowered his sensory aversion to his usual no-no foods. One night, having just finished dishing up our supper, Sam spotted my plate of chicken and whatnots while I quickly pureed up his own food so that we could eat together. Sam kept pointing at my plate and signing "eat" and eventually, in the hope of trying to finish his dins off in peace, I obliged and gave him a mouthful and waited for the gagging.  A minute or two later his mouth was empty! I was like "What? Really"? I'm standing here mushing up meat and veggies while you just smoothly chewed your way through CHICKEN!"

 

Keen to make the most of this sudden new accomplishment I offered Sam another bite and yet another and then eventually we all settled down to eat. My eyes caught a glimpse of something brownish-yellowish on the wall. And then another such blob on Sam's play mirror and yet another on the floor. I asked Meghan to see what it was, but she just shrugged that she couldn't make it out. Closer investigation revealed the unknown matter....chewed up chicken! What a laugh we had. And a few days later when Sam insisted on some unpureed cottage pie from my plate we saw exactly how the chicken had landed up plastered all over the place...he would chew it to the point of no recognition and then frantically brush it off his tongue and just fling it. Funny little boy :)

 

I have since removed the Cipla Actin from Sam's meds as I think it was largely contributing to his misery by making him almost insatiably hungry but still offer him new textures all the time. This afternoon Meg and I had egg and mayo sarmies for lunch and Sam quite likes egg so I made him his own half a sarmie.  Sam still shudders with displeasure if you make him hold and bite his own food. If you break up a cookie and give it to him in a bowl he will easily enough eat it as it requires a limited amount of handling before it is safely in his mouth. But as yet he doesn't seem able to tolerate the sensation of having to bite off pieces of food...and his egg and mayo sarmie was no different. Every time the filling touched his mouth he shuddered. So this is how egg and mayo sarmies are eaten in Smurfville...

 

 

 

So at last week's neuropaed appointment, Sam was prescribed some Risperdal to try and manage his, currently, very high sensory and anxiety issues. I was really worried about having to try yet a new med but NNP assured me that Risperdal is very often successfully used in children with Autism. We are on Day 6 so far and although we were told that we could only expect to see a real difference in about 3 - 4 weeks, I do have to admit that there is already some improvement with being able to cope with issues which would usually send Sam over the top. The previous Sunday we had attempted a short trip to a local shopping mall...it lasted all of about 30 seconds and ten steps into the mall before Sam just freaked out and he and I spent the remainder of the trip in the car singing "What's your favourite colour?" This passed long weekend we managed not one but TWO shopping trips with very little difficulty. In addition, as hoped for by NNP, the Risperdal seems to be having an effect on Sam's sleeping too and we've had only two really disruptive nights out of the six. Here's hoping this is that much-needed light at the end of this particular tunnel :) Tomorrow's dentist appointment is going to be the real test (Eeeek).

 

 





And when life becomes too challenging, we swing...... 

...and swing some more xxx 

This just in....

...just had a call from NNP who, after our consultation on Tues, thought it best to go over Sam's brain scan images with a radiologist.

She confirmed the presence of the periventricular leucomalacia, advised that the previous radiologist had mistakenly advised us that Sam's Corpus Callosum is in tact as, on the contrary, a third of it is absent...and kindly referred me to someone who could help both me and Sam with coping mechanisms for Autism.

*further comment to be uploaded upon completion of processing  :)

Hey! I was happy in Holland :(

There must be very few special needs parents who have not, at some point,  read through the piece by Emily Perl Kingsley...

 

WELCOME TO HOLLAND

 

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

 

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."But there's been a change in the flight plan. They've landed in Holland and there you must stay.The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland."

 

 

And the thing is, I was doing quite okay in Holland...tulips and windmills have become my 'thing' and I have become very passionate about the lovely things in Holland that those in Ireland miss out on. 

 

But now, after five years in Holland we're being pushed along to Belgium.and I'm like NO! That's not fair, we've laid our hearts in Holland. Why weren't we at least given the choice, seeing as we were bumped from Ireland, of whether we would prefer Holland or Belgium. I mean really! It's.just.not.fair! Okay sure, it's not like we're off to Egypt which would be a more radical change but there's only so much vacationing a person can handle. And if we absolutely HAVE to go to Belgium couldn't somebody have told us that in the beginning? Like hey guys, instead of going to Ireland you guys are going to Holland AND Belgium...some times you'll spend a fair amount of time in one before needing to cross over to the other but there will be times when you'll have one foot in Holland and another in Belgium. 

 

Yeah, that would definitely have made for a much smoother transition. Smooth is just not how this ride has being going lately...

 

The amazing news that Sam does not have the Agenisis/partial Agenisis of the Corpus Callosum more often associated with Rubinstein-Taybi Syndrome and that there has been no retethering of the spinal cord, had us all in a jovial mood and so we planned Sam's first ever birthday party. 

 

I suppose I can be 100% honest and say I truly believed that Sam would be walking by his 5th birthday. Heck, I thought he'd be walking by his 4th birthday. I read an article round about the time of Sam's birthday about 'living loss' or recurring grief which effectively is repeatedly dealing with the loss of the child you thought you were going to be bringing into this world. While I completely relate to the concept of the recurring grief (which can be brought on by occasions like birthdays) I do believe that, in spite of his RTS and more recent additional 'issues', the little personality inside from which shines his sense of humor, his affection and his smurfiness, is the very essence of Sam which would be the same regardless of the 'packaging' it came in. For me it's not so much a case of mourning the loss of the child I never had but more mourning the struggles the child I do have, has had to battle through and more heartbreakingly, those still to be encountered. 

 

The Monday before Sam's party I was asked to forward the MRI report to the new neuro-paed we were scheduling an appointment with. Only then did I realise I'd never seen the report so requested a copy from the radiologist and forwarded it on, only taking the time to read it myself a couple of days later seeing as I already knew what was in it. Or so I thought. 

 

And there it stood in black on white that the Corpus Callosum is in tact and that no syrinxes have formed on the spinal cord as a result of the original tethering. It said that the conus now lies on the L3 vertebrae which I can't say I was fabulously impressed with but because no post surgery MRI was done we don't know if this is the original post-op result.   

 

The report also contained the following :

 

"Multiple periventricular low T1 cysts are demonstrated likely consistent with Periventricular Leucomalacia sustained during perinatal life.

 

A lumbar segmental anomaly is identified with sacralisation  of a lumbar-type vertebra....Contiguous disc bulges are identified at the L3/4, L4/5 and L5/S1 levels.

 

Spina Bifida from the L5 to S2 levels.

 

Supratentorial, periventricular leucomalacia is identified."

 

Turned to the front page to make sure this was definitely Sam's report. It was :(

 

Well Hallo Belgium!

 

After reading through more of the report and with a little help from Prof Google it seems that the correct term for the lower vertebrae condition would be Spina Bifida Occulta . And the rest of the stuff? Who knows. Thankfully though our appointment with NNP (new neuro-paed) was bumped up from 22 August until, well, this afternoon...in almost exactly two hours to be precise. That type of being bumped I can handle.

 

But despite feeling a little blindsided by all the new info and more than a little battle-weary, we partied :)

 

Jumping Castles are one of Sam's current fads...so Aunty Cammy insisted on providing him with one for his birthday.

 

Fad or not, Sam was a little unsure at first but soon got into the spirit of things

 

Teletubbies meet Buzz Lightyear...Telebuzz's? Buzztubbies?

 

 

Another, rather trying fad, books! books! books! Sam goes nowhere without a book, he bodybashes himself to sleep holding a book and more often than not falls asleep on top of it, he swings with a book, eats with a book, has a nappy change with a book. So can you imagine how much fun bathtime is? And yes, we've tried the waterproof baby bath books...they just don't provide the same quality of sensory input that flipping through pages and biting covers does. Until we find a suitable alternative or until (oh yes please) this fad passes, bathtime every evening will be accompanied with hysterical help-I'm-being-murdered-screeching blaring from our home.

After a wonderful long Easter weekend in Stilbaai (although less than wonderful journey there compliments of the frightening number of reckless drivers on the road Thursday evening and a very grumpy smurfy dude who was not dealing well with the traffic delays) we started our week with Sam's MRI on Tuesday. I was a little tense about Sam being only third on the list and managing till 10:00 am without his morning bottle but with the exception of a few iffy moments where he seemed on the brink of a major wobble, he actually surprised me by managing even longer as the MRI department only sent for Sam at 10:40am. The entire scan took about an hour and forty minutes. The anaesthetist initially planned on trying to make do with a Laryngeal Mask as opposed to going with the compulsory intubation as per the RTS Medical Guidelines, seeing as there was no real procedure taking place. Sam having had seven previous anaesthetics, all with intubation from the onset, I was curious as to how his airway would react but the anaesthetist reported that Sam's airways collapsed almost immediately and so she had to intubate after all. At least now we know for sure that it's completely necessary and most definitely compulsory. 

 

Also as a precaution, an IV was placed... in Sam's right hand. The right hand of the same kid who almost always spews his stomach contents at the slightest contact from anything remotely resembling a plaster. Once again we couldn't even secure his hospital Id tag around his wrist upon admission. So an IV? Simply asking for trouble, despite there being no stomach contents to spew. Before even opening his eyes properly Sam started trying to bang the plasters off his hand, stopping only to alternate with frantically trying to pull it off himself. Before we could be discharged Sam had to have had something to drink/eat and passed urine. After a while the nurse eventually agreed that as long as the IV stayed in Sam's hand there would be no drinking or eating happening. Once it had been removed the starving little dude, now 17 hours since his last Pediasure intake, polished off a bottle, a bowl of jelly and custard and a yoghurt to follow when he repeatedly signed more. Sort of explains his sporting a healthy 16.9kg's on that no-so-smurfy-anymore frame. After waiting patiently for a wet nappy which would normally okay a patient for discharge, I shared with the nurse that Sam can go anything from six to sixteen hours without urinating especially when there are constipation issues at play (inevitable with anaesthesia) and so we left the hospital shortly thereafter...minus a wet nappy and the MRI results. 

Feeling a little sorry for himself

 

But still managing a smile

It was a little disappointing leaving without the results, particularly because with the last MRI they were sent to the ward almost immediately. The radiologist though had requested the previous scans images and reports which didn't quite make sense to me as I felt that having a completely 'fresh' review could hardly be a bad thing but nevertheless rushed the package along to the hospital early Wed morning, with a more than usual wheezy Sam in tow. By lunchtime on Thursday, after still no feedback, I called the neuro's office and was assured that he had received the results but was still going over them. Concern started creeping in at an alarming rate. 

Eventually on Friday afternoon the neuro guy called. Pheeeeeeeeeew!

He said that Sam's spinal cord was a little more low-lying than normal but a definite  improvement at L2 as opposed to L4 pre TSC surgery. He also shared that sometimes with a tethered spinal cord, the stretching of the cord can result in a Syrinx (or several) in the cord which is effectively little holes which form but was happy to advise that Sam's spinal cord is looking very healthy. And then he shared a rather profound bit of information regarding Sam's brain scan! 

Brain scan? Didn't know Sam was having a brain scan, did you? Nope? Me neither! For like forever I've whined about how intriguing it would be for Sam to have a brain scan to confirm whether he has the Agenisis/partial Agenisis of the Corpus Callosum often associated with Rubinstein-Taybi Syndrome. Not because it would cause an earth-shattering change to life as we know it but in the hope that the knowledge, if confirmed, together with more relevant and deeper research might lead way to my being able to sort of more effectively focus on the areas of development which Sam seems to struggle with the most. I guess a better way to describe it would be an incessant fear that I am missing something, that there is a wasted opportunity to help Sam reach his utmost potential simply because of ignorance or lack of knowledge. Watching as many of Sam's RTS siblings achieve milestones Sam has yet to conquer, often at less than half his age, has for sure left me wondering sometimes. Not jealous. Not bitter. Just really puzzled. So with Sam seemingly determined to even do different differently I would expect nothing short of a puzzling brain scan. And puzzling it was. Sam's scan showed a *normal* brain. 

Hysterically happy dancing? Absobloominglutely!

I waited in silence after the doc delivered his news for the "But..." only to hear the neurosurgeon admitting with amusement that he too had been a little surprised, so much so that he had phoned the radiologist to double check that there had been no mistake. The radiologist reassured him that Sam's Corpus Callosum is completely intact and very much present. The doc explained further that apart from tiny bubble-like cavities surrounding the blood vessels, most often associated with IUGR (which I confirmed being diagnosed with at 24weeks), referred to as luposomethingcephaly (my brain was struggling at this point with the wave of thoughts bombarding it - sorry) Sam's brain appeared as that of a typically developing child. How incredibly fascinating. The next step now is perhaps a little less jovial - a referral to a   developmental paediatrician to rule out any additional issues at play in that awesome little mind. We know there's the Sensory Processing Disorder which I've often complained seems more of a challenge to Sam than anything else. Who knows. I'm not even going to try and entertain my own assumptions at this point xxx

Shake it up baby now....

...twist and shout!

I have no conscious recollection of Sam ever having heard that song but somehow it must be playing over and over in his head because the second his pushchair rolls through the door of any shopping mall that's precisely what happens. We make sure that every shopping trip is accompanied by the ipod competing with the usual mall-raucous to belt out Heads & Shoulders and other equally delightful kiddies songs, which tunes are accompanied by a little dude whose entire body shakes, flaps, twists and occasionally squeals...not always harmoniously...in response to the music. And when I say entire body I mean it in every essence of the word....head,neck, arms, fingers, wrists, legs, feet and even the palm-tree-like tufts of hair on his head each go off at their very own rhythm. It inevitably creates a reaction. More often than not it's a friendly smile or lighthearted utterance about him being happy, etc. But sometimes it's a plain and undisguised stare, the kind where the deliverer of said stare glances out of the corner of their eye, quickly looks straight ahead with obvious feigned indifference and then just as you're about to pass from their view they do a sudden Ace Ventura-style headwhipping to take a better look at the blur of movement being barely restrained by the straps of his stroller. It's a fascinating scenario. I've only ever met two other kiddo's with RTS and although we've never strolled through a shopping mall together, I don't believe they are quite as twisty-flappy as Sam which makes me wonder if there are any other RTS kiddo's who do it and how their folks deal with the attention. Some days I just ignore it, some days I play a little private game where I try turn my head at the precise moment I think the Ace Ventura-style headwhipping will take place. Some days, like today, I'm just not up to it. So when we headed down to the mall this evening  left the ipod at home. And? There was twisty-flapping galore. It ain't the music on the ipod he's flapping to so it's gotta be the music in Sam's head :)

So on Monday we had our  appointment with new Neuro guy. It was an interesting process just getting to the hospital. Sam's bowels had been a bit sluggish so I'd increased his Movicol for a day or two which means, in turn, that there'd be a day or two of 'cleansing' when the Movicol kicked in. Would it be our life if that day of cleansing did not happen on Monday? Absolutely not. Sam had two relatively large nappies early in the morning so I felt we'd be free from the chaos always caused by Sam needing to be lied down for a nappy change any place other than my bed. We left the house en route to Aunty Justine's, a total journey of about 8 mins, in which time Sam delivered the ultimate cleanout I thought we'd already conquered. Rushed inside and worked through a tense but manageable nappy change saved only by the fact that it was being done on a bed at least. Then in the following eleven/twelve minutes max it took to the hospital, yet another cleanout was delivered! Seriously? Granted not as explosive as the previous one but without the safety of a bed to clean it on. So I drove to the very end of the parking lot, completely isolated from any other car where hopefully Sam's freaking out would not be heard by anyone. Arrived just just on time for appointment, ridiculously flustered. Luckily the 37 mins we waited gave me some time to catch my breath and cool down. New neuro guy is really nice so 37 min wait was quickly forgiven. He gave Sam the best possible examination you can perform on a squirming protesting little dude, we chatted about scheduling another MRI and then he asked me to please bring in the original post op MRI disc for comparison, which posed a very slight problem in that there never was a post op MRI. Seriously? Well better late than never right? Even though it's approximately 3yrs late. #eyeroll

So leave docs office and make my way through the door only to come to a grinding halt. The sunshine we'd arrived with had been replaced with a strong wind and drizzle. Firstly, I very VERY seldom wear skirts. I had a skirt on. And not just any skirt...an A-line and particularly flairy skirt (I so wished I'd done the ironing on Sunday night like I'd originally planned). And secondly, I'd parked as absolutely far away from the door as I could. I awkwardly maneuvered myself and Sam to the paypoint, trying to maintain my decency, shield Sam's summer-clad little body from the elements and pay my parking card at the same time. Grabbed the coins from the change drawer and dashed to the car, unlocking it and unfastening Sam's straps while looking in my bag for my paid ticket. The ticket. Nowhere to be found. S.E.R.I.O.U.S.L.Y!

I hadn't taken it from the machine.

Refasten Sam, relock car and dash back to the paypoint like a, now,frizzy-haired loon. Of course the ticket wasn't there, that would be too easy. Luckily the security guard remembered me being there just moments before and scooted around the entrance, thankfully finding my ticket caught in some plants where it had blown. Amidst mouthfuls of wayward hair, uttered my eternal gratitude and offered a repeat display of comedy departure. Yes...seriously.

The hospital phoned today to say that Sam's booked in on Tuesday already which is a little short notice and only at 10am which brings with it it's own set of challenges trying to calm a starving little Smurf who doesn't understand why he's being deprived of his morning bottle an porridge. Let's just pray that it's all made worthwhile by an MRI which clearly shows that there has not been a retethering of Sam's spinal cord.

And sleep? Well those glorious 14 nights we were spoilt with a couple of weeks ago don't seem to be making a comeback any time soon. We're back to 4-6 hours of thrashing around at night, mostly caused by an impossibly congested nose despite Sterimar and Iliadin sprays, eucalyptus misting and Karvol drops on the linen. Last night though Sam seemed to have an intense, unbearable itch all over his body. And tonight were doing continuous apnoea's.

I tried to sneak some time on the computer to have a go at pimping Sam's blog a little but as you can see, it did not go well - just as I started Sam woke up. So please excuse the rather random design for now.

On Sunday we were invited to an Easter egg hunt by Iris House where Sam had such a good time and no matter how excitedly he flapped and 'danced' the only looks he got were those of love...

All a mom wants :)

I was absolutely determined to hold out posting until I got an opportunity to do so from my pc...well that worked out well, so here we are :/

Iris House Childrens Hospice contacted me last week to say they're coming to do a respite care sit yesterday morning so I had mentally prepared a jampacked four hours of ironing, taking up the hems of the several pants hung over my chair that I can't wear (would be hysterically happy to one day buy a pair of pants that don't need shortening) and then of course had at least a two hour blogging session in mind. However, the IH ladies arrived and Sam seemed so completely relaxed and 'okay' and there were a few errands I needed to run yesterday which were going to be a bit tricky with Sam, like needing to have a few docs certified at the local police station for Meg's high school application (Eek). Which local police station has only 2 very steep, very short steps at the entrance...no ramp in sight...very disabled friendly. I also then needed to go deliver the application which would entail having to strap Sam into his pushchair to walk up a sloped driveway with my dodgy, braced ankle just to literally hand the envelope over and leave again. Unfortunately, while the idea of a nicely laid out post with neatly, appropriately detailed pictures was attractive, the thought of ironing and sewing compared to an hour to myself was not. And so Sam had his very first 'solo' respite sit! And it went really well. He refused to drink his Pediasure which was sort of expected but I was only gone for just under an hour-and-a-half so that wasn't a huge trainsmash.

And the dodgy ankle brace means that I can finally drive again. Big whoop whoop! Which means that Sam could return to his therapies for the first time in  almost 8 weeks. I anticipated a really resistance-filled physio session on Friday but Sam surprised both Heidi and myself. Of course there was some moaning, but there always is. I actually think it would be fair to say it was one of Sam's most fruitful sessions yet and with him having four-and-a-half years of therapy under the belt, that's no careless statement! With my ankle taking so long to heal I've had to push Sam to see walking as the first choice of movement and not so much mom's hip. So wherever we've needed to go, whether it's the short distance to the bathroom or the much longer distance from the car to the door, I've insisted Sam walks it with me holding him steady on his waist. Realistically, he's still not going to walk any time soon (even though his 5th birthday looms barely a month away) but he's definitely becoming less afraid and fear is ultimately what's holding him back right now. Last week I needed to pop into our local Spar and decided to take Sam's walker along. It was the most entertaining trip we've ever had to such a basic store. Of course Sam loved that he was navigating his own way and gestured wildly while exclaiming with delight, in an especially sing-songy voice, at things he recognised like bananas. At the end of the trip the five items we purchased took us more than 45 mins but it was well worth it. 

We're still battling to secure an appointment with the neurosurgeon who operated on Sam's tethered spinal cord which is becoming increasingly frustrating for a host of valid reasons, not least of which would be that as he performed the surgery he is obviously the person you'd most like to do the follow-ups and also, we really liked him and his caring and compassionate nature, which is probably the reason why he's chosen to discontinue private practice and focus only on his work at the state hospital, where we are not welcome. Thankfully, by way of kindness, we've been referred to a new neurosurgeon. The orthopaedic surgeon taking care of my ankle insisted on giving Sam an impromptu and free examination at my last follow-up. He completely agreed with the need to have Sam undergo a follow-up MRI of his spinal cord and immediately requested his assistant schedule an appointment for us with the neurosurgeon just down the passage, who he highly recommends. So we see the neuro this coming Monday...finally!

I do tend to become emotionally attached to Sam's specialists. It takes me a long while to establish trust, so to have to keep rebuilding relationships can be a bit exhausting, not to mention the nagging guilt. But I do have to admit that I now absolutely advocate the need for very occasionally acquiring a new perspective. For eighteen months we have battled, unsuccessfully, to try and resolve Sam's sleep problems and find out once and for all what prevents him from resting peacefully and drives him to such extreme frustration that he resorts to hours of harmful body bashing, despite us having tried almost every medication available. As I mentioned in my last post (I think?) the prof paed we saw on 10th March changed Sam's reflux meds from Losec to Nexium. Sounds kinda insignificant, right? Well for fourteen consecutive nights Sam slept through most of every night. There would be an occasional 30 seconds bashing here and there but nothing even as remotely distressing as before. He's now unfortunately got a bit of a snotty nose so we're back to disrupted sleep again, but still very manageable. He's even been taking afternoon naps again, the shortest one being today of just over an hour while the others have lasted up to two/two-and-a-half hours. And a kid who's finally getting some decent sleep makes for a much more relaxed little dude all round... whether it's at therapy, in shops or spending five hours next to a hockey field each day for Meg's recent hockey tour.

Sam also seemed to be in a bit of a eating slump at the time we saw Prof paed so he suggested putting Sam back on Cipla-Actin and what a barrel of laughs that has been, he's now constantly starving. And where we had found ourselves back at that place where I was pureeing things like cooked-to-the-point-of-being-mush oats and even shop bought baby food (Yes, really), all of a sudden Sam was eating pieces of apple, jelly tots and even chocstix (chocolate covered pretzels). And anyone eating in his presence without his own mouth chewing is a no-no. We were at a braai (BBQ) one night, Sam having had his dins much earlier, and I was just about to bite into my rib when a little hand reached over and slowly guided the meat to his own mouth. If it wasn't for the chilli spice on it I might have let him take a nibble just to see his reaction. 

Sleeping and eating.... what more could a mother want for her child? Okay... maybe pooping. Oh...and talking...and walking would be nice too :)

Ending off with pics ♡

For a kid with such major sensory issues,  Sam is very tactile and usually needs to be holding onto someone whether it's Meg's hand in the car, Mom's hand while he iPads or Mom's arm while he sleeps. I adore this part of Sam ♡  

  Another cute habit Sam has is what's commonly referred to by our RTS community as 'twinning'. Twinning is basically when, for instance, our kiddos want to watch the same thing on tv and their ipad at the same time. It can be quite tricky successfully timing both devices perfectly but I have to say we've quite near mastered it.  

   It's such a 'smally' for some but the fact that the lil smurfy dude can transition into a sitting position independently again still makes me so happy. No achievement is sweeter than when accomplished despite challenges, lost through trauma and then mastered again ♡

    Sam getting some much-missed flapping in next to the hockey field

     Making himself at home at Overmeer Guesthouse    

      Dad kinda loved the kingsize bed... less chance of being whacked by a stray,  thrashing arm  

       The only time Sam slept during the six hours there and the six hours back - and this snooze lasted all of about 15 mins. 

        Meg on the other hand slept almost the whole way... not unusual for her

        

Sam's early birthday pressie from Bramps