tag:blogger.com,1999:blog-88481234262042065032023-11-16T08:58:12.873+02:00SAM...MORE THAN A CONQUERORSharing the journey of Sam the Conqueror, a medically-complex, differently-abled warrior whose precious spirit refuses to surrender to the limits imposed on him by his multiple diagnoses : Rubinstein-Taybi Syndrome, Cerebral Palsy (Periventricular Leukomalacia and Static Leukoencephalopathy) and Epilepsy. Nickyhttp://www.blogger.com/profile/16316970339424084688noreply@blogger.comBlogger320125tag:blogger.com,1999:blog-8848123426204206503.post-73170585236150908332022-09-22T10:31:00.006+02:002022-10-18T22:41:08.229+02:00Sam's Mighty Roar <div>Four weeks ago, today, Sam and I “woke” from our most profoundly sleepless night in thirteen years and, those who know us well, know that there is a significant collection of sleepless nights in the running for that accolade. The Precedex/Morphine cocktail Sam had been fed through the CVP line in his neck after surgery (Supraglottoplasty/Subglottic Stenosis follow-up) ensured a deep-enough post-theatre nap…but just as I was about to unpack my illustration tools for a kiddies’ storybook recently penned, in anticipation of the three sedation-filled days which were meant to follow, Sam’s eyes fluttered open. And there he and I sat throughout that Wednesday night…a 54kg strapping young lad, without the cognitive or communication skills needed to process the absolute terror of his surroundings and all the lines and tubes invading his (already) sensory traumatised body, too petrified to so much as move his head. And an emotionally depleted mom, at her most helpless and heartbroken, watching her precious boy’s tears trail down a bewildered face, frozen into a silent cry, devastated by not being able to comfort him the way he wanted. And I thought about my little book (Sam’s Mighty Roar) which shares (in an age-appropriate way) why Sam’s frustrations and anxieties often end in shouting fits, mentioning anxiety triggers like sensory overloads and the like, but not moments such as these…moments which so many of Sam’s differently-abled peers have to overcome, often with an unintentional disregard of the emotional impact which, with their lack of adequate communication skills, is regularly commended as a “high pain threshold”. On this night Sam’s roar was not so mighty. But his fighting spirit was!</div><div><br /></div><div>A few hours later when the ridiculously uncomfortable chair I’d had to sleep in (thankfully so, as it kept me fully awake through Sam’s first night) began to feel just the right amount of comfortable for a late-afternoon nap, the first signs of that Mighty Roar resurfaced, prompted by a tummy which, after a 48 hour long fast, was no longer bowing down to anxiety. Jelly was administered STAT and shortly thereafter, despite Sam’s urine catheter removing itself (OUCH), Sam actually settled in for a decent night’s sleep. Fellow DJ’ing parents (Different Journeying parents – not the music kind…although possibly them as well) will relate to the consistent flow of movement and noise in an ICU though, so mom, instead, watched how the moonlight rendered the steady movement of a crane in the harbour as it loaded a ship, a peculiar alien-like illusion and pondered on the many entertaining moments sleep deprivation provides! </div><div><br /></div><div>By Friday morning, after doing well on just 10mls of nasal cannular throughout the night, the supernatural healing which had been prayed over Sam by our church community was boasting its glory as both Sam’s oxygen and sedation cocktail were weaned off and, after consuming three helpings of macaroni and cheese (yes…breakfast, lunch AND supper!) and acquiring a new drinking skill, Sam’s feeding tube was removed on Friday evening. Another peaceful night ensued and mom even managed to catch a couple hours of sleep as well, with the occasional wink from my alien friend. Late on Saturday afternoon the planned five-day ICU stay was firmly cut short as Sam made his way home from his 24th surgery (give or take a set of grommets or two forgotten from his medical overview – mom fail #1752). </div><div><br /></div><div>The Supraglottoplasty, to repair Sam’s laryngomalacia, was extremely successful (as shared by Sam’s <b>phenomenal</b> ENT surgeon), requiring less tissue to be cut away than originally thought. Sam’s Subglottic Stenosis though is something he will continue to live with, exacerbated by fragile lining of Sam’s airways and making the airway vulnerable to rupture should the incorrect size tube be used during intubation. Hopefully the remedied laryngomalacia will alleviate the need for so many intubations and has already proven its success by creating the airway space for an EVEN MIGHTIER roar! Yes! Who saw that coming?? </div><div><br /></div><div>Just a week after the surgery, while still navigating the usual (but oh-so manageable) emotional rollercoaster that follows all of Sam’s procedures (heightened anxiety and clinginess, night terrors which result in even-more-than usual sleep disruption, etc), I found myself in awe of and unimaginably thankful for how incredibly well Sam recovered from the surgery…and, too, for the outpouring of love and care from so many…thank you for all the messages, thoughts and prayers. </div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyDY0WN-c041fyqJJhZJvOyHrnFuHsl2zx-ykXOIX_2Nra2wg4vTWLKVFUM3WKb2wD2THKAacbUkMn5A5e40FCwfnRJbTIDDqUNpWcoyRml5AbSuiogRZMZfUhhwIT4PRlTfFFYpyIWitfkO97cayzUafU2hLfE1Jqtk3aW9WNluR_8tOU9CKitZVy/s4624/20220831_120653.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4624" data-original-width="3468" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyDY0WN-c041fyqJJhZJvOyHrnFuHsl2zx-ykXOIX_2Nra2wg4vTWLKVFUM3WKb2wD2THKAacbUkMn5A5e40FCwfnRJbTIDDqUNpWcoyRml5AbSuiogRZMZfUhhwIT4PRlTfFFYpyIWitfkO97cayzUafU2hLfE1Jqtk3aW9WNluR_8tOU9CKitZVy/s320/20220831_120653.jpg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrxW3hF59oJo6NkdTpm8CuyeQCq14yzTVZE0Yiauw6U4lQ0T-vKyvnlzyjx1xv7Nt5y2E60KXZhlifuu7eQx3JL3x6LctCGpOxtkENREdn0a4X42UwNgRf69qynr316-Ie4yoUPkE-kaChH6o5yGE5ulPeSyuXqEz44SU02_k3gcBlvjdo6khFu0o7/s4096/20220901_191256.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4096" data-original-width="3072" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrxW3hF59oJo6NkdTpm8CuyeQCq14yzTVZE0Yiauw6U4lQ0T-vKyvnlzyjx1xv7Nt5y2E60KXZhlifuu7eQx3JL3x6LctCGpOxtkENREdn0a4X42UwNgRf69qynr316-Ie4yoUPkE-kaChH6o5yGE5ulPeSyuXqEz44SU02_k3gcBlvjdo6khFu0o7/s320/20220901_191256.jpg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivYXK7jq7m5UY-lN7op58lvBlQ2fIke-RIoobfPJ7DRnu25_vdJB-GCcVtrnFlkJpxfGao4J8lI5UDed5Xb1iUtFbNKm3yIzMjJDKYY8uJbkdrt0_-dQHt_NSkpNou3ZZ9cyxQ2WpMfr0MFmGfBYPxxvo4Rau1oRVMtRxIioyXMkxDzkamUqQNGq5u/s4096/20220831_185406.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3072" data-original-width="4096" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivYXK7jq7m5UY-lN7op58lvBlQ2fIke-RIoobfPJ7DRnu25_vdJB-GCcVtrnFlkJpxfGao4J8lI5UDed5Xb1iUtFbNKm3yIzMjJDKYY8uJbkdrt0_-dQHt_NSkpNou3ZZ9cyxQ2WpMfr0MFmGfBYPxxvo4Rau1oRVMtRxIioyXMkxDzkamUqQNGq5u/s320/20220831_185406.jpg" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPGqWOEi1AyuACZ6RbMLWUaa0e15iyoFJMWsg0Z8sl_vmv0Rp4HQc671quZAvQ9Db_aoYKA7hwDNPInLQtniDEe2Mp-8BumZqH9XwXIz6jlzTTAyqLr_zN_H8gLX30P1E0Ycg6SzNq4Wio-Ola76c4Keg6FT_cDb4z1jDxuIetcYTdAcoG8PG5mmYM/s4096/20220903_153950.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4096" data-original-width="3072" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPGqWOEi1AyuACZ6RbMLWUaa0e15iyoFJMWsg0Z8sl_vmv0Rp4HQc671quZAvQ9Db_aoYKA7hwDNPInLQtniDEe2Mp-8BumZqH9XwXIz6jlzTTAyqLr_zN_H8gLX30P1E0Ycg6SzNq4Wio-Ola76c4Keg6FT_cDb4z1jDxuIetcYTdAcoG8PG5mmYM/s320/20220903_153950.jpg" width="240" /></a></div><br /><div><br /></div>Nickyhttp://www.blogger.com/profile/16316970339424084688noreply@blogger.com0tag:blogger.com,1999:blog-8848123426204206503.post-23855996232812101512021-09-11T13:13:00.003+02:002022-01-03T05:35:00.967+02:00Standing, while we wait...<p> ...not anyone's favourite thing to do, I am sure (?) Waiting. The need to be actively working on overcoming current challenges, whatever those might be, is seldom content with the idea of just waiting. But, ah, what do you do when there's few other options? Usually, my 'waiting' would look more like obsessing, while trying to find that one solution/approach/logic I just must have overlooked, while suffocating in the anxiety/guilt that what I am doing/planning/remedying/coordinating (and and) is just not good enough. It's a control thing. A fear thing. A trust thing. So, when recovery from Sam's Dec 2020 surgery was thrown a bit of a spanner in the works by something as seemingly insignificant as an ingrown toenail, I decided to be more intentional about the waiting this time. So how's that going then? 😁</p><p>Well, it's a little all-over-the-place...much like my speech, feet and ridiculous number of forgotten-about cups of tea. And it's kinda hard work...like all the worthwhile things are, of course 😉. There are days when just 'standing' (ironically) in the moment, allowing all the disappointment and frustration to just soak through that mama-bear armour is actually pretty bearable. Weirdly welcome (I sometimes worry that too many things not going quite according to plan, have made me desensitized to feeling those things). Once those feelings have been processed and reflected upon, reading old journals or blog posts to remember other tricky moments which seemed just as overwhelming at the time but which were then overcome (sometimes in unexpected ways) has been wonderfully cathartic. Well, except for those awkward moments when I had to remind myself (with sufficient amounts of cringe) that the author of those all-too-often whiny posts in between, was in fact me 🙈 Hey, even scrolling back on some FB memories, when cringeworthy blogs and/or emotion-bombarded journals aren't available, can do the trick! Anything that triggers gentle reminders of all which has already been overcome. And how. And then? And then there's scripture, prayer and worship. And hope. And trust. Waiting intentionally. </p><p>Some days.</p><p>But some days surrendering the need to control the waiting (because who even should be wanting to control waiting? Well, me. I do!) just seems impossible. And instead of standing there's more of a somersaulting (clumsily so) in between Googling possible new strategies, doubting and regretting my reaction time to that silly little toenail, certain that if I hadn't left it for so long it might not have had such an impact on Sam's foot. And generally just obsessing about what other unexpected spanners might be hiding in the works as a result. The balance right now between waiting intentionally and somersaulting clumsily is not ideal but I am hoping that as the intentional waiting is mastered (or even semi-mastered) it will get better.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizRfm2YNoNVeHaRmUp_p01GpSbbUzd1y3V6H2ikv2zgmE_n2NrwbE6xqTdMJxW75pDgmyTSOjpkKuWza0atIEIh2_t4AMwEHmZihvkLKBYwf1LZS8rUYF3y3-ixavZgh6XUIDqBz4HRmI/s2048/20210819_095410.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizRfm2YNoNVeHaRmUp_p01GpSbbUzd1y3V6H2ikv2zgmE_n2NrwbE6xqTdMJxW75pDgmyTSOjpkKuWza0atIEIh2_t4AMwEHmZihvkLKBYwf1LZS8rUYF3y3-ixavZgh6XUIDqBz4HRmI/w300-h400/20210819_095410.jpg" width="300" /></a></div><br /><p>Anaesthetic #20something made for a fabulous catch-up nap from far too many leg-spasmy, sinusy-filled, sleep-deprived nights before. Well, for Sam at least!</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwB7NRyG6OcreHNPa_cNR73vhyphenhyphenG5RFJcrV8j0CQTPBlhHARBiOnYwPlTBUqUUPk4hkiAcGnsRmC_tUjm74pApUKOWO6hXd4L1HRbrM2MtKOLIhq3C9BsGOHcjR3M1SyDjJXxK7miImqp0/s2048/20210911_095230.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1536" data-original-width="2048" height="298" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwB7NRyG6OcreHNPa_cNR73vhyphenhyphenG5RFJcrV8j0CQTPBlhHARBiOnYwPlTBUqUUPk4hkiAcGnsRmC_tUjm74pApUKOWO6hXd4L1HRbrM2MtKOLIhq3C9BsGOHcjR3M1SyDjJXxK7miImqp0/w397-h298/20210911_095230.jpg" width="397" /></a></div><p><br /></p><p>The toenail of the hour. Who would have thought something so small could have such a huge impact? That that uniquely-designed foot, newly confident in the support it now had from its 'freshly-arthrodesized' right foot, would go from eagerly wanting to walk (and beautifully so) a few months ago to contorting, in an attempt to self-alleviate the painful toe, into a position more compromised than even before the surgery. But oh, those precious moments when Sam walked into his first few post-op physio sessions, barely holding onto Aunty Nicole, or occasionally (without even realising it) would stand on his own. And how beautifully straight the left foot sat just after surgery, the straightest it had been in twelve years! Those moments are filled with hope of more. Aaaaaand, with full recovery from the surgery having been estimated initially at around 10-12 months, we're still well within our timeframe...spanners and all 😂</p><p>The song below by Lincoln Brewster has made many a 'waiting intentionally' moment more achievable...even when it is sometimes the cause of a painful auditory assault on those unfortunate enough to be within earshot, as it is huffed-and-puffed out by my headphoned, treadmilling self! It's well worth a listen. </p><p><a href="https://youtu.be/NswPPVgMaPE">While I wait</a><br /></p><div class="qLJQNc JAWg1b sthh MUWIfd gHjb0 Du5Hud kpshf" id="sh_tsuid46" jsname="cf0vef" jsslot="" style="background: rgb(226, 238, 255); border-radius: 0px; box-shadow: rgba(32, 33, 36, 0.28) 0px 1px 6px 0px; box-sizing: content-box; color: #3c4043; font-family: Roboto, "Helvetica Neue", Arial, sans-serif; left: 0px; margin: auto; max-height: 999999px; max-width: 768px; position: fixed; right: 0px; top: 0px; transform: translate3d(0px, 0px, 0px); z-index: 110;"><g-tabs class="wRPYSe jtEFhd" data-adapt-width-with-js="false" data-cs="0" data-sb="#0060F0" data-ub="#E2EEFF" data-unselected-text-color="#0060F0" data-ved="2ahUKEwiZ8o34tPbyAhVEZcAKHd8WDScQzNoBKAJ6BAgzEAU" id="_zFw8YZncLsTKgQbfrbS4Ag47" jsaction="EormBc:HFYvKc;gEKQDb:yUtVib;OW9R3e:mhSdVe;keydown:uYT2Vb;focus:h06R8;blur:zjh6rb;rcuQ6b:npT2md" jscontroller="GIYigf" jsdata="oL2lDd;_;BsL1bE" jsshadow="" role="tablist" style="border-bottom: none; color: white; display: block; max-height: 999999px; position: relative; z-index: 0;"><div class="H1HQf zbA8Me WHVvie" jsname="jtW7Nb" style="background-color: white; font-family: Roboto-Medium, HelveticaNeue-Medium, "Helvetica Neue", sans-serif-medium, Arial, sans-serif; font-size: 12px; letter-spacing: 0px; line-height: 12px; max-height: 999999px; overflow: auto hidden;"><div class="crFiYc" jsname="xNyui" style="box-shadow: none; color: #0060f0; max-height: 999999px; padding-left: 16px; position: relative; white-space: nowrap; z-index: 1;"><br /><div class="P0eHqb" style="display: inline-block; max-height: 999999px; min-height: 48px; vertical-align: middle;"></div></div></div></g-tabs></div><div jsslot="" style="background-color: #f1f3f4; color: #3c4043; font-family: Roboto, "Helvetica Neue", Arial, sans-serif; max-height: 999999px; padding-top: 47px;"><div style="max-height: 999999px; padding-top: 8px;"><div class="Kot7x eXEBMb Znsfnf" data-ii="1" data-mcei="cubic-bezier(0.1,1,0.2,1)" data-mcsi="cubic-bezier(0.2,0.6,0.2,1)" data-mcso="cubic-bezier(0.4,0,1,0.8)" data-md="300" data-ved="2ahUKEwiZ8o34tPbyAhVEZcAKHd8WDScQztoBKAN6BAgzEAo" id="" jsaction="EormBc:HFYvKc" jscontroller="SrMpob" jsdata="bBCFHd;_;BsL1bM" style="max-height: 999999px; position: relative;"><div class="GhpATe pttBJc" jsname="ibnC6b" style="max-height: 999999px;"><div class="SoydSe" data-hveid="CDMQEA" data-lopri="1" data-rcov="1" data-ved="2ahUKEwiZ8o34tPbyAhVEZcAKHd8WDScQydoBKAF6BAgzEBA" id="kp-wp-tab-cont-default_tab:kc:/music/recording_cluster:lyrics" jsaction="rcuQ6b:npT2md;u16dZe:h1apBe;lgrA4c:LZRHNc;sQFYsc:J0vfUe;Vituk:iBD8fc;VWEuHf:Hh7WQb" jscontroller="etGP4c" jsdata="gsRMGb;_;BsL1bk" role="tabpanel" style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0); max-height: 999999px; min-height: 914px; overflow: hidden;"><h1 class="Uo8X3b OhScic zsYMMe" style="clip: rect(1px, 1px, 1px, 1px); font-size: small; height: 1px; margin: 0px; max-height: 999999px; overflow: hidden; padding: 0px; position: absolute; user-select: none; white-space: nowrap; width: 1px; z-index: -1000;">Main</h1><div style="max-height: 999999px;"><div jsaction="TenKae:BQOpGc;rcuQ6b:npT2md" jscontroller="m1Ro8b" jsdata="Qbxzod;_;BsL1bo" style="max-height: 999999px;"><div data-hveid="CDMQFA" data-ved="2ahUKEwiZ8o34tPbyAhVEZcAKHd8WDScQkt4BKAB6BAgzEBQ" id="kp-wp-tab-default_tab:kc:/music/recording_cluster:lyrics" jsname="QvTDgf" style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0); max-height: 999999px;"><div class="TzHB6b mnr-c UBoxCb LMRCfc" data-hveid="CDIQAA" data-ved="2ahUKEwiZ8o34tPbyAhVEZcAKHd8WDScQy9oBKAB6BAgyEAA" jsdata="PhoHd;_;BsL1as" style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0); background-color: white; border-radius: 0px; box-shadow: rgb(235, 237, 239) 0px 0px 0px 1px; margin: 1px 0px 8px; max-height: 999999px; overflow: hidden;"><div class="sATSHe" style="max-height: 999999px;"><div style="max-height: 999999px;"><div class="vnLNtd mnr-c TjcfIc eE3xqf B03h3d P6OZi V14nKc ptcLIOszQJu__wholepage-card wp-ms" data-hveid="CDIQAQ" style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0); background-color: transparent; border-radius: 0px; border: none; box-shadow: none; margin: 0px; max-height: 999999px; overflow: hidden;"><div class="UDZeY" style="font-size: 14px; max-height: 999999px;"><div class="XbtRGb qxsd NV5pMe yF5Gqd wDYxhc NFQFxe" data-attrid="kc:/music/recording_cluster:lyrics" data-md="113" lang="en-ZA" style="clear: none; max-height: 999999px;"><div data-hveid="CA4QAA" data-kpqe="1" data-ved="2ahUKEwiZ8o34tPbyAhVEZcAKHd8WDScQsEx6BAgOEAA" style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0); max-height: 999999px;"><div style="max-height: 999999px;"><div class="PZPZlf" data-lyricid="Musixmatch82296937" style="max-height: 999999px;"><div class="xaAUmb" style="line-height: 20px; margin: 8px 16px; max-height: 999999px;"><div jsname="Vinbg" style="max-height: 999999px;"></div><div jsname="WbKHeb" style="max-height: 999999px;"><div class="ujudUb" jsname="U8S5sf" style="margin-bottom: 16px; max-height: 999999px;"><span jsname="YS01Ge" style="max-height: 999999px;">Deep within my heart, I know You've won</span><br style="max-height: 999999px;" /><span jsname="YS01Ge" style="max-height: 999999px;">I know You've overcome</span><br style="max-height: 999999px;" /><span jsname="YS01Ge" style="max-height: 999999px;">And even in the dark, when I'm undone</span><br style="max-height: 999999px;" /><span jsname="YS01Ge" style="max-height: 999999px;">I still believe it</span></div><div class="ujudUb" jsname="U8S5sf" style="margin-bottom: 16px; max-height: 999999px;"><span jsname="YS01Ge" style="max-height: 999999px;">I live by faith, and not by sight</span><br style="max-height: 999999px;" /><span jsname="YS01Ge" style="max-height: 999999px;">Sometimes miracles take time</span></div><div class="ujudUb" jsname="U8S5sf" style="margin-bottom: 16px; max-height: 999999px;"><span jsname="YS01Ge" style="max-height: 999999px;">While I wait, I will worship</span><br style="max-height: 999999px;" /><span jsname="YS01Ge" style="max-height: 999999px;">Lord, I'll worship Your name</span><br style="max-height: 999999px;" /><span jsname="YS01Ge" style="max-height: 999999px;">While I wait, I will trust You</span><br style="max-height: 999999px;" /><span jsname="YS01Ge" style="max-height: 999999px;">Lord, I'll trust You all the same</span></div><div class="ujudUb" jsname="U8S5sf" style="margin-bottom: 16px; max-height: 999999px;"><span jsname="YS01Ge" style="max-height: 999999px;">When I fall apart, You are my strength</span><br style="max-height: 999999px;" /><span jsname="YS01Ge" style="max-height: 999999px;">Help me not forget</span><br style="max-height: 999999px;" /><span jsname="YS01Ge" style="max-height: 999999px;">Seeing every scar, You make me whole</span><br style="max-height: 999999px;" /><span jsname="YS01Ge" style="max-height: 999999px;">You're my healer</span></div><div class="ujudUb" jsname="U8S5sf" style="margin-bottom: 16px; max-height: 999999px;"><span jsname="YS01Ge" style="max-height: 999999px;">I live by faith, and not by sight</span><br style="max-height: 999999px;" /><span jsname="YS01Ge" style="max-height: 999999px;">Sometimes miracles take time</span><br style="max-height: 999999px;" /><span jsname="YS01Ge" style="max-height: 999999px;">I live by faith, and not by sight</span><br style="max-height: 999999px;" /><span jsname="YS01Ge" style="max-height: 999999px;">Sometimes miracles take time</span></div><div class="ujudUb" jsname="U8S5sf" style="margin-bottom: 16px; max-height: 999999px;"><span jsname="YS01Ge" style="max-height: 999999px;">While I wait, I will worship</span><br style="max-height: 999999px;" /><span jsname="YS01Ge" style="max-height: 999999px;">Lord, I'll worship Your name</span><br style="max-height: 999999px;" /><span jsname="YS01Ge" style="max-height: 999999px;">While I wait, I will trust You</span><br style="max-height: 999999px;" /><span jsname="YS01Ge" style="max-height: 999999px;">Lord, I'll trust You all the same</span></div><div class="ujudUb" jsname="U8S5sf" style="margin-bottom: 16px; max-height: 999999px;"><span jsname="YS01Ge" style="max-height: 999999px;">You're faithful every day</span><br style="max-height: 999999px;" /><span jsname="YS01Ge" style="max-height: 999999px;">Your promises remain</span><br style="max-height: 999999px;" /><span jsname="YS01Ge" style="max-height: 999999px;">You're faithful every day</span><br style="max-height: 999999px;" /><span jsname="YS01Ge" style="max-height: 999999px;">Your promises remain</span><br style="max-height: 999999px;" /><span jsname="YS01Ge" style="max-height: 999999px;">You're faithful every day</span><br style="max-height: 999999px;" /><span jsname="YS01Ge" style="max-height: 999999px;">Your promises remain</span><br style="max-height: 999999px;" /><span jsname="YS01Ge" style="max-height: 999999px;">You're faithful every day</span><br style="max-height: 999999px;" /><span jsname="YS01Ge" style="max-height: 999999px;">Your promises remain</span></div><div class="ujudUb" jsname="U8S5sf" style="margin-bottom: 16px; max-height: 999999px;"><span jsname="YS01Ge" style="max-height: 999999px;">Though I don't understand it</span><br style="max-height: 999999px;" /><span jsname="YS01Ge" style="max-height: 999999px;">I will worship with my pain</span><br style="max-height: 999999px;" /><span jsname="YS01Ge" style="max-height: 999999px;">You are God, You are worthy</span><br style="max-height: 999999px;" /><span jsname="YS01Ge" style="max-height: 999999px;">You are with me all the way</span></div><div class="ujudUb WRZytc" jsname="U8S5sf" style="margin-bottom: 0px; max-height: 999999px;"><span jsname="YS01Ge" style="max-height: 999999px;">So while I wait, I will worship</span><br style="max-height: 999999px;" /><span jsname="YS01Ge" style="max-height: 999999px;">Lord, I'll worship Your name</span><br style="max-height: 999999px;" /><span jsname="YS01Ge" style="max-height: 999999px;">Though I don't have all the answers</span><br style="max-height: 999999px;" /><span jsname="YS01Ge" style="max-height: 999999px;">Still I trust You all the same</span></div><div class="ujudUb WRZytc" jsname="U8S5sf" style="margin-bottom: 0px; max-height: 999999px;"><span jsname="YS01Ge" style="max-height: 999999px;"><br /></span></div><div class="ujudUb WRZytc" jsname="U8S5sf" style="margin-bottom: 0px; max-height: 999999px;"><span jsname="YS01Ge" style="max-height: 999999px;"><br /></span></div></div></div></div></div></div></div></div></div></div></div></div></div></div></div></div></div></div></div></div>Nickyhttp://www.blogger.com/profile/16316970339424084688noreply@blogger.com0tag:blogger.com,1999:blog-8848123426204206503.post-39545463617839617662021-02-16T00:04:00.005+02:002021-07-18T21:26:00.090+02:00Hope like a child...the greatest supernatural power!<p>Hope Like a Child</p><p>"We all know people who seem to have everything in life—the right house in the right neighborhood or the right pictures on social media of an uncomplicated dinner out on the town with their healthy, normally-developing kids. But happiness is not relative to our zip code or meals. We are mercurial people. We all have our seasons of growth and love and loss and health and hurt. We crave lasting happiness, and we believe that it can be had here and now, at least on some level. It's why fashion has seasons and jobs have bonuses and ad campaigns work. We think more and new will finally be it, even as we know in our hearts that it's not here where we need to be looking. Nobody’s life is perfect. Nobody’s happiness is without its own pendulum swing.This awareness could be one of your greatest supernatural powers as a parent of a child with special needs. You can learn to hope like a child without trying for a manufactured happiness. You could let it settle on you instead, like a soft refrain, soothing and familiar. You can be happy and hope without tying it to developmental milestones or financial plusses or perfect pictures of effortless outings—it need not be contingent on the here and now. </p><p>So go do it. Go be free. Give up the hierarchical pecking order and go low, on the level of a child, and feel what real hope is like. People will find you odd. They will consider you a contradiction, but really, you are living in line with how God designed the world to work. Be where you are, revel in the everyday, and be proud of how dependent you are on your heavenly Parent." -Jamie Sumner</p><div>We are on day 80-something post surgery. Christmas and New Year have come and gone and, thankfully, so has the 2-3 hours it took every.single.night for Sam to fall asleep, for the first 70 of those 80-something nights. This really has been our toughest recovery so far. And we're probably only about a quarter of the way to full recovery...well, full physical recovery at least...because Sam does like to throw his whole self into these kind of things and right now, despite the most heartfelt smile with which Sam opens his eyes each and every morning, I fear that he is not coping emotionally with the impact this surgery has physiologically had on him.</div><p>Surgery on the morning of 1 Dec 2020 went well. Sam was fairly calm and in good spirits and for both anaesthetic #20 and #21 (being this last one) lay on the table and calmly accepted the mask on his face which is a HUGE improvement from the usual acrobatics he and I used to entertain the theatre staff with when, especially in recent years I a)tried to find a secure way of holding him on my lap but with his face open and non-resistant to the mask and then b) tried to carry the sleeping sag of smurfiness to the operating table without dropping him. Those good spirits did not quite make it back to the ward though and after a couple of hours of trying to kick his legs into the side of the bed, we made a hasty exit from the hospital and headed home, opting out of the night Sam was meant to stay for observation.</p><p><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGl5O99_Z3JjwCKXiCtJDhJ1YPFw9fLGVVM0lnly2O9Z-hbxJowhIpQPSNB5ZhF7Vp_4TZmx6MwRfecn93h6fvJBT6nDXcbtGtuWwcSuuwvC7ilVEGn6K2KqeYZGNL5a4qe2LguKclgwg/s2048/received_409224343639356.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="2048" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGl5O99_Z3JjwCKXiCtJDhJ1YPFw9fLGVVM0lnly2O9Z-hbxJowhIpQPSNB5ZhF7Vp_4TZmx6MwRfecn93h6fvJBT6nDXcbtGtuWwcSuuwvC7ilVEGn6K2KqeYZGNL5a4qe2LguKclgwg/w400-h400/received_409224343639356.jpeg" width="400" /></a></div><div class="separator" style="clear: both; text-align: center;">The calm before the storm 🤭</div><div class="separator" style="clear: both; text-align: center;"><br /></div>They had given Sam a neural block in theatre to help with the pain for the first 48 hours, but I think the sensory challenge of not being able to feel his legs was just too much for him. Nevertheless, once home Sam was a lot more relaxed, although somewhat clingy. 😅 Ooookay! Even more clingy than usual. <div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgigc-MF1Jan-SrIvieh9AWgPffMFEA7waPaLgBz9ka1m0tQd733ECQduCgVvD69GOY9eITQZe5sOA2OMhaOJsE3eoTCwLIXvbPvF8ZfE5a54TDOOSvxldm0GmO-eZ1l4L7MrW7biM8nEg/s2048/IMG_20210131_233345.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1845" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgigc-MF1Jan-SrIvieh9AWgPffMFEA7waPaLgBz9ka1m0tQd733ECQduCgVvD69GOY9eITQZe5sOA2OMhaOJsE3eoTCwLIXvbPvF8ZfE5a54TDOOSvxldm0GmO-eZ1l4L7MrW7biM8nEg/s320/IMG_20210131_233345.jpg" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: justify;"><span style="text-align: left;"> </span><span style="text-align: left;">As Sam has grown steadily to a size not much different than my own, I knew we were going to be navigating a recovery process on a whole new level. Where as with previous surgeries I could just bundle my little Smurf up in my arms and comfort him, often while still going about my normal activities, this healthy 43kg's of Smurfiness doesn't bundle so easily into my arms anymore. Still, when a sore little guy wants to sit on his Momma's lap...sit on her lap he will! </span></div><div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjx-FqPCp4zZaxrfkrXJD_iKdnQFmGElns_mO07zsq19leFI9UEKHcjqStgzmf32Euh5Wv5wgsSGiV7ho_RanJIpw5qdsWAWidgKsUSte_JNrf-d_UsEqVnQqPGpEqp7L9O6JoKv1kSJ6c/s2048/IMG_20210131_233211.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1536" data-original-width="2048" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjx-FqPCp4zZaxrfkrXJD_iKdnQFmGElns_mO07zsq19leFI9UEKHcjqStgzmf32Euh5Wv5wgsSGiV7ho_RanJIpw5qdsWAWidgKsUSte_JNrf-d_UsEqVnQqPGpEqp7L9O6JoKv1kSJ6c/s320/IMG_20210131_233211.jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: justify;">The extra bit of clingyness has been fairly endearing, albeit challenging...especially when I have done a fair bit of one-handed typing or spent many nightime hours making sure I don't relax an arm or leg a little too much and find myself falling from the tiny corner of bed I have managed to secure 😂</div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdBLCgG85gapI0Bmj68NuYRy131ZIpieRxNgrW_i9sqAZdaXW6zA5GlPbGEVSV2tqtZbKPGq6tj4sJ6-dyYHQnmrrXrM_6wcuDyZ1bku-x1rsO4rnhViILSx4-KpK4Qzj7H6Cmd5EbtYs/s2048/IMG_20210131_233019.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1532" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdBLCgG85gapI0Bmj68NuYRy131ZIpieRxNgrW_i9sqAZdaXW6zA5GlPbGEVSV2tqtZbKPGq6tj4sJ6-dyYHQnmrrXrM_6wcuDyZ1bku-x1rsO4rnhViILSx4-KpK4Qzj7H6Cmd5EbtYs/s320/IMG_20210131_233019.jpg" /></a></div><div><br /></div><div><br /></div><div>About a week into the recovery process Sam seemed to be experiencing some pretty high levels of pain and discomfort. We took him in to the surgeon's office on Day 10 post op and discovered that he had a nasty pressure sore on the right heel, which would require me to open up the bandages every second day to dress the wound and then re-splint the leg. To say I was freaked out would be an understatement of 2020 proportions. I have dressed all Sam's other wounds, even the spinal cord one. Oh, but this one! Every second morning I woke up nauseous from the anxiety that would be gripping me within a few hours as I handled that right foot, praying that nothing I did would somehow move the little titanium wedge inserted to fuse the ankle bones. By 10 January 2021 Sam was allowed to have the splints off for about a half hour a day so that he could bath and he even managed a little 'swim' on the really warm days (which I made sure to coincide with dressing-change days because the only thing more stressful than having to handle that little foot, was NOT handling it while it floated around in the water! </div><div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijX4SibneM7B6g9OPuCozpSKNOaiTBgfBedohZmS101oDakQKbDvPsMPKrCvz3xF4JZOC3h1F6chAVLhw_TVetGVzlTHu3Fd5dNOw2SF3VCWS3WaIUgoX1BVMmo2XFuPV7jAcN4hNWqnE/s2048/PicsArt_01-31-11.37.25.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1536" data-original-width="2048" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijX4SibneM7B6g9OPuCozpSKNOaiTBgfBedohZmS101oDakQKbDvPsMPKrCvz3xF4JZOC3h1F6chAVLhw_TVetGVzlTHu3Fd5dNOw2SF3VCWS3WaIUgoX1BVMmo2XFuPV7jAcN4hNWqnE/s320/PicsArt_01-31-11.37.25.jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;">(Such a professional job there on those swim trunks)</div><div class="separator" style="clear: both; text-align: center;"> </div></div></div><div>Keeping Sam occupied has been an interesting task. There have been many, MANY, ice-cream runs to the beach,way too many YouTube videos watched and just way too many Snapchat photos taken. And when we got bored of Snapchatting ourselves, we resorted to Snapchatting toys and even Grampa. The boredom struggle was real! At that point there were just two goal posts to keep in focus, the six week follow up with the orthopaedic surgeon (where I thought we'd be receiving the go-ahead to start weaning off the splints...at least at night) and the, yet unconfirmed, day Sam would be able to start putting some pressure on the ankle. Until then, we snapped, danced, YouTubed, read and entertained away the 14 hours a day Sam spent on the couch as moving him around was just too tricky. </div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjU8HtrkCiNEsx-yxiCwLoxPXF7oNeNCRSABFNW0x0ky7HrS_HNp5Y8eV34jrpSH3tca2JoPqA8ni-WZ6WJzZ9fgyqLJnbYDdPL1sEi_jleYnwim5exU4Q5QBjBcZUokrM1H2cGgpElESg/s480/received_644187193000370.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="480" data-original-width="352" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjU8HtrkCiNEsx-yxiCwLoxPXF7oNeNCRSABFNW0x0ky7HrS_HNp5Y8eV34jrpSH3tca2JoPqA8ni-WZ6WJzZ9fgyqLJnbYDdPL1sEi_jleYnwim5exU4Q5QBjBcZUokrM1H2cGgpElESg/w294-h400/received_644187193000370.jpeg" width="294" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7PVTge6LWjoZvL_X2stRLIXc254HN-SBTY7FzV6TFIt571BS7A7GfBFyDj7Xhyphenhyphen_1mWa2oM-ukyaLbw6JCoUIJEFbh7CiZSipmvgVV0Kl07S0U90loSdS_YwHBgcm-qMQG-W41VnMx_s0/s480/received_413009279808332.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="480" data-original-width="352" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7PVTge6LWjoZvL_X2stRLIXc254HN-SBTY7FzV6TFIt571BS7A7GfBFyDj7Xhyphenhyphen_1mWa2oM-ukyaLbw6JCoUIJEFbh7CiZSipmvgVV0Kl07S0U90loSdS_YwHBgcm-qMQG-W41VnMx_s0/w294-h400/received_413009279808332.jpeg" width="294" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgX0trLa8Oz_OehoWscssX0lfqKl8kNc8XAoktvc4_PnPZ9KIn0yvs6zwCbvBZO2J24cn7xq1eMgR2RFSOZ7O6O6JyAxdk5oEtPkJ1kDukPCZG9Rht0rlGloPwNYADahvSFLC-_pAUOcUY/s2048/received_802120100654322.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1532" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgX0trLa8Oz_OehoWscssX0lfqKl8kNc8XAoktvc4_PnPZ9KIn0yvs6zwCbvBZO2J24cn7xq1eMgR2RFSOZ7O6O6JyAxdk5oEtPkJ1kDukPCZG9Rht0rlGloPwNYADahvSFLC-_pAUOcUY/w299-h400/received_802120100654322.jpeg" width="299" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIjS28N3_qqRHdvuRSO4ycvD7vfN31odOINJQF2eE2SL8DgfZ0AGthdpGnCwEUSgTojjxYCbLWRNjhZj053QtAS_SuhRVA1Z_XoPXY-3iPU9hrNFJGaUANFerphwenTQA1c-pzA43IzgY/s1280/received_239075281258947.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1280" data-original-width="720" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIjS28N3_qqRHdvuRSO4ycvD7vfN31odOINJQF2eE2SL8DgfZ0AGthdpGnCwEUSgTojjxYCbLWRNjhZj053QtAS_SuhRVA1Z_XoPXY-3iPU9hrNFJGaUANFerphwenTQA1c-pzA43IzgY/w225-h400/received_239075281258947.jpeg" width="225" /></a></div><div class="separator" style="clear: both; text-align: center;">🤫🤫🤭🤭</div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dyyGEzxHgHP4N6TOhDhUBkNJn4AGE7tfGvr9L293lcnZkHpSUx0FtowTqRqE6UzYLPLlVslLc2c1R2Cd83efQ' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div><div><br /></div>At long last AFO day came along, being this past Wednesday - 10/02/2021. The fitting of the AFO's went well, with Sam putting up a minimal resistance...quite understandable considering he had, by that stage, become extremely attached to his splints and often asked me to put them on as soon as I had taken them off and the new AFO's are a little firmer in their correction. The excitement was real! Christmas had finally arrived. I even titled my journal entry that morning "AFO DAY"! <div><br /></div><div>And then something went wrong when Grampa and I had to get Sam back into the car after the fitting. Sam's car phobia has reached a whole new level (I find myself saying that a lot lately, about a lot of different things), as car trips have been limited to when Dad can transition him into and out of the car, so trying to put a frantic, flailing not-so-little-anymore dude in the car without the benefit of having him take some weight on his foot in the process proved impossible and whether it was that Sam's right ankle just landed up in a compromised position or whether his resistance forced him to push down onto the foot, which has not only felt no weight on it in over 2 months, but would have had its first weightbearing inflicted rather aggressively on it, as opposed to a more gentle transition into its new position. Either way, Sam got sore, really sore. And by the time we got home he couldn't move and was crying in pain. At that point it was impossible to tell where the pain was coming from as EVERY movement seemed to cause pain. It was easily hands down the most helpless I have felt in almost 12 years 😞</div><div><br /></div><div>I removed the AFO's and tried to gently "feel" which parts of Sam's body seemed to react the most to manipulation and at that point he reacted the most to his back. I gave him a generous dose of Ibuprofen and went to bed beyond disappointed at how the much anticipated "AFO DAY” had turned out. The pain meds definitely was the pain but by the morning Sam was flinching and crying again so, after discussions with Sam's physiotherapist (a profound pillar of strength during this whole ordeal) and Sam's paediatrician, Sam was admitted on Thursday morning. Sam breezed through his 3rd Covid-19 test and a string of x-rays and sonar scans to try identify the source of his pain. There was a brief period where we thought I might have fractured his rib with the ridiculous amount of twisting and fighting Sam had put up the previous day in order to avoid having to go into a car. And, all things now considered, I might well have chosen to rather push him the whole 48km's home in his wheelchair if it meant dodging this latest curveball. Thankfully the cringeworthy flood of tears I gracefully subjected Sam's doctors to when hearing that I was possibly the cause of adding even more pain and discomfort to an already tricky recovery, was all for nothing when the x-ray came back okay. By Friday morning we had narrowed the causes down to lower back (almost exactly where Sam's spinal cord surgery had been), his right hip...and then of course, his right ankle. Sam was of course keeping us on our toes by reacting with discomfort to all three of those areas🤦</div><div><br /></div><div>Further radiology ruled out any spectacular injuries to the back and hip, so right now we seem to be dealing with a hurt ankle/foot on top of the already sore ankle/foot! So AFO Day has officially been postponed. We see the orthopaedic surgeon again on the 22nd, where we will do more x-rays to see how well (?) the ankle bones have fused together and I am just praying that Wednesday's incident has not been severe enough to affect the process. </div><div><br /></div><div>Still, doing splints 24/7 is not helping that pressure sore heal completely, but at least the wound has closed completely and just appears to be a little irritated now. The difference in Sam's foot immediately after surgery compared to now is HUGE. The bruising was there one day and gone the next and had it not been for EPIC FAIL AFO DAY Sam's foot would be boasting a pretty impressive swelling recovery! What the heck, we'll boast anyway 😂</div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhK3evbEdEV_vKduhwD_dOe3CDEJ_GdlDVUtFYCTBtG4r4XeirxCPn4YHMj8A8Da_sbRjEd2XQS3JZYl-AjwBJ9RWexlarqLO1HCFHc5-lsI2_xRwfBSAh1nMRxGaP0mJES779IdGbK3o/s2048/received_719146892127307.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1532" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhK3evbEdEV_vKduhwD_dOe3CDEJ_GdlDVUtFYCTBtG4r4XeirxCPn4YHMj8A8Da_sbRjEd2XQS3JZYl-AjwBJ9RWexlarqLO1HCFHc5-lsI2_xRwfBSAh1nMRxGaP0mJES779IdGbK3o/w299-h400/received_719146892127307.jpeg" width="299" /></a></div>The colour of those toes really gave me a fright, but by the time I had to start dressing the foot just 10 days later it was almost completely gone. Just remarkable! <div class="separator" style="clear: both; text-align: center;"> </div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMWiEaFpemHSya7DzWKLrpffD_Vk_i_hGOT7j_h8fnqwGdZgKR6ML0ahL14SSFHoNghTABkp_KZphKnrEHFcbgguvxewRAPnTfhS6yoHGxoP2DL3yoHe4VIxzhfTgF6dhbiWTfhTHRrEg/s480/received_2883986038512116.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="360" data-original-width="480" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMWiEaFpemHSya7DzWKLrpffD_Vk_i_hGOT7j_h8fnqwGdZgKR6ML0ahL14SSFHoNghTABkp_KZphKnrEHFcbgguvxewRAPnTfhS6yoHGxoP2DL3yoHe4VIxzhfTgF6dhbiWTfhTHRrEg/w400-h300/received_2883986038512116.jpeg" width="400" /></a></div><br /><div><br /></div><div>On a funny note (because there's always an entertaining selection of those with these kind of things) I decided to give Sam's splints a bit of a makeover after we saw the orthopaedic surgeon on 10th January because, had everything gone according to plan, the next time he would see Sam would be after AFO DAY...now I get to revel in yet another bout of cringeworthy Nickyness. In my defence, I had just 30 mins within which to cover the splint with padding and then fabric, by hand, as 30 mins was the length of time Sam was allowed to be splint-free at that point. </div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_6d_3HPNEXQ6ijos4rm8ZwTfXUs-pPfNSKkGKMp9SxN4dJDIL6HYc02KHPQKmsbTzJejXDe9eCkIXzrcwwJUA_p0_TWFMRvkERTA0qBxdVmc1LJWiTdzX7h7DWQsvSYGYT9MF-dlu5hY/s2048/received_1364451820583229.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1532" data-original-width="2048" height="299" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_6d_3HPNEXQ6ijos4rm8ZwTfXUs-pPfNSKkGKMp9SxN4dJDIL6HYc02KHPQKmsbTzJejXDe9eCkIXzrcwwJUA_p0_TWFMRvkERTA0qBxdVmc1LJWiTdzX7h7DWQsvSYGYT9MF-dlu5hY/w400-h299/received_1364451820583229.jpeg" width="400" /></a></div><div class="separator" style="clear: both; text-align: center;">Extreme Makeover : Splint Edition</div><div><br /></div><div>Let's pray that January and February are not setting the tone for the rest of 2021! For now Sam and I are living our best hermit lives, indulging in lots of binging (YouTube for Sam and #bingejesus for me), embracing the art of slimming down (social media for me and apparently any form of constructive stimulation for Sam 🙄) and trying to fuel a (pretty desperate) hope that there is a purpose as to why things are working out the way they are 🤞</div><div><p>📖At that time the disciples came to Jesus and asked, “Who, then, is the greatest in the kingdom of heaven?” He called a little child to him, and placed the child among them. And he said: “Truly I tell you, unless you change and become like little children, you will never enter the kingdom of heaven. Therefore, whoever takes the lowly position of this child is the greatest in the kingdom of heaven.</p><p><i>Matthew 18:1-4 NIV</i></p></div><div><br /></div><div>#samtheconqueror #rubinsteintaybisyndrome #rtswarrior #cerebralpalsy #cpwarrior #bingejesus #arthrodysis #healing #hopelikeachild #hope #morethanconquerors #conqueror</div><div><br /></div><div><br /></div>Nickyhttp://www.blogger.com/profile/16316970339424084688noreply@blogger.com0tag:blogger.com,1999:blog-8848123426204206503.post-40980110120638360642020-11-30T23:08:00.000+02:002021-01-31T23:09:56.518+02:002020 - THE YEAR THAT KEEPS ON GIVING...<p> ...uncertainty, curveballs, heart palpitations, stress migraines, anxiety attacks. You know, all the good stuff. I feel like one could publish a blog post made up entirely of 2020 memes and GIF's 😅 </p><p>And here we were, quietly minding our own business (and all those who know Sam and/or live within a 5km radius of our house have just gone "Wait! What? Quiet??"), breathing a welcome sigh of relief as this year draws to a close that, other than scaling down our already scaled-down social life and having missed so many precious therapies, the pandemic and its host year has not impacted our lives too terribly and we have certainly (almost) come out of 2020 with far less significant hardship than many others. In fact, I daresay, there have been many blessings as a result of the pandemic and its subsequent lockdown...a nudge to relook at the things we place the most value on and (more importantly) take for granted, a (not too) subtle reminder to make the most of opportunities to enjoy friendship and interacting with others when the choice to do so is still within our control, a welcome break from the usual respiratory illnesses Sam is niggled with every few weeks. And the blessing of being 'still' which (as for most special needs parents) didn't mean having a few spare hours every day to just sit and read a book, splash around in some new creativity or whatever other joy might have indulged the soul. Rather, it was more of a slowing down and being more present with the need to juggle the usual day-to-day special needs parenting around therapies/specialist appointments, etc. been forced into pause.</p><p>The rushing around to and from activities did bring with it a hidden benefit though...an element of physical activity for Sam which I completely underestimated. While Sam needs his wheelchair for distances, when we're on our usual trips to therapies and other activities I rather "walk Sam" (support him from behind while he walks) and even if it's just driving somewhere, we still have to walk to and from the car. But then all of that stopped. And the 'still' resulted in some heartbreaking regression for Sam's beautifully-unique feet. A few weeks ago Sam's default mood started swaying heavily towards grumpy. I just couldn't figure out what the cause was. The fact that he was spending more time on his feet again after such a long period of predominantly knee-walking, just didn't occur to me. We had had a consultation with the orthopaed fairly recently (in May) who confirmed that the original plan of action for that little <a href="https://en.m.wikipedia.org/wiki/Rocker_bottom_foot">rocker-bottom foot</a> was still the same - major surgery when Sam is 14/15 to fuse bones together and some equally cringy plans for the collapsed right foot.</p><p>Sam's discomfort became more and more obvious though, to the point that he was flinching with most of his movements. Still, I could not figure out what was wrong...my first thoughts were his back or tummy (which has taken a liking to fecal loading lately 🙄). In hindsight, most of his discomfort was when he had his AFO's on or had just had them taken off and, seeing as he generally had them on for 6-8 hours at a time, that was pretty much most of his day. As Sam's emotional state deteriorated and desperate attempts to ask him where he was sore revealed nothing (does the circulating overwhelming heartache of 'non-verbal' ever go away?) We even planned on increasing/adding anxiety meds in case it was all emotional/psychological. The frustration of not being able to figure it out is second only to the frustration that there were so many clear indications that I missed! Thankfully (and I know I've said this before but I am going to say it again...and probably 100 billion times more before our journey ends) Sam has been truly blessed with THE most amazing pillars of encouragement, support and expertise in the shape of his therapeutic and medical team! Aunty/Princess Nicole became increasingly concerned about the tightness and tenderness of Sam's left foot, to the point where she personally went to the orthopaedic surgeon's rooms to ask if Sam could piggyback off an appointment I had last week for my shoulder...the alternate which would have been to wait the usual 6 or so weeks for an appointment. The orthopaed confirmed Aunty Nicole's suspicions that what I had originally thought was merely 'normal' pressure points from the AFO's, are actually the foot's bones making their way through the side of the foot. In other words, Sam might land up with "holes" in his foot. So, our three-year plan for foot surgery has turned into a seven-day plan. Doing major surgery on the left foot now is still not an option as we need to be sure that Sam has stopped growing first but there are some things that can be done which can hopefully take some pressure off the left foot and get it safely to 14 years 🙂 So tomorrow the orthopaedic surgeon is taking Sam into theatre for neurolysis of the calf muscles on both legs (which will lengthen his calf muscles and minimise the degree at which they are pulling on his feet) and then he is going to go ahead and fuse the ankle joint of the right foot through <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4811096/#:~:text=Subtalar%20arthrodesis%20entails%20surgical%20fusion,as%20well%20as%20other%20disorders." target="_blank">Arthrodesis Subtalar Joint surgery</a> so that the kid has at least one stable foot. </p><p>I am fighting off bouts of anxiety which threaten to smother me a little...not around the procedure itself, but more the recovery. The same feisty warrior spirit which carried Sam through all his other, more serious surgeries, is still the same as always! What isn't the same is the Mom : Sam ratio (although, with the help of lockdown, I have managed to keep it slightly in my favour). So, where in the past I could just carry the lil dude around on a pillow or cuddle him on my lap, post-op TLC might look a little different this time. We are at a point where I cannot pick Sam up unless he is already in a standing position so his not being able to weight-bear is going to bring an interesting twist to the situation. If anyone knows of some exercises which do a super-speedy beefing up of one's core and upper body strength, feel free to flood my phone!! </p><p>Thankfully, I have a feisty warrior spirit of my own I can draw strength, courage and peace from...and it is rooted in He who is faithful, loving and unimaginably generous with His grace. </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhATaTZ0ztcpAZrfRlLs9VoZKZIz4fewwUZUPvhqtWa1FUi5RKtP1TXR9b519VCl5i67NUwBHqa2sEySe2RRtfJ6MD48aTV6aor_z4x4rhmx2RbbOzDUYO77C0LhKAsfEysP8b9Sd1tUas/s480/received_934982980239875.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="352" data-original-width="480" height="294" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhATaTZ0ztcpAZrfRlLs9VoZKZIz4fewwUZUPvhqtWa1FUi5RKtP1TXR9b519VCl5i67NUwBHqa2sEySe2RRtfJ6MD48aTV6aor_z4x4rhmx2RbbOzDUYO77C0LhKAsfEysP8b9Sd1tUas/w400-h294/received_934982980239875.jpeg" width="400" /></a></div><br /><p>This tattoo has a bit of a charming story to it...I had it done a few years ago. It was not what I had originally envisioned for my next tattoo (which are there to whisper the words my soul is often too overwhelmed to hear) but for some reason, at the very last minute, these are the words I chose. And the skin had barely healed when a challenging season filled with uncertainty, failures and hopelessness found me not only regretting my choice, but on very many days unable to even look at the words which seemed to burn into my skin as they taunted me. </p><p> Two years later, after that 'challenging season' seemed like a walk in the park compared to what 2019 had in store, on 11 November 2019 those words burnt into my soul again. But this time the intensity of their weight on my skin...and my life...was welcome. So, I am trusting that our longterm plan for Sam's feet has been curveballed by He whose answer to my prayers for Sam to walk one day, is being presented in a way much more glorifying than the blueprint I had dictated 🙏</p><p>#samtheconqueror #rubinsteintaybisyndrome *RTSwarrior #cerebralpalsy #CPwarrior #isurrender #morethanaconqueror #bingejesus #mustardseedfaith</p>Nickyhttp://www.blogger.com/profile/16316970339424084688noreply@blogger.com0tag:blogger.com,1999:blog-8848123426204206503.post-89262269006356221712020-07-09T15:30:00.003+02:002020-07-09T15:37:50.985+02:00THE MAGIC OF EQUINE THERAPY<div>You know that indescribable feeling of pride and hope and pure joy every time your differently-abled kiddo takes a step forward in a new direction for the first time? Well, I gotta tell you, each week's equinetherapy is like experiencing that feeling all over again for the first time! Today was Sam's third session after a three month period without horses due to Covid-19 and considering how his very first few sessions last year saw us spending an entire session with having only coaxed Sam forward by two steps, I prepared for the worst. But, first day back, and Sam was literally shuddering withexcitement as we made our way towards Whiskey and he pretty much blew me away. You can read about the benefits of horse therapy on paper...even marvel at a video or two...but only when you experience the holistic healing firsthand do you really grasp the MAGIC.</div><div><br /></div><div>#samtheconqueror #rubinsteintaybisyndrome #rtswarrior #cerebralpalsy #cpwarrior #milagroequestria</div><br />
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Nickyhttp://www.blogger.com/profile/16316970339424084688noreply@blogger.com0tag:blogger.com,1999:blog-8848123426204206503.post-48804651058599450872020-07-02T23:56:00.001+02:002020-07-02T23:56:24.434+02:00REMAINING THANKFUL <div>3rd July is #worldrtsday and usually by now I've decided on a few images, slapped a few words together about why awareness days are so important and, flip, some years even had a t-shirt or two printed 👊 This year, with all the Covid-19 uncertainty and additional concerns heaped on top of the 'normal' concerns most special-needs families face, reflecting on a life without Rubinstein-Taybi Syndrome seems to be occupying my mind more than usual...a life without watching you go through endless medical interventions, without watching a beautiful and incredibly receptive little mind struggle with a body which robs you of speech, without watching you innocently forgive attitudes and behaviours you shouldn't even know exist, without the daily (or nightly) mind-numbing fear of what will happen to you when I'm gone. And then I think about the 11yr old boy you would be without RTS...I can almost hear that non-stop, sing-song voice chatting my ear off, imagine a feisty little character asserting himself 100 times a day as his beautiful and incredibly receptive little mind continuously amazes me. Kinda like the non-stop, sing-song voice which fills my every day as you go about your conquering, kinda like the beautiful mind that almost-daily amazes me with the wonders it has stored in there alongside an awareness of your vulnerability, against which you assert that little feisty character. Give or take a surgery or ten and (hopefully) minus a backhand or twenty (Sam's, not mine 😜) you'd be the exact same little guy. Just without the invaluable life lessons...without the unique opportunities to shine...the precious RTS family bonds...and without the funkiest hair any kid could ask for! Do I wish away the heartbreaking challenges and hardships that medically-fragile and differently-abled people have to endure? Every minute of every day! But never will that overshadow the thankfulness and gratitude for the soul(e) this journey has shaped. Happy World RTS Day to our Rubinstein-Taybi Familia 💜</div><div>#samtheconqueror #rtswarrior #cpwarrior #rubinsteintaybisyndrome #worldrtsday</div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0dwIzXuOjoGIMIVZxPHQ1iRX-R6pN3BybKQHhRkDa4A0Oy2CnwPTImAVkl9RpJualDPj-vJfT3syhGmVBhfoSuoRR400MUXsKKyi8CCHdjJN8t5UBBH1ZJsJwFVQbnhjXbMLZ4uq6NFc/s843/FB_IMG_1593726851350.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="843" data-original-width="843" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0dwIzXuOjoGIMIVZxPHQ1iRX-R6pN3BybKQHhRkDa4A0Oy2CnwPTImAVkl9RpJualDPj-vJfT3syhGmVBhfoSuoRR400MUXsKKyi8CCHdjJN8t5UBBH1ZJsJwFVQbnhjXbMLZ4uq6NFc/s320/FB_IMG_1593726851350.jpg" /></a></div><div><br /></div>Nickyhttp://www.blogger.com/profile/16316970339424084688noreply@blogger.com0tag:blogger.com,1999:blog-8848123426204206503.post-38453056312556604702020-05-15T14:59:00.000+02:002020-07-09T15:15:53.258+02:00Happy 11th Birthday Sam! <div style="background-color: white; color: #1c1e21; font-family: Helvetica, Arial, sans-serif; font-size: 14px; margin-bottom: 6px;">
For the first time in six years (and only the second time in eleven years) I decided to throw Sam a birthday party this year. And then Covid-19 happened. Bleh. Luckily, my over-zealous self had bought one or two presents way in advance (and even a Blippi-themed accessory or two) so we could still have a small celebration. For the umpteenth time in the last few months I am reminded of the importance of grasping all opportunities, whatever they may be. The past year has been a <span class="text_exposed_show" style="display: inline; font-family: inherit;">fairly profound year for Sam...he has grown and developed in so many new ways! This does not mean that this year has been any less challenging than others...in fact, I daresay it has been one of the toughest, with Sam's mind and character blossoming at a beautiful pace but forever trapped within the physiological boundaries dictated by his diagnoses, which boundaries result in the most devastating frustrations. Thankfully, focusing on those many 'blossom moments' makes it easier to push through the frustrations. Without a doubt, Sam would not have experienced this last year in quite the same way had it not been for the phenomenal team of ladies guiding him through his intervention therapies...they have shaped his courage, his determination and his newly discovered adventurous side in ways I never thought possible <span class="_5mfr" style="font-family: inherit; margin: 0px 1px;"><span class="_6qdm" style="background-image: url("https://static.xx.fbcdn.net/images/emoji.php/v9/t96/1/16/1f49c.png"); background-repeat: no-repeat; background-size: contain; color: transparent; display: inline-block; font-family: inherit; font-size: 16px; height: 16px; text-shadow: none; vertical-align: text-bottom; width: 16px;">💜</span></span></span></div>
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Although there was one birthday wish sorely missed this year and the fact that Sam's RTS sister <a class="profileLink" data-hovercard-prefer-more-content-show="1" data-hovercard="/ajax/hovercard/group.php?id=1548343985429395&extragetparams=%7B%22fref%22%3A%22mentions%22%7D" href="https://www.facebook.com/groups/1548343985429395/?fref=mentions" style="color: #385898; cursor: pointer; font-family: inherit; text-decoration-line: none;">Ally's journey</a> celebrated their shared birthday in heaven for the first time today, we still cherished the low-key celebration we were blessed to spoil Sam with <span class="_5mfr" style="font-family: inherit; margin: 0px 1px;"><span class="_6qdm" style="background-image: url("https://static.xx.fbcdn.net/images/emoji.php/v9/t6c/1/16/2764.png"); background-repeat: no-repeat; background-size: contain; color: transparent; display: inline-block; font-family: inherit; font-size: 16px; height: 16px; text-shadow: none; vertical-align: text-bottom; width: 16px;">❤️</span></span><br /><a class="_58cn" data-ft="{"type":104,"tn":"*N"}" href="https://www.facebook.com/hashtag/samtheconqueror?__eep__=6&source=feed_text&epa=HASHTAG" style="color: #385898; cursor: pointer; font-family: inherit; text-decoration-line: none;"><span class="_5afx" style="direction: ltr; font-family: inherit; unicode-bidi: isolate;"><span aria-label="hashtag" class="_58cl _5afz" style="color: #365899; font-family: inherit; unicode-bidi: isolate;">#</span><span class="_58cm" style="font-family: inherit;">samtheconqueror</span></span></a> <a class="_58cn" data-ft="{"type":104,"tn":"*N"}" href="https://www.facebook.com/hashtag/rtswarrior?__eep__=6&source=feed_text&epa=HASHTAG" style="color: #385898; cursor: pointer; font-family: inherit; text-decoration-line: none;"><span class="_5afx" style="direction: ltr; font-family: inherit; unicode-bidi: isolate;"><span aria-label="hashtag" class="_58cl _5afz" style="color: #365899; font-family: inherit; unicode-bidi: isolate;">#</span><span class="_58cm" style="font-family: inherit;">rtswarrior</span></span></a> <a class="_58cn" data-ft="{"type":104,"tn":"*N"}" href="https://www.facebook.com/hashtag/cpwarrior?__eep__=6&source=feed_text&epa=HASHTAG" style="color: #385898; cursor: pointer; font-family: inherit; text-decoration-line: none;"><span class="_5afx" style="direction: ltr; font-family: inherit; unicode-bidi: isolate;"><span aria-label="hashtag" class="_58cl _5afz" style="color: #365899; font-family: inherit; unicode-bidi: isolate;">#</span><span class="_58cm" style="font-family: inherit;">cpwarrior</span></span></a> <a class="_58cn" data-ft="{"type":104,"tn":"*N"}" href="https://www.facebook.com/hashtag/rubinsteintaybisyndrome?__eep__=6&source=feed_text&epa=HASHTAG" style="color: #385898; cursor: pointer; font-family: inherit; text-decoration-line: none;"><span class="_5afx" style="direction: ltr; font-family: inherit; unicode-bidi: isolate;"><span aria-label="hashtag" class="_58cl _5afz" style="color: #365899; font-family: inherit; unicode-bidi: isolate;">#</span><span class="_58cm" style="font-family: inherit;">rubinsteintaybisyndrome</span></span></a> <span class="_5afx" style="color: #385898; cursor: pointer; direction: ltr; font-family: inherit; text-decoration-line: none; unicode-bidi: isolate;"><a class="_58cn" data-ft="{"type":104,"tn":"*N"}" href="https://www.facebook.com/hashtag/cerebralpalsywarrior?__eep__=6&source=feed_text&epa=HASHTAG" style="color: #385898; cursor: pointer; font-family: inherit; text-decoration-line: none;"><span aria-label="hashtag" class="_58cl _5afz" style="color: #365899; font-family: inherit; unicode-bidi: isolate;">#</span><span class="_58cm" style="font-family: inherit;">cerebralpalsywarrior</span></a></span></div>
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Nickyhttp://www.blogger.com/profile/16316970339424084688noreply@blogger.com0tag:blogger.com,1999:blog-8848123426204206503.post-37770095700937221862020-02-01T13:42:00.000+02:002020-02-11T13:51:28.572+02:00Beware of the Afternoon Nap!<br />
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Can you tell someone's happy to be home?<br />
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The 'welcome home' surprises did have a little part to play in that initially, but Sam didn't need much more motivation as he busied himself with restoring the house to its usual state of trainwreck as he got down to the business of playing (and I wouldn't change the absolute joy of THAT for anything, especially after he has spent the better part of the last 7 days hunched over in pain). That tambourine is no random gift either. Sam loves the 'flying tambourine' game during music therapy, so much so that he has been trying to mimic it at home with his teeny tiny toy tambourine (although it is nowhere near as entertaining without <span style="background-color: #d8dfea;">Karyn Stuart-Röhm</span> 's accompanying charm).<br />
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Thankful to have the lil flappy dude feeling better, although the afternoon naps hint at him not being 100% himself yet (I'll take the 99% with a thank you very much though 🙏🏻💜) </div>
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<span style="background-color: #d8dfea;">#samtheconqueror</span> <span style="background-color: #d8dfea;"><span style="background-color: #d8dfea;">#rtswarrior</span></span> <span style="background-color: #d8dfea;">#cpwarrior</span> <span style="background-color: #d8dfea;"><span style="background-color: #d8dfea;">#rubinsteintaybisyndrome</span></span> <span style="background-color: #d8dfea;">#cerebralpalsy</span> <span style="background-color: #d8dfea;">#musictherapy</span></div>
<br />Nickyhttp://www.blogger.com/profile/16316970339424084688noreply@blogger.com0tag:blogger.com,1999:blog-8848123426204206503.post-42068491537358576622020-01-30T20:34:00.000+02:002020-02-11T13:51:54.868+02:00You can't always trust your gut!<br />
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This boy's gut has made for a few really crappy weeks...pardon the pun 😁 Three hospital admissions, coupla kg's down from not being able to eat and keeping everyone on their toes with going from one extreme to the next without any obvious reasons popping up on bloods or the very invasive procedures we resorted to last Thursday. </div>
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Sam has been pretty much floored by the Salmonella infection which saw him landing up in hospital on the 27th January...just days after having a number of procedures on the 23rd (which procedures still make me cringe at the thought of them) with a suspicion that the infection was picked up in theatre as Sam has not eaten in weeks. </div>
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From Sam's point of view though, the most traumatic part of it all so far has been me trying to remove the plaster from his epidural site... that little bit of plaster lifted up on the left side of the pic - that took like half an hour 😅 The boy's got a healthy covering of hair I tell ya! 🙈<br />
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At least we managed some <span style="background-color: #d8dfea;">#souletherapy</span> between admissions with a walk on the promenade on Saturday, even though we couldn't sway Sam's ghosted appetite with the usual Nutella pancake 🤪🍫 When afternoon naps are the order of the day, you know the flappy dude's not himself 😴</div>
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<span style="background-color: #d8dfea;">#samtheconqueror</span> <span style="background-color: #d8dfea;"><span style="background-color: #d8dfea;">#rtswarrior</span></span> <span style="background-color: #d8dfea;"><span style="background-color: #d8dfea;">#cpwarrior</span></span> <span style="background-color: #d8dfea;">#rubinsteintaybisyndrome</span> <span style="background-color: #d8dfea;">#cerebralpalsy</span> <span style="background-color: #d8dfea;">#souletherapy</span><br />
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<br />Nickyhttp://www.blogger.com/profile/16316970339424084688noreply@blogger.com0tag:blogger.com,1999:blog-8848123426204206503.post-39968449251647626462020-01-22T12:15:00.001+02:002022-07-13T01:12:39.305+02:00Special Needs Parenting : a "NO FREE-WHEELING" Zone<br>
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<span style="font-size: 1,00em;">As I have watched the beautiful </span><span style="font-size: 1,00em;">first-day-of-school</span><span style="font-size: 1,00em;"> photos flooding my newsfeed of my South African FB friends, I have been reminded again of how quickly and significantly our goals and priorities can change. Eighteen months ago having Sam in school was quite high on my list of priorities, one year ago having Sam (relatively) happy and able to thrive emotionally and developmentally in whichever environment necessary became quite high on my list of priorities and saw us returning to homeschooling. This year, right now, having Sam just make it through one day of eating (and, well, pooping) as per his normal would be pretty awesome. Now wouldn't that make an entertaining </span><span style="font-size: 1,00em;">'first</span><span style="font-size: 1,00em;"> </span><span style="font-size: 1,00em;">day'</span><span style="font-size: 1,00em;"> photo??? </span><br>
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<span style="font-size: 1,00em;">"The exhaustion of special needs parents" How many times a day I see articles like this whizzing by on my newsfeed. Whizzing because a) my FB is often being glanced at from the side as Sam scrolls to find pictures and videos of friends' kiddos, strangers' kiddos...any kids really and b) because I don't need an article to remind me or my rather small circle that I am exhausted...my (average) eight-hour reply time on messages, repeated "I'd love to, but....." RSVP's on invitations involving anything close to me-time or puffy, saggy, heavily make-upped eyes are evidence enough!! No bashing from my side intended for the special needs parents sharing those posts 💜 Sometimes you're too exhausted to put your emotions into words yourself, so being able to simply share someone else's beautifully penned emotions so similar to your own, is a blessing. I just occasionally feel even more exhausted after reading these articles because a) I'm now feeling saddened and a little helpless about the writer's (and all those who have shared the posts) struggles and b) there will undoubtedly be something in there that I have forgotten to be anxious about!! Oh and, no, my eight-hour reply time on messages is not referring to the night time spent asleep...because then I'd be replying within an hour or two. 😅</span><br>
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<span style="font-size: 1,00em;">The thing is that over and above the physical exhaustion, the emotional exhaustion and the just being exhausted to your very core (And that feels like an actual thing, not just something you say for dramatic effect. It's like the place that keeps your body functioning when your brain keeps sending messages that your neck and back can't take anymore lifting and carrying of your 40kg flappy extension, the place from which your emotions continue to flow so that, even though you have been exposed to the most unimaginable fears and disappointments, you continue to FEEL and don't become desensitized...and the place from which your spirit's butt gets kicked everytime it threatens to start shedding the essence of who you are. Well, at least that's what my core feels like 🤷😅) Anyway, where were we...the thing that makes this exhaustion next level is that there is no defined end sight to keep focused on and because sometimes the end sight on its own is cause for anxiety. There is just no free-wheeling on this path. No stretch of road where you can just loosen your grip for a moment and take a second to breathe because in the blink of a heavily make-upped eye you can find yourself needing to navigate over an unexpected bump or swerve to avoid being slammed to the ground when you hit an even more unexpected pothole! </span></div>
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So you're constantly redefining goals and your ways of achieving them and this is not only your goals for next year or next month but sometimes for next week or even the next day! The only thing that keeps you from being completely overwhelmed is that, despite never enjoying that free-wheel zone, you've mastered the art of stealing a glimpse of the beautiful scenery with one eye while keeping the other on the lookout for that bump and being eager to celebrate each successfully avoided pothole as excitedly (and thankfully) as the first one.</div>
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<span style="font-size: 1,00em;">While making the decision to change our longterm goal and revert back to homeschooling was a tough one, the change has brought with it many MANY glimpses of beautiful scenery...one of these being able to put Sam back into his intervention therapies fulltime which in turn has (with the support and guidance of a truly amazing team of ladies) uncovered some pretty awesome (and unexpected) aspects of Sam's development, worthy of a whole new post of its own! And our short term goal starts with some scopes and biopsies tomorrow to determine why the previously, always-starving kid has not been able to eat for the last six weeks. I won't lie, having 4kg's less of anxious flappiness to maneuver into the car has not been all bad, but watching Sam asking for his favourite foods and then just not being able to eat for any obvious reason has been pretty distressing, especially when you can hear his tummy grumbling. Thank goodness for Pediasure 🙏 His whole GI tract in general seems to be unsettled, although x-rays and scans have confirmed that there has been no anatomical changes 🤷 On the beautiful scenery side, Sam's six week fast should make this the easiest nil per mouth wait ever (?) from 8pm this evening until 2pm tomorrow 💪</span>I Ishall be sure to flood my newsfeed with our own first-day-back-to-eating pics!</div>
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<span style="font-size: 1,00em;">Oh...on another beautiful scenery side...I have discovered that black and white photos are great for camouflaging heavily sleep-deprived eyes! </span></div>
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<br>Nickyhttp://www.blogger.com/profile/16316970339424084688noreply@blogger.com0tag:blogger.com,1999:blog-8848123426204206503.post-86154378200372693892019-11-20T07:10:00.002+02:002019-11-21T11:01:31.615+02:00In Loving Memory of ChrisnaI have started this post so very many times over the last 5 months. And then restarted it. And restarted it again. But, even though words have always seemed to find me quite easily...well, the written ones at least (and usually at bizarre hours like 02:00 in the morning), my words have failed me miserably lately as I try to find ones which could possibly do justice to this post. How does one recap the many moments...the joys, celebrations, challenges, fears, victories, despair, hope... which have filled our lives over the last (almost) two years? Well, you have to start somewhere...and starting with the life-shattering heartache which has made this blog so vitally important again, would be a good place to start.<br />
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Writing has always been an essential part of my processing of, well, everything. Since I can remember, I have always kept journals (often to my detriment as the essential need to protect my journals was seldom as important to me as the essential need to write them 🙈). More than just a way to record memories (which memories were in any case often rendered indecipherable, depending on the mood which had determined my handwriting), writing helped me streamline the whirlwind of thoughts and emotions constantly bombarding my mind. And then the digital era arrived. Yay for actually being able to understand the outcome of the processing I had needed to work through said emotional whirlwind bombardment! And although it was, sadly, nowhere near as therapeutic as huffing through a bunch of pages with a grip that left your words indented 30 pages down or as rewarding as the whimsical twists at the end of a "j" or "y" which left a sweet recording that much warmer and fuzzier, it was so much quicker (and clearer) to transfer your thoughts across a keyboard/screen. Well, after you had found the time to put the laptop on, wait for it to start up, sign into the blog, read through your previous post/s to make sure you weren't repeating yourself (as someone who has to occasionally check her calorie counter to remind herself what she had for breakfast so that she doesn't have the same for lunch, this was an important part of the process) and then, finally, start typing. See. Much quicker (?) And then along came Facebook and Insta and it was even quicker and more convenient to share a moment. Sure, you have to 'crop' some of those thoughts a little, like the unnecessary/unwanted parts of a photo. But who wants to read such lengthy Facebook posts anyway right? Plus there are filters people! Oh, the filters! Well, you know who would want to read all those lengthy posts of the last 22 months now? Me.<br />
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Our blended family came together in 2007 with no fewer challenges than anyone else's as we navigated each of our individual personalities through a maze of discoveries as we sought the common ground upon which we would rest the foundation of our unique family dynamic. In fact, adding a Lil Smurfy Dude into that blend just 22 months later, we probably had a few more challenges than many blended families. (Did you notice that "22" again? Yeah, me too. Now, if I still had a writing journal, I would have quickly scribbled 10 pages about the possible reasons and potential purposes that the number 22 might have had. Then I would have scribbled a few more pages about the significance of it taking "10" pages to write about the "22", so now there'd be an additional element to factor in. Aaaaaaaaand, now you know why my handwritten journal became too time-consuming).<br />
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On 17 June 2019 we lost a beautiful, cherished part of our blended family when Sam's sister, Chrisna, tragically passed away in a car accident, just a month before her crown birthday on 17 July. Desperate to hold on to memories and moments with her, we have spent many hours looking through old photos, revisiting her social media pages just to hear her voice in the occasional shared video, savouring every forgotten/overlooked picture newly discovered. There never seems to be quite enough to so completely saturate your mind that you miss her just a little less. Then I remembered my journals and spent many days reading through them, hoping for forgotten memories. But, as I stopped writing in them many many years ago, having (then) moved over to this blog which, as a public platform, made me cautious about what I shared, it has been pretty devastating to realise that, other than an occasional, briefly-captioned picture on social media, no longer do I have a place to go where emotions and sentiments can be revisited in a way which words alone have the power to indulge...words which would have recorded what a beautiful, caring, inspiring young woman Chrisna had blossomed into. How I looked forward to her time with us, how I loved our catch-ups about her friends and romantic interests, how entertaining it was to walk through local shopping malls with her when literally (and this is no exaggeration) every 3-4 minutes she was greeted (usually with hugs) by peers from her school, her church, her social circles, her many sport activities and often even rival sport teams as people went out of their way to connect with her, how amusing it was to walk along the promenade and notice how many (unnoticed) admiring glances she got or how an after-dinner stroll through the neighborhood on Christmas eve last year found us acquiring the company of an unbeknown to us young man who strategically made small talk with our whole family and then subtly gravitated towards the centre of his actual attention, Chrisna. Nowhere have we recorded how exciting it was to listen to her carefully-considered plans for her future, from how she planned on booking her learner's licence test on the day she turned 17 to the Degree she planned on studying for and her hopes and ambitions for where life would take her once she'd achieved it. And she feared no barriers or limitations, so achieve it she would have. Words which would have shared how grateful we are to have witnessed and been blessed by the grace with which she embraced everyone and how the knowledge that that grace brought with it a comfort in the knowledge that it would help guide her and her step-siblings towards a care plan for Sam should I, in fact, NOT live to my planned ripe old age of 105.<br />
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Those are cherished moments and sentiments which we can never get back, but which didn't all make it onto Facebook or Instagram. So I am leaving them here. Where I can find them always. And as a reminder that the abundance of unspoken words which we too often fail to share because we are too tired/afraid/proud/self-conscious/cautious may never have the opportunity to find their power.<br />
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❤️ How we miss her ❤️<br />
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A minute's worth of life...a trivial thought for some.<br />
What difference would one minute make when your time with us is done!<br />
But if that minute could share an overflow of the words within our hearts,<br />
We'd be careful not to waste a second and would know just where to start.</div>
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Just one minute to say we love you, more than you'll ever know.<br />
A love that's filled with admiration for the grace with which you'd glow.<br />
A minute to say you amazed us with the woman you became,<br />
With the adoration and respect with which so many voiced your name.<br />
A minute to tell you proudly of the countless lives that you have touched,<br />
A truth your humble heart would quickly dismiss as not that much.</div>
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A minute to say we miss you, more and more with each new day.<br />
A yearning freshly fuelled with each forgotten photo that comes our way.<br />
A minute to listen closely as you'd tell us not to fret,<br />
Your unwavering zest for life just one more thing we can't forget. </div>
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A minute for one last chance to hug you tight and know you're near.<br />
To have you sing just one more time <br />
"Cause I don't care when I'm with my baby, all the bad things disappear"<br />
A minute to share a promise that your life will remain our inspiration,<br />
And that we will use each minute that we DO have with love-filled purpose and intention.<br />
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<br />Nickyhttp://www.blogger.com/profile/16316970339424084688noreply@blogger.com1tag:blogger.com,1999:blog-8848123426204206503.post-60417383391697078692018-01-06T23:46:00.001+02:002018-01-07T00:19:38.781+02:00Conquering ain't for the fainthearted.......which is why I leave that up to Sam while I stumble clumsily along wondering which year it is! 2018??? I'm still easing myself into 2017!<br />
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"Stumbling" could well describe the manner through which we've approached the past few months...if stumbling could be an appropriate way to get through a four-month-long-relentless-battle-with-ear-problems-with-an-ear-polyp-for-extra-pizzazz-and-a-touch-of-precocious-puberty-sprinkled-with-funky-mouth-issues kind of phase?<br />
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Let's go alphabetically (hopefully my literacy skills do not fail me as atrociously as my numerical skills) :<br />
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Ears - Sam developed a rather nasty ear infection (in his 'good' ear, sadly) in August. The subsequent treatment thereof was not terribly effective and, three months later, resulted in a polyp and a still lingering infection. Said polyp had to be removed urgently right then and there in an ENT's room (without any sedation or even pain meds) as we only found out about the polyp at that time and leaving it untreated for an additional couple of days (it was a Friday) in order to arrange a theatre date, was not an option. Sam was extremely traumatised by the procedure :(<br />
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Funky Mouth Issues - Sam has significant dental overcrowding on his right side and as a result, has an adult tooth which has been trying to drop down for about six or seven months but is being blocked by three other teeth. There seems to be no consensus between the medical role players involved on how to deal with this and so Sam now has an adult tooth which is wanting to bulge randomly through the side of his gum and is causing him immense discomfort :(<br />
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Precocious Puberty - after Sam sprouted some rather adult looking hair earlier this year, an MRI revealed that Sam's M.I.A. little testis, which we thought had given up its ghost, is quite snuggly tucked away in the inguinal canal and happily testis-ing away. The immediate concern was that of the high risk of tumours with undescended testes, which would explain why Sam's body was in puberty a year or five too soon! Earlier this year??? #<i>eyeroll</i> Earlier last year! The MRI was revisited and it was concluded that (thankfully) this little testis is tumour-free!With there being several possible causes behind Sam having <b><i>"testosterone levels of an adult male"</i></b> (as described by the endocrinologist), the next step was to confirm that Sam is indeed in puberty and then to pinpoint the reason. A bone age test confirmed the Precocious Puberty and it was concluded that it is likely a complication of the type of Cerebral Palsy Sam has. So what now? While (for several reasons) it would be preferable to have our M.I.A. testis safely relocated to Casa del Scrotum, the fact that it is sitting extremely high up in the canal and would need to bypass a significant amount of scar tissue (from the previous surgery) poses a great risk of arriving home damaged! With me having already demanded that the other testis be ousted several years ago #<i>me.winning.always</i>. any damage to our last survivor would not be great. So we shall leave him be for now and do aggressive monitoring for tumours while PP wreaks havoc on Sam's system...both physically and emotionally. The physical changes sure are something to get used to...but the aggression levels are just something else! That, combined with all the other issues going on and having to deal with it all without having the luxury of verbalising your discomfort and extreme emotions, has made for one (often) grumpy little guy. I have seriously considered soundproofing at least one room in the house for fear of having the Police and/or Child Welfare show up one day to find out what all the hysterical screaming is about! And it ain't changing soon folks, as we are going to let the puberty run its course for Sam's longterm benefit.<br />
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But, as always, despite there having been a few bumps along the road lately...there have been some amazing moments too. Sam has been taking more and more independent steps and has on occasion managed a good five or six metres on his own! You do have to sort of trick him into thinking you're supporting him, but as soon as his confidence starts overpowering his fear, there'll be no stopping him I'm sure. Aaaaaaaand...Sam has discovered the joy of PRESENTS! So much so that I had to hide any unopened gifts this Christmas which were not for him. His birthday this year is going to be an absolute treat. Once all our 'nigglies' have been sorted out, 2017 is going to be a great year!!<br />
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<span style="font-size: xx-small;">Just kidding!</span></div>
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<br />Nickyhttp://www.blogger.com/profile/16316970339424084688noreply@blogger.com0tag:blogger.com,1999:blog-8848123426204206503.post-10204495001396749662017-10-04T04:03:00.001+02:002022-06-13T03:13:50.699+02:00You know that point you get to......where you know you've FINALLY mastered this special needs parenting thing?<br />
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Nope? Well, me neither! In fact, I think I'm moving further and further AWAY from THAT point...like it occasionally flits a little closer to taunt me and I shakily breathe a 'we've-got-this' sigh of relief and then next thing it hightails away from me and I'm left reeling in a whirlwind aftermath of W.T.F(lip)'s!<br />
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It's been a rather busy 3 months...magazine articles, 1 year schooliversary, meds fail, testis hunt, die-hard viral URTI's, flourishing receptive communication and and...<br />
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Sam's story is featured this month in a very popular local magazine, although the shoot for the article was done in July already.<br />
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The actual shoot was loads of fun, complete with hair and make-up and Sam, who just loves the camera, did really well. The only downside of the morning was Sam's ever-increasing fear of being in a car, as we travelled 45mins to the venue...and then back again. It's something you really have to see to completely comprehend but because holding my phone while Sam is frantically grasping at my neck/hair/face/clothes/arms as if I am about to ease him over the edge of Nanga Parbat's Rupal Face as opposed to over the annoying arm of his booster seat, catching it on video has proven a little tricky. So you will just have to take my word that the lil flappy dude does not do great with cars...eight years on, sometimes up to six or even eight into's and out of's a day and yet each time I open that car door, panic hits him like it's the very first time.<br />
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It's this very irrational anxiety which led us to probably one of our worst medication epic fails. With Sam's anxiety levels really affecting his quality of life and with him having been on his current anxiety meds since he was 2 years old, we decided to replace his <a href="https://en.m.wikipedia.org/wiki/Fluvoxamine" target="_blank">Faverin</a> with <a href="https://en.m.wikipedia.org/wiki/Sertraline" target="_blank">Serdep</a> which, on paper, looked like a better fit (Sam's absent seizures have also increased and the risk of seizures is statistically higher with Faverin), plus the longterm use of the Faverin might have made Sam's system too accustomed to the Fluvoxamine so a change in med seemed like a good idea...until we did it. Said system was not as impressed with the change as we'd hoped and Sam's days became just one emotional turmoil after the other. At the same time, an EEG confirmed that we needed to increase Sam's epilepsy meds AND, for good measure, Sam suddenly sprouted some very adult-looking hair in his nether region indicating that a certain little testis we had presumed lost (and inactive) to the flappy dude's innards was, in fact, not all that inactive after all #<i>gasp</i>!!!<br />
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I make light of the situation, but I can assure you that almost every morning for two months I stood clinging to the gate of Sam's school in very-near despair, listening to the amazing team of ladies at <a href="http://edu-play.co.za/" target="_blank">Edu-Play Early Learning Centre</a> reassure me that they would cope with Sam's completely over-the-top emotional state and accommodate what behaviours they needed to at that time...and those reassurances and encouragements were, without a doubt, both mine and Sam's saving grace!<br />
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I say "were" because Sam is once again back to his version of a "happy place" and our days are no longer filled with unpredictable bouts of emotion, aggression and insanely-pitched screeching. We switched Sam back to the Faverin after 2 weeks of giving the Serdep fair chance and Sam's system has also now adjusted to the increased dose of Epilum. That darn little testis though...that's a whole other issue (and venting-full post on it's own), but in short, we have to try bring it down again which is not great news as, above spinal cord surgery and thumb reconstruction surgery, Sam's testicle surgeries (this will be the third) always seem to knock him the most. The fact that the little bugger has been hiding out in the inguinal canal for a good 4 or 5 years already means that we aren't doing any more considerable damage by waiting till the beginning of December to do the surgery so that a) Sam has at least had a couple of months to enjoy some (relative) calm before we slap him with another round of trauma and b) he gets to enjoy his Christmas concert and the festivities of the end of the school year.<br />
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Thankfully, through all the issues</div>
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over the past few months, Sam's</div>
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love for school has not been</div>
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affected. The fact that some of his</div>
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favourite people are there sure</div>
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helps. It's crazy to believe that on</div>
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18 July he'd been at Edu-Play for </div>
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a full year already!</div>
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To close off, there has been a sudden flourish of receptive communication on Sam's part. His receptive language has always been good and we've even noticed him picking up on some Afrikaans words...but more than once now he has reacted to something that was said in a conversation in his presence, but not directed at him. It's been really quite amusing, with a flappy conqueror's twist of course, eg...a few nights ago Sam whacked his head a startling shot on the wooden headboard. Sam has an incredibly high pain tolerance, but still feels the initial pain completely, in other words, he feels the pain...reacts, but then has so (almost sadly) become accustomed to pain that he will continue functioning despite (I believe this is very much an RTS thing). Anyway, he knocked his head but instead of crying momentarily and then moving on as usual, he sobbed for over half-an-hour afterwards and was extremely heartsore. My neurotic, mama-brain went into overdrive of course and imagined all sorts of devastating consequences which might have made this head knocking different to the hundred others #<i>eyeroll</i>. About two days later Sam was rubbing his left eye and I mentioned to his dad (while Sam seemed preoccupied with his iPad) that his eye seemed to have been troubling him ever since he'd knocked his head. Sam (who was on the bed again at the time) calmly put the iPad down and, albeit it very cautiously and in super slow mode, replayed him falling and knocking his head. It was the cutest thing ever because, of course, it came complete with fake tears and the need for more of the same hugs and cuddles as well 💜<br />
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<br />Nickyhttp://www.blogger.com/profile/16316970339424084688noreply@blogger.com0tag:blogger.com,1999:blog-8848123426204206503.post-14067255773581850272017-06-18T23:00:00.001+02:002017-06-19T21:13:02.911+02:00As the parent of a differently-abled child......how hard should you push? How sure can you be that you're allowing enough consideration for health, physiological and emotional wellbeing. How sure can you be that you're not allowing <i>too much</i> consideration? And on which one of those would you most prefer to err?<br />
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A few years ago (and by "<i>few</i>" I mean ten or so...and that's where I'm leaving it), I travelled a fair distance to work each morning making my way into the CBD via either bus or train. Because I cannot pinpoint the exact year, I cannot remember exactly which mode of transport is relevant to this story but as I am leaning towards 1996/1997 (yes, okay...so a little more than ten years maybe) I am inclined to believe it is the bus. Travelling what seemed to be the same route a few times, was a young man who appeared to be roughly the same age and whose constant companion was his remarkable guide dog. So many times I watched the intriguing pair navigate the busy streets along Cape Town's Foreshore and brave the city's public transport (which was a courageous enough task for even the sighted) and could not help but stare intensely at the young man, hoping for the slightest sign of sight because my heart broke a little each time I saw him, at the thought of his having to encounter such formidable challenges each and every day...alone. While my memory is a little sketchy about the minor details (like whether we were travelling by bus or train, what with them being so similar and all) after all my "<i>intense staring</i>", it would be fair to say that I'd have recognised his face anywhere!<br />
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A week ago our NPO held a fundraising event and the guest speaker was a gentleman by the name of <a href="http://heinwagner.com/" target="_blank">Hein Wagner - A blind man with vision</a>. Hein, who now lives predominantly in Sweden with his lovely wife and daughter, hails from South Africa and had travelled to his country of birth alone to speak at our function. I had read his biography a hundred times by then, had copied it into several media documents...but had never thought to look at any pictures. Hein's lifetime accomplishments read like something out of an incredible feel-good movie. Few sighted men could achieve all that he has, so to say I was excited and very nearly intimidated to meet him would be fair. Hein entered the venue on the arm of a colleague and my heart stopped. Yes it had been about...ahem...ten years (give or take another ten) but that face was all too familiar. His presentation was profound! Amongst other things, Hein spoke about how grateful he was to his parents for insisting he learn to become independent, placing him in a boarding school for visually-impaired students 100km away at just five years old! While I have no plans to ship Sam off to boarding school (although this is a traditional punishment I have threatened all of my children with), Hein's message inspired me to rethink the way in which I approach Sam's challenges and, in turn, the attitude I instil within him to approach those challenges.<br />
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Having done several rounds with many of the obstacles Sam struggles with the most already, I thought it was worthwhile revisiting the more fundamental tasks which, although perhaps appearing "basic" to many, would make a significant difference to our daily lives. So first up was independent feeding - with the complex puzzle which makes up the lil flappy dude's brain, one of his trickiest challenges is fine and gross motor planning leaving eating independently as something we have not yet been able to master. This weekend seemed as good a time as any to try again...<br />
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Sam's movements lately seem to be hindered by an increasing amount of tremors and shakiness, but after a few more tries he really seemed to get the hang of manipulating the spoon which also seemed to ease the flow of his movements a little. A change in utensils (I foresee mountains of dirty dishes in my future while we figure this out) and Sam was not only more comfortable with the process, but was even scooping up stray food from his chin!<br />
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We will of course spend some time on this new goal before we move on to something else (and right now I can't even imagine what that something else would be) but, as with any form of progress for a child with specific needs, the joy of seeing how impressed Sam was with himself and the encouragement of what a little perseverance and motivation can do, was pretty darn awesome!<br />
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And so...did I ever find out if Hein is in fact the young man who I witnessed so many years ago? I'll never know!! My lacking self-confidence and social awkwardness prevented me from asking him outright, despite him being very friendly and approachable. I have considered indulging in some Facebook creeping (because once you've been an intense starer there's little else more inappropriate) to see if I might come across a photo of him at around twenty years of age but the thought of finding him with a short, trendy hairstyle then like he wears now as opposed to the long, almost shoulder-length bob I remember the young man having then, would be strangely disappointing. So, for now, I fancy the idea that Hein Wagner is in fact the blind, young man upon whom my senseless sorrow was wasted as while I thought he was out feeling overwhelmed and vulnerable, he was in fact out conquering and overcoming 💜<br />
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<br />Nickyhttp://www.blogger.com/profile/16316970339424084688noreply@blogger.com0tag:blogger.com,1999:blog-8848123426204206503.post-64994213083479224672017-06-07T21:00:00.001+02:002017-06-07T21:08:40.702+02:00Does he know......that he is different? I've wondered about this often before but could never really come to a solid conclusion and, honestly, wasn't sure it mattered much. About a month ago we sat in the ENT's office...I say "sat" but mean "flapped, whinged and occasionally shrieked"...with Sam becoming increasingly agitated as our wait ticked past an hour. The younger, more mobile patients (all 'typical') provided Sam with a momentary distraction as they played on the mat, hopped around, etc. but once that moment had gone (all 5 seconds of it) Sam resorted to taking occasional swipes at them, especially whenever one sprightly young kiddo entered his personal space...which personal space, with about 4x4m² being shared by four other children, had had to become remarkably conservative!<br />
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The doorbell rang and I cringed inwardly at the thought of having to tap into even more adept ninja moves, intercepting Sam's frustrated swipes at now FIVE moving (and thankfully, blissfully unaware) targets. A youngster of about 12 quietly entered the room with his adult companion. With my back being to the door and my neck currently alternating between despairing states of immobility or excruciating pain (but Yay! for still half-gracefully being able to carry 30kg's of flappy dude around right?) I had a limited view and decided a not-too-welcomed bear hug was needed by Sam at the very moment the newly-arrived patient had to brush by our chair into the room.<br />
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Surprisingly, no swipe...no smack...just the most magnificent smile as Sam watched the boy take a seat in the corner and pick up a magazine. As he settled quietly into his chair and I was able to glance more easily at the newcomer, I found myself suddenly fighting back overwhelming emotion as I instantly recognised his Down Syndrome characteristics. For the rest of our time in the waiting room Sam smiled, happy-flapped and ooooo'd admiringly at the very reserved youngster, the other energetic and now also agitated kiddies having suddenly become invisible. Sam has always shown recognition of other physically differently-abled children, for instance, when walking in a busy shopping mall he will quickly point out a child in a wheelchair, but this was more than simple recognition...it was a resonating of shared journeys and an instinctive knowledge that Sam and this boy were the same kind of different! Understanding this 'recognition' when the object of Sam's attention is in a wheelchair or walker or similar means of support is pretty easy, but his intrigue this time round would not have been triggered by any outward 'hints' and although incredibly heart-warming, has left me somewhat unsettled. <br />
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Because of having Sam's learning potential constantly undermined due to his physical challenges, finding a school which focuses on his cognitive abilities rather than the physical has been life-changing. With Sam suddenly seeming so perceptive to those around him though, I can't help but wonder what the effects will be of his being the only physically-disabled lil flappy dude in his school. I do see occasional inklings of frustration emerging (okay...maybe "occasional inklings" is a little conservative <i>#eyeroll</i>) but because in my heart I know that he would not thrive anywhere else, hope that I can find a way to instil upon Sam's heart the very thing I spend a decent amount of my time advocating for...that being "different" is not only okay, it can be a pretty profound state of being. Wish me luck xxx<br />
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Mother's Day this year was one for the books (or blog in this case) as it came complete with a school-made Mother's Day card from the lil flappy dude. Although I am pretty sure that Sam's not particularly invested in the sentiments of Mother's Day as, of course, every day is in fact Sam's Day (just kidding) he sure did seem super-chuffed with his card!</div>
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And immediately after Mother's Day the lil flappy dude went and turned EIGHT! With his birthday falling on a Monday, he had a small celebration with his classmates, which he was just as super-chuffed about...especially because there were balloons involved, the object of Sam's most passionate love-hate fascination.</div>
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And immediately after his birthday (like literally the next day) Sam went into theatre for his umpteenth number of grommets and for us to finally have an opportunity to intervene and hopefully provide some relief from the nasty issues those talon cusps have been causing. </div>
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The grommets were a breeze, as always! The talon cusps were filed down so that they now lie flush with the gum/palate and then a little of the surrounding gum was cut away to make room for the bulk of the cusp which has yet to grow out. Sam had also made light work of grinding another two teeth down into the gum. Luckily these were both still milk teeth which could be extracted to make way for the yet-to-make-an-appearance adult teeth. The work on the talon cusps proved a bit of a bloody affair and Sam was not entirely impressed with the generous mouthful of blood he woke up from anaesthetic with (apologies for the graphic details). Since the procedure, now three weeks ago, we have had a rather challenging time getting Sam to drink fluids. Follow up consultations have reassured that his mouth, throat and ears are all looking really good so it has been a little exhausting trying to figure out what the issue is, which issue is now causing some very unwanted bladder problems. For a host of reasons (which I am not going to go into now) Sam still drinks mostly from a bottle. Knowing his complicated sensory system, the chances are that the first few bottles after the procedure caused a significant amount of discomfort (we were warned this would be the case) and so Sam has now developed a negative association with a bottle. With another kid this could perhaps have been a blessing in disguise, an opportunity to animatedly introduce an alternate, way more fun drinking apparatus! This is, however, Sam...so I'm pretty much doing WWF-style moves while squirting small amounts of liquid down his throat. Could it possibly have gone any other way 😉 </div>
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And, in closing, some recent school pics...just because 💜<br />
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<br />Nickyhttp://www.blogger.com/profile/16316970339424084688noreply@blogger.com0tag:blogger.com,1999:blog-8848123426204206503.post-68971976407820198942017-04-30T00:21:00.002+02:002022-06-13T03:30:08.240+02:00LayeredWhen you hold your breath while signing in, for fear of being asked for a password you know you can't remember, then you know it's been too long. Almost a cool FIVE months. Wow! When opening Sam's blog I attempted a mental timeline of all that has happened over the last five months but, truth be told, I couldn't put together an accurate timeline of the last five MINUTES! You chuckle good-naturedly but, oh, I kid you not. So here's my Plan B...I've gathered what pictures I have left of the lil flappy dude (after my SD card threw me to the curb and dumped my almost 1000 pics and videos into some never-to-be recovered black hole) which I will post together with whatever details and emotions I can remember of that event. For the sake of deeming this post at least somewhat readable, we shall start with the most recent pictures first. If, after the sixth picture, the content reads along the lines of "<i>And here is the lil flappy dude at a place where he was doing some stuff and I was feeling bleh"</i> then feel free to simply ignore the words and scroll through the pictures!<br />
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Car trips have always been a little tricky with Sam, with the only car in which he feels reasonably safe in being my car. I often joke that even if I had to win a whopper of a Lotto, I'd still be driving around in my little red Clio because the alternative would be Sam never leaving the house. Very occasionally though we need to leave the house as a family and little Clio's do not make for fabulously spacious vehicles, so a trip in Dad's car becomes necessary. After a short time (about 30 minutes or so) Sam will eventually relax enough to breathe and perhaps even allow some circulation to return to the arms clutching so frantically to his seat. This will, however, only happen if the backseat has been reserved for Sam and I alone. Try as we might, fitting a 6.3ft man and two teenage girls into the front of a Hyundai has not yet been successfully achieved though so there have been odd moments when Sam has been required to share "his" backseat with someone else. These trips do not go well and usually find us aborting our outing because no social activity has yet proven worthy of the unbearable screeching we need to endure en route. In desperation one afternoon (and because my traumatised brain had convinced itself that Sam had sucked all the quality oxygen into his lungs in order to maintain such an impressive tone of screech), I opened the window. Bazinga! The kid went from crappy to flappy in 0.03 seconds. Our relief will be short-lived for sure as we are tentatively stepping into Autumn and the joy of driving with an open window might be a little less attractive in Winter. I say that but instantly hear the flappy dude's spirit mutter "Winter Schminter!"<br />
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At the end of last month, Sam went on his very first school outing. After almost ten months, I'm still sort of getting used to the kid being in school so his first school outing was pretty huge! Outings remain an unpredictable phenomenon in Smurfville. The ones you expect to result in chaos don't and those you feel are "safe" have you searching for a hammer and nails with which to board yourself and the flappy dude up inside the house for months thereafter. With my woodwork skills somewhat lacking, I decided to prepare for a, hopefully, hammer-free ending and arrived at Butterfly World a little earlier in order to figure out how Sam-friendly the place was, as well as to mark out possible exit routes. Well, the kid blew me away! We could have been going on a tour of the local butchery for all Sam cared. All that mattered was that his friends were there, along with his beloved teachers and Sam spent the morning in flappy blissfulness! He was even keen to touch (most) of the creatures during the reptile show...a little more keen than mom I dare say!</div>
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My first-ever, school-made Valentine's Day card from my warrior! Well, my first-ever Valentine's Day card from him at all for that matter. But this kid...at school...holding a paintbrush! It might seem a little blasé for some, but you need to have felt the hopelessness of having your child's potential repeatedly overlooked...the guilt of not being able to provide him with the guidance and expertise he desperately needs to thrive...the fear of him never knowing the joy and excitement of friendship, to be able to fully appreciate the profound hope <a href="http://edu-play.co.za/" target="_blank">Edu-Play</a> and seemingly insignificant treasures, like a precious little painted heart, ignite within you. </div>
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This one's a bit of a toughie...meaning, I am not yet in a good space with it all. On 3rd February Sam had an MRI and EEG after having experienced a change in both nature and duration of the, till then, very erratic seizures we were used to. We had tried to do an EEG before but when the lil flappy dude started resembling the Tasmanian Devil in his attempt to escape the sensory-overload of the electrodes, we surrendered after just 17 minutes with absolutely nothing worthwhile having been recorded. I had little hope for this EEG being any more successful. Surprisingly, Sam tolerated a full 20 minutes. No, not much longer than the previous EEG, except that this time there were enough "spikes" recorded during those 20 minutes to warrant an additional diagnosis of Epilepsy to our existing Rubinstein-Taybi Syndrome, Cerebral Palsy and Autism diagnoses. Sam struggled a little with the two hour anaesthetic needed for the MRI, which was to scan both his brain (for possible causes of the sudden change in seizure activity) and his spinal cord (to rule out re-tethering) but thankfully after about an hour-and-a-half his oxygen levels and blood pressure returned to normal. </div>
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The MRI confirmed the previous MRI's reports of Periventricular cysts and the RTS-related partial absence of the Corpus Collosum. However, this most recent report specified something new...static encephalopathy. It is effectively another form of Cerebral Palsy to add to the Periventricular Leukomalacia, but it is too an additional form of brain damage which was not there three years ago...and that's the part which has me unsettled. Sam's paediatrician reassured me that it is a non-regressive disease but does mean that developmental milestones not yet acquired, will most likely remain so...unacquired. For Sam, those developmental milestones include things like walking, effectively manipulating a spoon, etc. </div>
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While thankful that my Sam does not deal with heartbreaking medical issues like many of our friends do, there is still a sadness that comes with placing yet another obstacle (or two for that matter) on his path. There is also an underlying feeling of guilt which I cannot shake, despite knowing that it is something many mothers of differently-abled children deal with. Both the PVL and the encephalopathy are caused by oxygen-deprivation <i>in utero</i> and/or during birth...it is incredibly difficult not to dwell on decisions which I made during the last few weeks of my pregnancy...decisions which were undoubtedly instrumental in the difficulties Sam now faces. It does not end there...there is an irrational but incessant need to go back to where I was eight years ago, devoting every waking hour to Sam and ensuring I was doing everything within my power towards helping him progress...and on top of that a final layer of guilt that I am not doing that now. </div>
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You get my eluded "good space" now? </div>
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I can tell you one thing, with his RTS diagnosis at birth in 2009, Sensory Processing Disorder added in 2011, CP and Autism added in 2014 and Epilepsy and Encephalopathy added now in 2017...there is not a chance you're getting the flappy dude near a radiology department in 2020!! Lol! </div>
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But, in true warrior style, we keep on keeping on and will find our way back to that good space. Till then...</div>
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Sam celebrating his friend, Ethan's,</div>
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birthday at school.</div>
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Happy to do tasks he refused</div>
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to do at home. Go figure!</div>
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Sam and Leeanne, his dedicated and</div>
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ever-patient carer.</div>
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Again...a puzzle I donated to the school</div>
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cos Sam refused to do it at home. Cheeky</div>
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monkey! Lol!</div>
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<br />Nickyhttp://www.blogger.com/profile/16316970339424084688noreply@blogger.com0tag:blogger.com,1999:blog-8848123426204206503.post-34774397608612449052016-12-03T00:02:00.001+02:002016-12-03T08:54:11.424+02:00TEETH, FEET AND A FIRST EVER SCHOOL CONCERT GONE SMURF-SHAPEDWoo Hoo! A blog post! This is like, what...my sixth one for the year! Really quite pitiful, if I do say so myself, especially as there are so very many things going on in the Lil Flappy Dude's life that I could probably easily blog every day. <br />
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Where should we start....let's start with some of the not-so-fabulous stuff and, as always, end off with the good stuff. <br />
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Teeth! Teeth? Yes, really...teeth. Of all the issues we'd prepared to deal with when Sam was diagnosed with <a href="https://en.wikipedia.org/wiki/Rubinstein%E2%80%93Taybi_syndrome" target="_blank">Rubinstein-Taybi Syndrome</a> I not once expected TEETH to be such an issue. What the doc should have said when giving us the low-down on RTS was "Child will have walking issues, feeding issues, breathing issues, sensory issues, spinal cord issues, testicle issues, speech issues, orthopaedic issues, digestive issues <b>BUT</b> out of <b>ALL OF THOSE</b> issues....the one which will challenge you the most is <b>TEETH!!</b>" Okay, I'm being a little melodramatic...which is completely out of character...but still. So we were nearing the end of the three months we had to wait to see what that little <a href="https://en.wikipedia.org/wiki/Talon_cusp" target="_blank">talon cusp</a> was going to do and were thankful that the area around the talon cusp had seemed to settle (after lots of infection and inflammation) when a couple of weeks ago Sam started refusing to eat and drink again. I thought it was just another round of irritation so had a look inside Sam's mouth and was not too happy to see another talon cusp coming through. Another three-month wait here we come. With (I think) most of the Rubinstein-Taybi kiddos having developed talon cusps, the issue itself is not anywhere close to being considered medically "serious" or anything like that, but it's all the spin-offs from this "small" issue which are really quite frustrating. <br />
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As always, Sam's first line of defence is to throw some hectic oral sensory aversion at me and refuse to eat or drink...a little annoying but, oh, we've done our time with this stunt and it eventually comes right. The more worrying problem is that he steps his teeth-grinding up a level or ten. We've already had to cut the remains of one ground-down tooth out of his gum which caused the subsequent adult tooth to come out sort of in the front of the gum as opposed to out the bottom of the gum because it could not break through the area which had been stitched closed after the procedure. Now, with there being more irritation in his mouth, Sam has managed to completely grind down yet another tooth into the gum and has another two, mere days away from going the same way. I get that Sam's <strong>REALLY</strong> into doing things a little different (because after all <strong><em>DIFFERENT IS COOL!)</em></strong> and I'm really into embracing all that funky difference. But every now and again maybe doing one or two things in the normal way...like just having your teeth come through the right spot in the gum...would be quite fab. <br />
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Funny story though...when we were done with our most recent sensory-instigated fast, the lil dude decided that he was done with pureed foods. Yay!! Of course, we've been here before, but this time it really is looking promising. We last had pureed food a little more than a week ago ("we"?...because I make a habit of eating pureed food?) and have done really great with sliced beef and chicken, just the minced meat remains a very expressive no-no. So the meat might have been cut up really small. Like REALLY small...like to about what I'd imagine an ant's portion would be. But still, progress is progress so it most definitely counts. Only time will tell how long we will be doing ant portions of food though because Sam's sensory issues and digestive issues are not usually keen on parallel progress...but here's hoping! <br />
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Random funny story...Sam watches a bit of tv in the morning when he wakes up so that I can try get all the morning tasks seen to. If Sam has not woken up by a certain time, I usually put a movie on (always Teletubbies Bedtime where Alex sings <em>"Wake up sleepy head</em>"...pretty cute hey?) quite loudly, but on the odd occasion that Sam wakes up before that, he sticks his hands out from under the blanket and before even opening his eyes will sign whichever movie he wants to watch...and it's never Teletubbies Bedtime. You sort of have to see it to appreciate it, but basically he'll be lying dead still (which generally only happens from about 5am onwards) and all of a sudden two little hands will frantically pop up and sign the desired dvd in an exaggerated and very cheeky way...which is so odd, because our lil flappy dude is <em>NEVER</em> cheeky (*<em>exaggerated eyeroll</em>).<br />
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Seeing as we're currently into all things -free (puree-free...sleep-free) we decided to have another shot at nappy-free...or as close to that as we can get. <span style="color: red;"><strong>WARNING</strong> : POTTY-TALK TO FOLLOW!</span> Previous attempts have been a bit tricky. While you can get Sam to pee on demand, he doesn't quite seem to grasp the concept of telling you when he has the need to go (there had been a degree of damage to his bladder prior to the spinal cord surgery but there was almost a remarkable improvement after the surgery which in my layman's mind would say that Sam should recognise the "urge" to pee, but specialists' opinions seem unclear). This might not seem terribly problematic but when attempting to potty train the last time, we found ourselves in a situation where Sam would only urinate when I took him to the toilet, he just refused to pee in a nappy. The challenge with this is that he freaks out when sitting on the toilet, so he needs to stand...which would ordinarily not be an issue...except that the lil dude obviously cannot stand unassisted. So I land up supporting him, which leaves those little funky hands free to roam the toilet. Eeeeek! At home this is thankfully a little less of an Eeeeek! but this method of peeing means that Sam using a public toilet is not an option. The tricky part comes in when you're doing a four-hour trip to Stilbaai and the dude won't pee in his nappy and cannot use a public toilet. You see? Tricky indeed. Luckily I spotted this nifty little item on Facebook recently...<br />
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...and we're giving it a go...and a rather successful go at that. We've gone days where Sam has only used one nappy the entire day and he seems to have gotten over the idea that he cannot alternate between nappy and toilet (even though it was actually pretty awesome that that was his mindset). The only minor obstacle here is that I haven't quite yet figured out how I'm going to go about sticking little green, froggy urinals in every public bathroom we might ever need to visit in the greater Cape Town area. It's a little all over the place for now but it's a start (again)...an awfully tricky start...but a start nevertheless.<br />
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And we're almost on to the really good stuff (nay...awesome stuff). Last bit of trickiness comes in with those funky little feet. After acquiring some rather entertaining physical issues (a hip which keeps clicking out...a knobbly-thingy protruding from my neck...and and) I thought it might be best to stop carrying our 25kg's of smurfiness around. Understandably the lil dude was not too excited about having to abandon his go-to mode of transport, being mom's hip, but now seems quite keen to walk into school (assisted of course) in the mornings...unless we are late (which, ahem, almost <strong>NEVER</strong> happens) then hip it remains. So, lil dude is keen to <em>'walk</em>' and mom is keen to have something vaguely resembling an aligned body back at some stage - it all sounds pretty peachy. Which it is. Except for these uniquely-designed little feet :<br />
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While it's pretty awesome to see how steadily more confident Sam is becoming on his feet, it's a little worrying that these little feet seem to get more funky by the day. Sam is not very keen on walking with his AFO's on, but walking without them seems to be worsening both the <a href="https://en.wikipedia.org/wiki/Hallux_varus" target="_blank">Hallux Varus</a> in the left foot and the <a href="https://en.wikipedia.org/wiki/Pronation_of_the_foot" target="_blank">over-pronation</a> in the right foot. So, the problem - Sam needs to walk. Sam does not want to walk with AFO's. Sam's feet are thus becoming more funky. The solution? I am clueless. For now. <br />
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And on that terribly constructive note...here's the AWESOME!<br />
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My precious little, triple-diagnosed, previously deemed "ineducable" and only worthy of "a place to put him so I could go on with my life" flappy dude took part in his <strong>FIRST EVER</strong> school concert. This mama's heart near exploded with pride and awe as I watched him...what an incredible kid! What an incredible inspiration! What an incredible <a href="http://edu-play.org.za/" target="_blank">school</a> for being able to recognise the potential which lay hidden in the non-verbal, sensory-dominated labyrinth in which Sam waited to be discovered. Thankfully though, before I could embarrass myself by turning into a blobbering mushy mess, my not-so-little-anymore very flappy and terribly cheeky dude decided to throw a Sam-spin on things...see for yourself xxx<br />
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Nickyhttp://www.blogger.com/profile/16316970339424084688noreply@blogger.com0tag:blogger.com,1999:blog-8848123426204206503.post-68703111098332745102016-10-30T21:09:00.000+02:002016-10-30T21:09:14.322+02:00An abundance of FIRSTS! Sam's very first school term (semester) has come and gone..hard to believe that it's been more than three months since I sent Sam's tutor dismal messages about not being able to find the '<i>right</i>' carer for Sam, which would prevent him from starting the term with every one else just five days later. Yet here we are several classwork activities, one progress report and a very-first parent/teacher meeting later. I still find myself occasionally bordering on disbelief at the unexpectedly painless transition from homeschooled to classroom for Sam...if I've said it once, I've said it a million times...this is just not how I expected things to go. But, have no doubt, there are no complaints about avoiding the resistance I anticipated. <br />
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It was incredibly emotional opening Sam's bag up at the end of the term to his report and classwork books, sent home for review. Sam thoroughly enjoyed going through his school books with me and pointing out the activities which were obvious favourites :<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjj8hURJLAgY0M9naJ7rsbSQz5wWnSam_cNUfEjCBUwgvSE7GY_jybT6V77fDpBN-OkBVEo-MG6kHKuWBX2CvFRW-RVIuks_vAQb674bdSgTgqIQS8jw4b6VOgFoISHTagWVnrTdVA-0fo/s1600/PicsArt_10-22-09.11.34.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjj8hURJLAgY0M9naJ7rsbSQz5wWnSam_cNUfEjCBUwgvSE7GY_jybT6V77fDpBN-OkBVEo-MG6kHKuWBX2CvFRW-RVIuks_vAQb674bdSgTgqIQS8jw4b6VOgFoISHTagWVnrTdVA-0fo/s400/PicsArt_10-22-09.11.34.jpg" width="263" /></a></div>
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As was expected I guess, Sam's immune system did take a bit of a knock and we had a bit more of a troublesome Winter this time round (bar our fab run in with Rotovirus last year). Thankfully we've stuck mainly to URTI's and a coupla bouts of croup (although pretty resistant bouts) which is hardly anything to really complain about. </div>
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There have been some other unrelated 'bumps' as far as health goes...a few petit mal seizures (which were accompanied by an uncharacteristically sleepy Sam), the <a href="https://en.m.wikipedia.org/wiki/Hallux_varus" target="_blank">hallux varus</a> in Sam's left foot seems to be worsening at an alarming rate and, just to make sure we're covering as many areas as possible, Sam has two fabulous <a href="https://en.m.wikipedia.org/wiki/Talon_cusp" target="_blank">talon cusps</a> sprouting in that already-funky little jaw of his.</div>
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The petit mal seizures seemed to have righted themselves and the.most.painless.blood tests.EVER confirmed that Sam's Epilum levels are spot on. And yes, I can say that Sam having his blood drawn was painless on his behalf because we went into the pathologists late one evening (which should only have made the process more traumatic with Sam not liking his evening routine disrupted), wrapped Sam up tight in a blanket to help get a grip on his (usually) pretty powerful struggling and mentally prepared ourselves for the auditory onslaught which would undoubtedly be assaulting our ears. And yet, although the lil flappy dude was shaking with fear, the needle went in with ease (after a few iffy attempts at locating a vein which is almost always impossible and something we seldom do without anaesthesia) and almost instantly the blood flowed into the tube. And that was that...not a peep, not a tear. The sleepiness largely seems to have righted itself as well, with the exception of one or two random incidents last week. Sam's iron levels came back a little high (just over double what they should be) which was a little unexpected for a kid whose diet consists mainly of gluten-free pasta and he seems to be struggling to regulate his body temperature more than ever before, particularly at night and in the mornings despite usually having on a least one extra layer of clothing than what everyone else has. We eagerly await the new 'medical' year so that we can run a few tests to make sure that there is nothing ominous going on with Sam's pituitary gland.</div>
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With '<i>firsts</i>' being the order of the day...month for that matter...there have been a few more surprises. After struggling to get Sam to tolerate any other liquid other than warm Pediasure, Sam now manages about 100ml of juice from a squeeze bottle when at school! (And, yes, he of course refuses it at home). About a week ago while sitting on the couch reading with him one afternoon, Sam asked me to put his specs on. Sam <b>ASKED</b> to have his specs on!! The very same specs which over the last 7/8 months get flung violently across the room the second they come within arm's reach. So last week I sent the specs to school with Sam's carer, Leeanne, and asked her to just try and put them on for short periods of time...by Friday not only had Sam asked for them again, but had kept them on practically the whole day. While I am a little worried that Sam's eyesight possibly deteriorating may be the cause of his sudden eagerness to wear the specs, on a positive note (other than the obvious YAY for wearing them) it makes me think that Sam is so keen to soak up as much as what he can from his activities at school that he's prepared to do the necessary in order to learn more, which in turn means that he was able to quite effectively <b>REASON</b> through the situation. Not too shabby for an ineducable lil flappy dude hey? </div>
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Amongst an overwhelming number of things to be thankful for during this unexpected, yet very welcome, twist to Sam's journey comes one 'tiny' regression and that being that Sam has effectively decided that life from here on forward shall consist solely of home and school! There shall be zero tolerance for any deviation from the, now, extremely limited scope of accepted social activities. There was a short, one-week school break a few weeks ago and already on the Saturday after school closed (on the Friday) Sam was signing "<i>school</i>". By the Thursday I was about ready to go deposit him outside the school gate in anticipation of the Monday's return to 'normal'. The fact that we live 3 minutes away and drive passed the school regularly, does not help at all...LOL! So yeah, the lil flappy dude is not currently in the running for social butterfly of the year but it's an extremely small price to pay for the peace of mind that comes with knowing that he's exactly where he's meant to be.</div>
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One of Sam's Spring class activities</div>
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And a fabulous looking snowman indeed</div>
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Another 'first'...yes, that's shaving cream!</div>
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<br />Nickyhttp://www.blogger.com/profile/16316970339424084688noreply@blogger.com0tag:blogger.com,1999:blog-8848123426204206503.post-42915361034540244642016-09-01T23:46:00.002+02:002016-09-01T23:46:40.273+02:00Are We There Yet?<div class="separator" style="clear: both; text-align: left;">
<em>Where?</em></div>
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<em><strong>Okay</strong>....are we <strong>okay</strong> yet?</em></div>
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The first five years are the most challenging...after that, everything seems to settle and you'll be okay...one of the most regularly-shared reassurances we were offered during those first years. Gosh...Year 5 became my desperately sought-after utopia, if only we could make it to that benchmark, then we'd be <strong><em>OKAY!</em></strong> </div>
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Except...we didn't get okay! Instead we got <a href="http://samtheconqueror.blogspot.co.za/2014/06/hey-i-was-happy-in-holland.html" target="_blank">Belgium</a> and Belgium was pretty sucky as it came in the form of an additional diagnosis, <a href="http://www.cerebralpalsy.org/about-cerebral-palsy/cause/periventricular-leukomalacia" target="_blank">Cerebral Palsy</a>. That is just so not how it was supposed to go. Initial diagnosis at birth - <a href="https://ghr.nlm.nih.gov/condition/rubinstein-taybi-syndrome" target="_blank">Rubinstein-Taybi Syndrome</a>. Great, got it...no speaking, feeding issues, ineducable...blah blah blah. Or so according to Sam's (then) paediatrician. So, shatter all dreams for your littlie and try and just get through each day at a time...and literally at that stage because the little dude wasn't quite sure he wanted to do this whole ventilation-less breathing thing or leave his entertaining game of musical incubators in the NICU so for the first few weeks, each time entering the NICU was accompanied by crushing waves of nausea and fear about whether Sam had managed to make it through the night without slipping back to High Care. But then we linked up with other parents of RTS kiddos...parents who were a more accurate and encouraging source of information and support than any medical journal and/or individual divulging said information...and we discovered <strong><em>okay</em></strong>, where children with RTS <strong>DID</strong> in fact thrive and learn and communicate (perhaps not verbally) and went to school and were so very educable. So...kept the eyes focused on that five year mark and bulldozed ahead through therapies and surgeries and doctors' appointments and regressions and illness and and and...because at the end of all those draining challenges was our okay. Except, literally days before our five year mark, our okay got ever-so-slightly crushed with the results of an MRI which explained why Sam was not yet quite achieving milestones other RTS peers had by his age. </div>
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I think I kind of gave up on okay. I certainly was not going to go setting new benchmarks because the tricky combination of Sam's diagnoses (Yeah, we got to officially throw Autism in there as well) meant we no longer had a clear guide as to what to expect when, with no similarly effected children to draw measure from. So, benchmarks are just not our thing it seems. I felt kind of lost. Actually, I felt very lost. There was no longer a plan with a somewhat defined goal. We were goal-less. Goal-less is not great I tell you, it can suck the motivation and spirit to keep going right out of you. So we threw goals out the window and just went with whatever was working for Sam at that moment. And, at that stage, it was one-on-one tutoring with as little social interaction or change of routine as possible. And that worked really well, for a while. </div>
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But by mid-way through last year things changed. With no experience in teaching and/or educational guidance whatsoever, I ran out of stimulating things to challenge Sam with...and he became extremely bored with the work I was doing with him. Aggravating the situation more was the disruption of our every day routine after I joined the <a href="http://danielandfriends.com/daniel/" target="_blank">Danniel and Friends Fund </a>and while I was revelling in having something so exciting to throw myself into, Sam was doing just the opposite. Still, there were no schools which I felt were adequately able to withdraw the immense potential lurking beneath the lil flappy dude's packaging and so homeschooling it stayed. </div>
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And then 2016 happened : </div>
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Where Sam finally overcame his fear of sitting on unfamiliar objects </div>
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and ventured onto a (for all intents and purposes) "Mickey Mouse"</div>
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one Sunday morning...granted after much coaxing from Dad.</div>
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And the newfound courage to try new things lingered a little longer.</div>
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And we added a member to our family - Chipolata aka "Chippy"</div>
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who first caused incredible disruption in our home as Sam battled</div>
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with the idea of having his place of comfort so vigorously invaded</div>
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by this not-so-welcome addition. But before long, the two had bonded</div>
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and now every day upon arriving home from school, Sam first spends</div>
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be just as flappy a dude as Sam) offering his hand to Chippy for some </div>
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crazy-affectionate licking and nibbling. </div>
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Um...did you spot it...<strong>THAT</strong> word...<strong>school</strong>! </div>
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At the beginning of the year Sam and I started attending one-on-tutoring sessions at a newly opened school closeby, <a href="http://edu-play.co.za/" target="_blank">Edu-Play</a>. The sessions went extremely well. Sam completely soaked up what was being shared with him as the activities were being tailored specifically to Sam's style of learning and the patient, accepting and genuinely caring atmosphere of the facility made Sam feel comfortable and safe. At the end of the second term, Sam's tutor, Carlyn, suggested finding a carer/facilitator for Sam and enrolling Sam in fulltime classes. Neither my mind nor my heart could work my way around the idea. I'd given up on the idea that Sam would ever do something as "normal" as go to school, especially here in South Africa where not only are schools for differently-abled children limited, but schools which can cater for as unique a combination of diagnoses as Sam's are very nearly non-existent. Even as I started the process of trying to find the right carer for Sam, I don't think I ever really considered it becoming a reality. And it almost didn't. Finding a carer for Sam proved more tricky than I'd anticipated and it was literally two school days before Sam was meant to start that Leeanne happened upon our little flappy dude. </div>
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So, on the 18th July 2016 I drove Sam and Leeanne to school for the very first time. To be able to indulge in an activity so normal and taken for granted by so many others, is without words. Sam's unexpectedly comfortable transition into his new routine still has me a little surprised, but reassured that he is happy. As Sam nears the end of his seventh week in school, the novelty of each trip to and from school remains. Over the passed couple of weeks Sam has been trying desperately to communicate more, becoming extremely frustrated when I am not able to fathom the signs he has resigned to making up himself when I do not grasp what he is trying to say. It is a frustrating process, but also an encouraging one which I am sure can be built on to try and shape a way forward for some form of effective communication medium for Sam. Being the only child in the school who is not able to walk, Sam has also started taking one or two steps on his own, although he is still extremely fearful and cautious. On several occasions now he has stood completely independently to be able to use both hands to sign to me. There was a nasty fall that happened a few weeks ago with one such incident, but the anticipated regression which would usually come with such a fall was short-lived and seemingly quickly forgotten. The extent of Sam's progress over the last month-and-a-half is something I would simply not have imagined and without a doubt I know that Sam is where he is supposed to be right now, tapping into yet-to-be-discovered potential. It makes my mama heart burst with pride. And as I read the daily reports about what Sam has done at school, look at pictures of his daily activities and still occasionally glance over Sam's very first Playball report, unpack his lunchbox and prep his schoolbag for the next day I sigh and dare for a moment to entertain the idea that I think we have finally made it to okay. </div>
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Nickyhttp://www.blogger.com/profile/16316970339424084688noreply@blogger.com1tag:blogger.com,1999:blog-8848123426204206503.post-83101371368841447162016-04-09T22:40:00.001+02:002016-04-10T16:48:02.072+02:00Shame, Superheroes and Acceptance<div dir="ltr">
Wow! Just over two months since I last blogged! <i>Hangs head in shame.</i></div>
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What's been happening here in Smurfville? I think I would need to be able to make some sort of sense of it all myself to be able to communicate it in a way that would in turn have it make sense to someone else. But I don't. So I can't. </div>
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Again, no major life-threatening matters clouding our skies nor anything which most would consider detrimental to one's quality of life, but yet they are issues which are just that... </div>
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Sam's eating issues are still erratic and perplexing, yet thankfully there has been some improvement this week. For a long while he became so resistant to food that not only would he refuse eating it himself but would act out against anyone who was eating near him. This week, for the first time in months he asked for what used to be one of his favourite snacks - mini Marie biscuits. He did throw the bowl, contents and all, after two biscuits but it was a start. The next day Sam ate almost half of my toasted sarmie and seems to be back on track with eating again, which would've been great if we hadn't simply traded eating issues with drinking issues. </div>
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As those who know Sam personally are aware, he has a major sensory aversion to moving liquid of any kind...a water-hose running, water moving/splashing behind him in the bath and, always most entertaining, liquid in a bottle. Yes, at almost 7 years of age, Sam still drinks from a bottle...for two reasons :</div>
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Firstly, his oral defensiveness is so severe that trying to manoeuvre anything else besides his Avent teat passed his lips is a no-go. Also, he never closes his mouth around anything besides the teat...be it a straw, pump bottle, cup...whatever. </div>
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Secondly, Sam never had and still doesn't seem seem to have a natural swallow reflex, so even if you did manage to get him to close his mouth around a spout or whatever, he would more than likely choke on whatever liquid I'd managed to get into his mouth. Even after 6+ years on a bottle, he still sometimes chokes or somehow manages to get the milk up his nose, especially when I've tried to thin the Pediasure a little to try dilute some of those calories. </div>
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So warm Pediasure from a bottle has been his only form of hydration for many years. And still, Sam has never been 100% comfortable with even the bottle. A minimum of 5 bottles a day, every day, for the last almost-three years (because it took him 4 years to conquer enough sensory issues to simply touch the bottle) was met with the same process...the bottle would be handed to Sam (always at the precise temperature) and Sam would hold the bottle to his mouth and mentally prepare himself for having the liquid in his mouth. You think I'm exaggerating...being a little melodramatic perhaps? Close friends and family know the process well and have even joked good-naturedly that it looks as if Sam is first praying for his milk. </div>
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Despite there being some regression with the whole drinking thing, it has brought with it an unexpected benefit. While I can live with the refusal to eat, with Pediasure providing more than ample nutrition for it not to be anything more than a little disappointment at another step back, not drinking as well had me worried to the point of desperation. When pouring Pediasure into the lil dude's mouth from a cup/bottle lid resulted in such bad chokes that the milk would eventually spew from his nose, not to mention the amount of Pediasure which was being wasted as it poured from his never-closing mouth, it was time for some tough love...in the way of a Winnie The Pooh squeeze bottle. Granted there is no contact between lil dude lips and the bottle, but squeezing the milk in sure is a whole lot less messy and after a nasty choke or two, Sam seems to accept the squeeze bottle as a means of drinking and even seems less fussy about the temperature of the milk so big YEAH for not having to carry flasks of boiling water and a jug everywhere with us. </div>
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As it turns out, Sam's teeth seem to have been the problem with the drinking issue. His adult teeth push through before the baby ones fall out so in two separate places there were two teeth in one socket and I could actually hear the teeth grinding against each other when he drank, causing (I'm sure) the most horrific sensory repulsion. Since the one tooth has now fallen out (and escaped into the Bermuda Triangle that be the lil dude's digestive system...pretty much like every other tooth he's lost naturally) and the second loose tooth is slanting at an odd angle, drinking over the last 24hrs has been almost back to normal except that Sam will not place the bottle in his mouth himself...almost as if he doesn't trust himself to do it without creating that awful grinding again. </div>
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A re-visited challenge we're finding probably the most difficult is travelling. Sam has always been terrified of being in a car, but was least anxious when in my car with the most challenging part having been getting him into the car. Often there were frantic handfuls of hair grasped...little nails tearing at arms and neck when the 2 second manoeuvre to settle him into his carseat would require an ever-so-slight backwards tilting. But once strapped in, he would settle down quickly and that was the end of the panic. Recently though, when we've needed to travel as a group to a meeting or the like, I've had to put his carseat into a friend's car...which of course would not only result in the most aggressive car transitioning but a lil dude so panicked that his white-knuckled hands would not let go of the arms of his carseat, back arched in super-defensive extension and breathing happening in short, shaky gasps...even though I was sitting next to him providing deep-pressure comfort across his torso. Obviously I did this once too often because gone is the comfort he found only in my car and instead each and every trip we've made over the last couple of weeks has been reacted to as if in a strange car. It's fairly exhausting and any effort in the way of tidy hairdo's is destroyed within seconds of trying to get Sam into my car, replaced instead with what leaves me looking like I've been involved in the most heated of cat fights, with random loops of hair gone astray from my once-tidy ponytail and scrawly scratches for extra affect. Of course there's an upside...I've often joked that even if I won the lottery and could afford the most extravagant of vehicles, my little red tjok-tjorrie would still have to make do...but hey, now that the comfort once associated with that little red tjok-tjorrie is gone, there could be no more perfect time for an extravagant vehicle. Now to see about that lottery ticket....LOL!</div>
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It's too easy to become frustrated, impatient and despondent when facing some of Sam's challenges. But can you imagine spending 90% of your life captive to one fear or another? Simply trying to create an idea of what it might be like lends me the confidence to say that I would not have managed to overcome many of the issues Sam has....so whether we're screeching like a loon in the middle of a shop, nearly suffocating ourselves with the fear that goes with being in a car lately or diving face-first into a bath full of water because a ripple of water moved behind us...Sam remains my SUPERHERO! </div>
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April is Autism Awareness month and while Autism is just one of Sam's three diagnoses (together with <a href="https://en.wikipedia.org/wiki/Rubinstein%E2%80%93Taybi_syndrome" target="_blank">Rubinstein-Taybi Syndrome</a> and <a href="http://www.cerebralpalsy.org/about-cerebral-palsy/cause/periventricular-leukomalacia" target="_blank">Cerebral Palsy-Periventricular Leukomalacia</a>) it has, for some time, been the condition we struggle with the most as it is predominantly responsible for creating the challenges we battle when dealing with what should otherwise be simple day-to-day tasks...and so we are as passionate about raising awareness for Autism, as for the other two conditions. Having said that, Sam's t-shirt sort of sums it up...</div>
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<strong>AUTISM AWARENESS IS SO LAST YEAR...IT'S TIME FOR ACCEPTANCE!</strong></div>
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Nickyhttp://www.blogger.com/profile/16316970339424084688noreply@blogger.com0tag:blogger.com,1999:blog-8848123426204206503.post-4117381773612025352016-02-07T08:45:00.001+02:002016-02-07T21:36:07.012+02:00MAKING SURE WE'RE HEADED IN THE RIGHT DIRECTION<p dir="ltr">Gone, thankfully, are the days of hauling out cryptic map books when searching for never-been-there-before locations. Nowadays we jam on our GPS of choice or, if you're like me, Google Map every place before the time, preferably with a streetview, so that you can memorise all surrounding street names (just in case) and even a "landmark" or two. While I've not yet needed to purchase a GPS of the conventional kind, I am privileged to be accompanied on each trip by a location-finder of sorts anyway. Fabulously impressed that my particular GPS is spared the usual mechanical, insufferably-monotoned verbal directions, opting instead for charming grunts, excited gestures and warning screeches when necessary, the only snag is the rather limited choice of destinations (exactly two in total) and just as limited routes thereto. The you're-heading-in-the-incorrect-direction alarm could also benefit from a volume button or, even better, simply a MUTE button, particularly when attempting to make which is nothing more than a 200 metre detour in order to take care of the concerning petrol light results in such extreme protesting that you look worriedly passed the light, take a breath and hope that there are sufficient fumes to carry you and said screeching GPS home.</p>
<p dir="ltr">This little dude...always an enigma with his odd Sammerisms. Almost as enigmatic is his exceptionally accurate knack for remembering the makes of cars and who drives what. Every car trip, even while ensuring we are travelling his preferred route, is spent scanning the roads and pointing out every make of car he recognises. Different colours don't confuse him, so its the model of the car Sam's actualling taking note of and then excitedly gesturing whether it's Daddy's car, Nina or Lisa's car, etc. With mind-boggling perception Sam will notice a car whisk briefly across the road, even from a surprising distance. It's really quite intriguing.</p>
<p dir="ltr">Unfortunately we received some not-so intriguing news on Monday regarding Sam's vision. With Juvenile Glaucoma being linked to Rubinstein-Taybi Syndrome, for <u>the</u> first few years of life Sam underwent six-monthly Glaucoma examinations under anaesthetic, as the Opthalmologist we were seeing felt that Sam tolerating the examination simply in his consulting rooms was highly unlikely. Luckily (?) as Sam was having surgeries almost every six months at that stage, finding theatre time to couple the examination with was never a problem as having Sam undergo anaesthetic simply for a 5 minute exam was also not ideal.  However, the only surgery Sam has had over the last two-and-a-half years was done with less than 24-hrs notice which was just not enough time to bring an Opthalmologist on board. </p>
<p dir="ltr">Concern growing with each passed examination-less month and Sam seeming to have lost interest in reading flashcards and books like he used to and even becoming a little agitated when I tried, I decided to make an appointment with a local Opthalmologist to discuss going ahead with the examination in theatre, even if it had to be a 'wasted' anaesthetic. When we arrived at the rooms, the receptionist asked what we were needing to be done and when I replied that I was wanting to make arrangements for the Glaucoma examination, she walked over with some eyedrops to dilate Sam's pupils. I laughed and told her not to worry as there was no way Sam was going to sit calmly through it. <u>She</u> suggested we try some drops just in case...and what a worthwhile suggestion it was. Sam did awesome through the examination, scan of the optic nerve and the tonometer. The great news is that there are no signs of glaucoma. The not-so-great news is that Sam is considerably visually impaired and should have been wearing specs years ago already to make the most of the limited time during which your eyesight develops. With vision teaching optimum development around 8/9 years of age, Sam's been robbed of some much-needed time. So specs have been fitted and once the apparently fairly thick lenses have been fitted, we'll dash down to collect so that not a second more is wasted. </p>
<p dir="ltr">Besides helping with his vision, Sam's physiotherapist is hopeful that being able to see better will increase Sam's potential to walk unassisted as he'll be able to more accurately judge the distance between himself and, for example, furniture. </p>
<p dir="ltr">A sneak preview...Sam quite happily tolerated the specs but there's quite a difference between keeping them on for 10 minutes compared to 10 hours. <br><br></p>
<div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNqt6-9q3e4Dx5fCB4wjUEVSyu6A9wVhoe8HiNYNe2f7OImJUmSG_t4ZAHlIqqEgWd0R3XKZEjZgiv2AiH17KJNBjOfFeZTx1DQVWUflxLrxYD99T1D-sUCCwEsZIJl8eXsgDTll4tDbw/s1600/2016-02-06_17.16.31.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNqt6-9q3e4Dx5fCB4wjUEVSyu6A9wVhoe8HiNYNe2f7OImJUmSG_t4ZAHlIqqEgWd0R3XKZEjZgiv2AiH17KJNBjOfFeZTx1DQVWUflxLrxYD99T1D-sUCCwEsZIJl8eXsgDTll4tDbw/s320/2016-02-06_17.16.31.jpg"> </a> </div>Nickyhttp://www.blogger.com/profile/16316970339424084688noreply@blogger.com0tag:blogger.com,1999:blog-8848123426204206503.post-10965298107981335552016-01-06T08:46:00.001+02:002016-01-06T09:07:18.322+02:00Celebrations Re-visited<p dir="ltr">Six days into 2016 already! Wow! I so planned an end-of-year, this-is-where-we're-at post. Guess we're doing a beginning-of-new-year, this-is-where-we're-at post instead. </p>
<p dir="ltr">Festive-Season plans were kept on the subdued side this year as Sam was scheduled for a Tonsillectomy on the 15th and the ENT doc had told us to prepare for a pretty hellish two weeks of recovery. And what would Christmas be without a surgery/illness anyway, <u>right</u>? Christmas 2010 we did Spinal Cord surgery on the 20th December and since then some-or-other bug each and every year. </p>
<p dir="ltr">On the 14th December (having finally made peace that removing Sam's tonsils was the only way to go and keen to just get it over and done with) we had a consult with Doc ENT, who had last seen Sam in October, to a) run through the final details for the following day's surgery and b) check that Sam was good to go for theatre and, more importantly, anaesthesia. After an extremely thorough examination Doc ENT concluded that he could not be certain that Sam's tonsils were the cause of us not having had a decent night's sleep in the last six week. Yes, he reasoned, the tonsils are enlarged but not barely close to what is referred to as "kissing tonsils" which is when the tonsils are so large that they actually touch (can you imagine?). Sam's greatest breathing issues come from having an extremely deviated septum in the right nostril which is almost completely obstructed (so much so that when I spray Sam's nose he has to lie on his back to allow the little pool of liquid to slowly drip passed the septum) and the common RTS floppy airway. Doc ENT advised that there are usually only two reasons why tonsils should be removed...significant airway obstruction and repeated tonsillitis (more than twice in a twelve month period). Already confident that removing the tonsils was not going to make a worthy difference to Sam's quality of sleep (which was our main objective) and with Sam last having had tonsillitis about 4 years ago, he was not 100% comfortable with going ahead with the Tonsillectomy and presented it in a pretty convincing argument, saying that should there be any complications and he was to land up in a Court with questionable motivation for having performed the procedure, there would not be sufficient medical background to substantiate his decision. </p>
<p dir="ltr">So...surgery scrapped for now! </p>
<p dir="ltr">Doc ENT did refer me to a dietician as he feels we are not managing Sam's reflux as efficiently as possible and this is in fact what is causing the constant irritation in Sam's throat. He suggested trying to get Sam off pureed foods completely and as quickly as possible as the absence of chewing (which stimulates the production of digestive enzymes) aggravates reflux and also suggested a completely dairy-free diet. Yikes! A tall order for a kid with extreme sensory challenges whose diet consists purely of pureed meat and veg, cheese, yoghurt and the occasional mushy mac and cheese. Oh well...what were we to do but give it a go. Doc ENT feels that with an adequate lifestyle-change regarding Sam's eating habits, his reflux should be so efficiently managed that medication should no longer be necessary. </p>
<p dir="ltr">For 13 consecutive days (starting immediately on the 14th)  the Lil Smurfy Dude ate all things un-pureed...WHOOP! WHOOP! Chicken and even beef finely cut up and mixed with veggies and couscous was a HUGE thumbs-up. And then? He stopped as quickly as he'd started and we were back to pureed foods. Well, actually at this point, we're back to NO food as its been almost a week of him refusing to eat anything at all! Talk about from one extreme to the next...special needs parenting is most certainly just that...EXTREME!</p>
<p dir="ltr">Sam's adult front tooth (the baby one which he ground down into the gum which then had to be cut out in theatre) has been struggling to come through for some time now, you can see it sitting there in all its toothy glory just under the gum. It just can't seem to break through the gum, possibly because that section of gum was sutured up as opposed to having a "gap" where ordinarily the baby tooth would have fallen out. So that could quite possibly be the cause of his not wanting to eat. Sam does also have a bit of a crampy tummy-thing going on so perhaps even a bug in the brew...who knows? But even if it is a bug, the 6th of January is most definitely not considered "Christmas-time" still (just smile and nod, okay) so...YEAH!!! for our first illness/surgery-free Christmas in five years. Ah, as they say, celebrate the small things!</p>
<p dir="ltr">Aaaaand...another hidden blessing of special needs parenting...some time in the future we are going to get to celebrate Sam tolerating un-pureed food again (this was like the third time already LOL!) Just like we are going to get to celebrate him taking one or two unassisted steps again. What could be sweeter than living those precious moments more than once? And each time is as awesome as the first :)</p>
<p dir="ltr">Ooooooh...talking about celebrating...we have finally managed one other liquid other than warm Pediasure out of a bottle (right through the sweltering heat of Summer usually) and it be litchi juice out of a juice box! Fair enough Sam isn't so much sucking on the straw (or even closing his mouth on it) as what I am squeeezing the juice into his mouth, but hey...it's juice...out of something other than a bottle...it counts (again...smile and nod).</p>
<p dir="ltr">Happy New Year everyone...may it be a Blessed and prosperous one for us all <u>xxx</u></p>
Nickyhttp://www.blogger.com/profile/16316970339424084688noreply@blogger.com0tag:blogger.com,1999:blog-8848123426204206503.post-14987267300154811542015-12-21T08:10:00.000+02:002015-12-21T08:10:00.860+02:00Tis the season to be jolly and thankful... <div dir="ltr">
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A mere season within which to be jolly? Maybe. A mere season within which to be thankful? </div>
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Sam deals with a few more challenges than the average kid, so you'd expect me to be super aware of becoming complacent about the things he does not struggle with...breathing, sight, hearing, oral feeding, reasonable mobility (albeit it knee-walking)...but yet every couple of days the universe throws a reminder at me about the countless difficulties we do not have to deal with and, more importantly, a reminder to be unceasingly thankful for, what is to many, countless blessings. </div>
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Becoming a part of the <a href="http://danielandfriends.com/">Daniel and Friends Fund</a> was already a mind-altering revelation for me into how much more of a formidable journey many families are facing and quickly put into perspective our own challenges. But oh, the Universe was not yet done with me. Getting to know and love these families whose children battle conditions like Spinal Muscular Atrophy, Congenital Heart Disease, Spastic Quadriplegia and chronic, heartbreaking Epilepsy, where having 20 seizures a day before the clock has barely struck 10am is the norm, was not yet enough insight. No, the Universe concluded, you need to see more. </div>
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And so our paths led us to the Sive Nathi Licensed Home in <u>Blackheath</u>, a home which provides fulltime care to 40 children who suffer with severe disabilities (mostly Cerebral Palsy). Not only do these children face profound challenges each and every day, but they do so without the comfort and nurturing of being part of a conventional family. Mostly abandoned (due to the inability or unwillingness of their families to take care of them) the children at Sive Nathi Home know only the facility's carers as the consistent adults in their lives.</div>
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Of course I knew facilities like Sive Nathi existed, but to go in and see the little faces...touch a fragile little hand...smile into a heartbreaking pair of eyes, was just something else completely. Yet still, despite circumstances most of us could never even imagine, there were plenty of smiles and heartwarming clips of laughter. </div>
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Don't take things for granted...there's always someone worse off than you...you never know what kind of battle someone else is fighting - all sentiments expressed regularly, often too lightly. It's fairly easy to entertain these thoughts "from a distance" but not that easy to comprehend completely until you've had the opportunity to witness these struggles up close and personal. And, yes, I say "opportunity" because that's exactly what it is...an invaluable experience for those who occasionally find themselves wishing their lives were on a different path, to be able to surrender to some necessary self-reflection in order to appreciate that that "different path" might be one far more challenging. <br />
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Our visit to Sive Nathi is shared in more detail with quite a few beautiful photos at <a href="http://danielandfriendsfund.blogspot.co.za/" target="_blank">Daniel and Friends Fund BlogSpot</a>, but one of my absolute favourites....<br />
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Five year old Mosa...a charming young man who </div>
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enchanting little smile on the ready the moment he</div>
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spotted the camera. </div>
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#<em>lifechangingexperiences#blessedtobeapartofthis</em></div>
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Nickyhttp://www.blogger.com/profile/16316970339424084688noreply@blogger.com1tag:blogger.com,1999:blog-8848123426204206503.post-2176491678488234122015-11-19T17:56:00.000+02:002015-11-19T17:56:01.925+02:00Smurf! Smurf! Wherefore art thou Smurf... <div dir="ltr">
Sam's had quite a busy month and a bit, leaving mom little time for blogging...but thanks to my ever-handy phone <u>camera</u>, creating a timeline of the last few weeks is a delightful breeze. </div>
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At the beginning of October Sam was off on a road trip to Stilbaai to visit his Ouma and Oupa and cousins Hendrik and Boeta Dirk. </div>
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After a fun weekend of seaside walks and being kept entertained by all the goings on, one would have expected the 4 hour journey home to be filled with blissful silence? </div>
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It was instead filled with a non-stop,throat-annihilating screeching which proved distressing to the point of tears for at least one of the car's occupants (not Sam). It was not the first screeching episode of the weekend as this seems to be Sam's new chosen method of communication whenever he is unhappy about something but it was by far the most traumatic. </div>
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The following week Sam was ROCKING his new AFO's! And I say "rocking" because one of the main reasons for not doing AFO's sooner was that we were pretty certain we'd be wasting an alarming amount of money on something which Sam would regard with the same amount of distaste as he does shoes and socks. With a completely resistance-free, 8 hour long wear on just the FIRST day we are beyond impressed with how tolerant Sam is being with these "boots of hope"! It has taken him some time to get used to actually walking with them on, which is pretty understandable especially as Sam makes use of his angulated big toe to sort of anchor him to the ground, but both Cornelia (Sam's physiotherapist) and I can already see the difference having a solid base of support has made to Sam's walking. </div>
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With Sam weighing in at a cool 24kg's, which seems to be increasing almost on a daily basis, having him being able to walk independently would be an incredible blessing to both mine and Sam's physical wellbeing :D </div>
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Sam's sleeping is, again, non-existent. And not because he doesn't want to sleep, which is perhaps the most frustrating part. For some unfathomable reason, what seems like a bucket-load of mucous seems to form in his airways at night and he spends hours trying to choke his way through to some actual breathing. It has been going on since the end of September so by now, as I am sure you can imagine, we are ever so slightly sleep-deprived. </div>
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Three Saturdays ago Sam had two seizure episodes. We admitted him the following Thursday really just for observation, but when his ENT saw some fluid in his ears and an indication that Sam's sinuses might be blocked up, it was decided that a 3rd set of grommets and sinus wash would be in order. The surgery was scheduled for the Friday but Sam had an unexpectedly decent night's sleep on the Thursday already. Being "nil per mouth" from 7:30am already and only going into theatre at 2pm, Sam was such a little trooper. He only started asking for something to drink about an hour before he went into theatre. </div>
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The procedure was over in record time and Sam was monitored overnight in ICU. Again, he absolutely blew me away with how well he did with having all those beeping little gadgets attached to him, not to mention tolerating a drip in his hand (!!!) which has always been a HUGE no-no and is usually removed within an hour due to him bashing the bandaged hand to the point that the drip in any case no longer works. </div>
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As with most of Sam's ENT procedures, a little snottiness can be expected afterwards, more so this particular time with him having been snotty in any case beforehand. Surprisingly enough though, he had another decent night's sleep the second night...despite trying several times to sleep on his stomach, monitors or not. But his very first night back at home and we were drowning in mucous again and apnoeaing a-plenty. The only explanation it seems is that there is something in or around our home to which Sam is having some sort of respiratory reaction...now to figure out what. Process of elimination is not working out that great hindered even further by the seasonal change which, this year, seems to have affected many.</div>
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Sam and his never-ending worry that the ducks at the local pond are just not being fed enough, just as worried (it seems) as to whether they are all safely where they're meant to be as he attempts to do a headcount of all couple of hundred of them...on just two unique little hands. </div>
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Goofing around with his Big Sis xxx </div>
Nickyhttp://www.blogger.com/profile/16316970339424084688noreply@blogger.com0tag:blogger.com,1999:blog-8848123426204206503.post-90051342450194188482015-10-07T23:15:00.002+02:002015-10-07T23:24:22.951+02:00When you're missing a part of you... <div dir="ltr">
...but don't know which one. </div>
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It's not like you're consumed with sadness or given to overwhelming bouts of hopelessness, although feeling hopeless certainly does raise its ugly head every now and again. It's not that you no longer find joy in your life or fail to appreciate the wonderful blessings that come your way, in fact sometimes you now find joy in things which before might not even have held your attention for a second or you'd have taken for granted instead of cherishing as a blessing.</div>
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You still laugh, still love and perhaps live life more passionately and with more purpose than you did before..."before" being life prior to becoming the parent of a child with special needs. You're a stronger, more determined, more resilient, more vulnerable, more giving, more humble, more thankful, more intense YOU! So much MORE of who you were before. But yet, there is still some part of you that is missing, perhaps a very small part of you but which absence occasionally ignites a feeling of restlessness and anxiousness. </div>
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You're fine. Really. Not surrendering to the likes of a diagnosis or three...not completely resigned to sacrificing the dreams you had for your child/children, but <em>real</em> enough to know those dreams might require travelling a path you had not anticipated. But still, you find joy therein as a new path brings people, friends, family into your life you might never have had the pleasure of knowing. You're fine. Really.</div>
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And then, as you spend your day posting your support in raising awareness for your child's <em>"third diagnosis"</em>...the one which blindsided you so after having made peace with the first two...peace which had taken years to revel in and find hope in...it hits you. You stare at your screen, you type the words, you acknowledge your tormentor...the missing part of you...the part from which you used to draw unfaltering confidence that it was going to be okay.</div>
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Nickyhttp://www.blogger.com/profile/16316970339424084688noreply@blogger.com0