X is for X-Ray #AtZchallenge

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So X-ray might not be original, but I don’t care. Some days I wonder how it is that Kennedy doesn’t glow. I know the exposure levels are ‘minimal’. I remember the lectures. I remember the exposure tags when I worked at the vet’s office years ago. But Kennedy has had so many x-rays in her short 7 year life. They started around the time she was a year old. Some X-rays were because of her lungs, and her eventual diagnosis of CF. Others were for her hypotonia and the possibility of one leg being shorter than the other. Or her tibial torsion. And let’s not forget the reflux…oh, and the dysphagia where she had painful swallowing (which we eventually learned was from her inability to chew properly)…which meant about 5 times drinking and eating barium-laced substances and eating in front of a fluoroscope. She has spent more time in front of X-rays, CT-scans, fluoroscope’s in her 7 years than I have in my entire life. I’m seriously surprised she doesn’t glow. *~*~* The A-Z Challenge has over 1900 participants, all blogging from A to Z this month. Check them out and see if you can’t find a few new favorites!! Read more »

If We Ignore It – Will It Ever Go Away?

We have a lot on our plate. Something is bound to slip. Yes, we try to live beyond our labels, but it’s only through treatment of those labels that we manage to survive and keep going. But really, with a child as unique  as Kennedy, something was bound to slip. Or a couple of somethings. The one thing we’ve let slide.  The one that’s slipped through the cracks. Is the one that used to consume me. Despite the CF, the anger issues – this one thing consumed me. Physical Therapy, taping her legs, taking her to the orthopedist. Tibial torsion – complicated by hypotonia.  Pigeon toes to the layman. As you can see by the above picture (it’s not the best picture of it, but all my others are lost in files) it used to be severe.  Her right foot in casual standing turned all the way into her left. Her left turned in a wee bit too. Every time we went to the ortho is was pushed off and shoved aside.  The ‘age of correction’ (i.e. braces or surgery) got older and older (we started at 4, then 5, then 6, then 8) until I put ortho’s at the top of the list of doctors I didn’t like or trust.  It got to the point where I ignore it. We were told that it would “self-correct” that her muscles would naturally pull them out as she got older. When we pointed out the fact that she has truncal hypotonia so the muscles weren’t strong to begin with we were dismissed and told “I wouldn’t even do physical therapy, it’s pointless.” Um…WHA? Now she is 6 – one of the ages – and what’s it like now? There’s been some self correction. Not enough.  We’ve ignored it to a point. With everything else going on, it’s easy to ignore. Until a walk around the zoo gets her ‘tired’ very fast…and when you look down, the feet are turning in more and more the more tired she gets. It’s still a problem for her. She doesn’t have the stamina of her friends – and I’m not talking the lung stamina – I’m talking the muscle stamina. I’m tired of being dismissed by ortho’s. But when do we attack it again? Or do we? Do we keep ignoring it and hope it goes away?   Read more »

by Sarah Cass

Multi-published author. Mom of 3 special needs kids. Wife to 1 good man.
Redefining Perfect every day.

She looks fine to me…

*Otherwise titled “The post in which I piss people off.” From the time our troubles started, from the time we first realized there was just something ‘off’ about Riley.  From the day We realized Angel’s torticollis was more than just a lazy neck and a heavy head.  From the day we realized Angel’s cough was going for a month and showed no signs of letting up. From the first time Angel intentionally injured herself. From the first toys Riley lined up.  Every day, every night, every in between we are aware.  We notice when Angel runs out of steam before she’s played for ten minutes.  We notice when Riley is starting to retreat into her shell. When we’re in danger of a meltdown of epic proportions.  In danger of a night of a screaming, pouting, angry Riley. We notice it all. We see it in the every day. We see it in the little things. Every action, every reaction. It’s a part of our lives.  It is our every day. Then you come along and say “But she looks just fine to me.”  Or “She doesn’t seem autistic.”  And of course the “She doesn’t act sick.” I know you mean well.  Really, I do. But I hate it when you say that. It’s like you’re belittling our every day. The hours at doctors and specialists.  The hours calming and refocusing an over-stimulated child (longest meltdown stands at 36 hours).  The hours a day hooked up to machines to live every day.  The way I lay awake at night listening to labored breathing. Check temperatures every time we feel a little warm. I know you don’t mean it this way.  I know you just mean to say that despite their troubles they look healthy and happy.  That unlike other children with special needs it’s not a visible/noticeable difference. But I hate it. Just say they’re beautiful.  Say they have a great smile. They look like they’re having a blast. Don’t contradict what we KNOW.  Riley does have autism (no matter how mild). Angel does have CF, and right now she is sick (and we spend every day wondering just how badly it’s holding on). It is our every day. We try to live life beyond our labels – and we only succeed by accepting them and integrating what they mean into our lives. Read more »