by Sarah | Apr 27, 2013 | All About Kennedy, Cystic Fibrosis, Failure to Thrive (FTT), GERD, Hypotonia, Special Needs, Tibial Torsion
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.
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by Sarah | Jul 16, 2012 | All About Kennedy, Hypotonia, Special Needs, Tibial Torsion
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?
So X-ray might not be original, but I don’t care.