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.
*~*~*
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!!
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?
by Sarah | Jul 8, 2010 | All About Kennedy, All About Molly, Autism, Crap, Cystic Fibrosis, Hypotonia, Russell-Silver Syndrome
*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.
by Sarah | Nov 11, 2009 | All About Kennedy, Cystic Fibrosis, Failure to Thrive (FTT), Hypotonia, SID, Speech, Therapy
Angel had her go-round with the Developmental Pediatrician on Monday. Avoiding discussion of the horror of a day surrounding said appointment, I’ll get right into the actual facts and (lack of) diagnosis!
The short of it – we may never know what causes our little one to struggle. It may be that she was born so early, or just a quirk in her brain that makes her crooked physically and mentally.
However, that won’t stop us from a) looking for a cause and b) getting her all the help she needs.
To that end, the Ped did see her unevenness in her gait (we walked and/or ran down a long hall to display), and tone. She again listened and heard all I had to say on everything we’ve been through the past couple of years with her. She gave advice and took a good look over her, just as she had with Riley.
Her solutions here were a little more complex, but not by much.
1. We are doing an MRI on her brain. Taking a good hard look to be sure that there is nothing specific or noteworthy that could have caused this.
2. We are doing a full-run genetic test. AFter a pre-approval by her dual insurance plans, of course.
Why are we doing these? Because the ped recognized that almost as much as we want to learn the HOW’s of Angel’s issues…we also would like to know WHY’s. She said that while it is likely just her early birth date, we should exhaust the remaining bit of question.
And onto the HOW’s…
1. Restarting Speech Therapy
2. Restarting Occupational Therapy
3. Having a psychological exam done to determine need for Behavioral Therapy
4. Returning to the Feeding specialist for monthly visits
5. Restarting Physical Therapy
All of this will be done at Riley Hospital, and all should be covered by insurance (if not primary, then secondary) as part of her diagnosed issues. Thank goodness for Indiana’s wonderful Special Needs insurance (now if only we could get Riley qualified for it *sigh*)…it has saved us more than I can ever say.
And that is where we stand now. Therapy, therapy…and more therapy. I’ll be doing a bit more traveling once it all gets started…but if it helps, it’s all worth it.
by Sarah | Jul 16, 2009 | Hypotonia, Terminology
Today in email I was asked by a mom with a new diagnosis of Truncal Hypotonia to explain it in layman’s terms for her. She’s new to all of this and is frightened – and I remember that feeling well. It’s been ages since I did a Terminology Tuesday, and today is not Tuesday, but I thought it would make a great post, since I display clearly on my site that Angel has this and what it is may not be clear. I’ve already answered this directly to that mom in email, but I’m making a post now too 😀
Hypotonia is a muscular condition. It means that the muscles do not have the tone of normal muscles – they aren’t as strong or flexible. This is often characterized by a rigidity. In our case, even changing a diaper caused discomfort for Angel. She had Torticollis (definition on Tues.) as a baby, then her arms were stuck in the airplane reflex (arms raised tight and bent at her sides) until we finally got her crawling – and even then we could not get her to use her left arm to reach for anything.
Truncal means the torso. The hips/stomach/chest area is the weakest. The trunk supports us in just about everything from sitting to moving and walking. Angel’s hips and chest are her weakest area, most especially on the left side.
I hope this helps! I’m off to research another disorder to gain an understanding of it before I email this mom back!!
*~*
by Sarah | Jan 21, 2009 | All About Kennedy, All About Me, Crap, Hypotonia
Which is really hypocritical of me because I constantly give Archie grief for blaming himself. It isn’t his fault…and it isn’t my fault…and our brains know this…but our hearts bleed.Â
His heart bleeds because Brandon was the ‘perfect’ child. He was never really sick (a minor bowel issue until 3yo, but otherwise) – Brandon is neurotypical. ARchie is not biologically his father. Our two special needs children are his biological children. He draws the line of coincidence and though his head tells him that it isn’t his fault…his heart aches and bleeds thinking it was somehow his fault – his genes that did it.
For me, it’s an old vice. One that still haunts me…and one that I abused when I was pregnant…not with Brandon, and not with Riley…but with Angel…
I smoked until I was five and a half months pregnant with her. In my (very weak) defense I hadn’t the foggiest idea I WAS pregnant (seriously I REALLY had no idea…both me and my OB were shocked)…but I was, and I did.Â
I had my first cigarette at 11. At 16 I really started smoking – and started hard with reds. I smoked off an on for years. I’ve always had a knack of just deciding one day that I’d quit and that would be it – for months and years at a time. When I started drinking (at 18), I’d almost always have at least one cigarette when I drank – which worked since it was only once every few months. But I was a horrible social smoker…when others smoked, I joined. Working in food service – a LOT of food service workers smoke…so when I started waitressing after Riley was born, I started smoking – like a frickin’ chimney.Â
Truth be told, with all three of my kids I smoked right up until the day I found out I was pregnant. Brandon I stopped as soon as I saw the test – and never looked back, in fact they made me sick. With Riley, I quit before I knew I was pregnant…they just made me nuts, so did alcohol (not that I was ever addicted to that).Â
But when I got pregnant with Angel, I had no idea I was pregnant. I was using three forms of birth control (four if you count the new-parent exhaustion-created near-abstinence). I was working at Bob Evans (yum) and smoking like a chimney with my friends and coworkers.Â
I’ve always felt guilt about it – but pushed it aside as best as I could.Â
But when I hear the doctors say “Something happened neurologically while she was in utero. Something minor, but enough to cause this…” As they have since we first started looking for reasons for her left-sided weakness. Every time I hear “neurological event” and “in utero” – I blame myself.Â
And my heart bleeds.Â
And bleeds…
And tonight…my heart bleeds…and again I blame myself…
So X-ray might not be original, but I don’t care.
