by Sarah | Sep 27, 2012 | All About Kennedy, Cystic Fibrosis, Failure to Thrive (FTT), Special Needs
[flickr id=”8012257268″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”left”]Since birth the girls have been tiny. Hell, all my kids rock the bottom of the growth chart. Always. It’s in their genes. Up until 3 kids & a hysterectomy totally made my body go haywire I had insane metabolism. I remember hours spent in my pediatrician/allergists office playing with the toys he had on display while he discussed my growth chart (and how I was well below 0%tile) with my mom.
It’s a familiar theme.
One that in standard circumstances is a concern, but not panic inducing.
We eat.’
Tons of food.
We just don’t gain.
Metabolism rocks until it actually works against us. And trust me, as a teenager being asked if you’re anorexic when you eat like a horse is NOT fun. It really sucks.
But this goes beyond personal suckage.
When you combine Cystic Fibrosis with the words Failure to Thrive.
You get a heap of shit-panic-stuff-the-kids-faces-until-they-can’t-eat-any-more to deal with.
Back in June both my CF kids rocked the weight chart. For the first time ever the nutritionist said “we dont’ have anything to worry about here, keep doing what you’re doing. They look great.”
For the first time in her entire life Kennedy looked AMAZING. In the 10th%ile for BMI 10th! Dude, in this family that is some serious awesomeness. Worth celebrating.
Now, just 3 months later we’ve stalled. Flatlined. Kennedy gained almost nothing in the past 3 months. Her BMI is back at the bottom, in below the 5th%ile. Amazing how fast the growth chart swoops up to wipe away previous progress.
Again, in an average situation we’d not panic. But now we have 2 months to get meat on her bones.
2 months. Make sure at school she’s allowed extra snacks, extra time at lunch to finish. whatever it takes.
If we don’t put meat on her bones, they put a g-tube in her belly.
In a society where everything is marketed to keep obesity at bay.
I have to find ways to put weight ON my kids. Lots of it.
So that we can avoid the g-tube. The g-tube is not welcome here.
by Sarah | Sep 5, 2012 | All About Kennedy, Anger Issues, Special Needs
[flickr id=”6936627216″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”left”] *Side note – to date this is my absolute favorite picture of Kennedy. 😀
When you first meet Kennedy, and often for many meetings after, you see the sunshine.
We once pegged her as the ‘smilingist’ baby ever.
She has it all.
The eyes that melt your heart with their bigness, their brightness, their expressiveness.
The cheeks that run in the family – from birth until teens just adorable, chubby, and pinchable.
The silly grin. It lights up her face, or quirks just a bit to make you forget the anger and lean to laughter.
Don’t get me started on the baby-doll voice. Cupie doll, sweet and tiny.
[flickr id=”6936590242″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”right”]No one can believe it.
Not unless they ever see it.
No one understands it.
The completely opposite.
Desperately different.
Achingly painful.
Underbelly of that sunshine.
When we mention the way she can burst your eardrums we get the “You’re kidding, right?” look.
When we mention the temper tantrum she threw – they think we’re being silly. We don’t know what a real tantrum is like, what real anger is like.
But they weren’t there to watch her slam her head into the corners of walls, into the hardwood floor, into our faces.
They aren’t here to see her intentionally dig at her nose until it bleeds so often she’s building scar tissue.
[flickr id=”6936587076″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”left”]Some days I feel like people look at me like I’m making it all up.
Some days I wonder if maybe I’m overreacting to the anger.
That on top of everything else this one thing is unbelievable.
Because she is sunshine.
With every heart-wrenching smile – she is sunshine.
When I am at my angriest she can make me lose hold of it and smile.
[flickr id=”7082668411″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”right”] But she gets angry.
Mind-numbingly, ear-splittingly, heart-wrenchingly angry.
Things are better these days.
A little.
At least she isn’t trying to break our noses on a regular basis.
But her teachers notice.
It’s out of line with “normal” temper tantrums.
And for this – for this I don’t know how to help her.
Everything else has a solution.
A therapy.
A doctor.
A…something.
This?
Most of the time, I don’t know how to handle this.
I let the flame burn out.
And wait for next time.
by Sarah | Aug 29, 2012 | All About Kennedy, All About Learning, Anger Issues, Special Needs
[flickr id=”7665946732″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”left”]The day before school started I got an email from Kennedy’s teacher.
After reading the excited, bouncing off the email, energetic note of welcome before school even started I took to twitter and commented that Kennedy had a “perky” teacher and that I might be a wee bit frightened.
The feeling continued when the first day of school came with another bouncy email and a mass of papers to fill out about Kennedy – her personality, strengths, weaknesses, etc. More than any of my kids have brought home from any teachers.
Of course I got to go to Kennedy’s “meet-the-teacher” night while Erik went to Molly’s – so I got to meet the bubbly teacher myself. She didn’t disappoint with her very friendly and enthusiastic intro into the world of 1st grade.
I think I became a little more frightened.
Then yesterday happened.
The first time Kennedy’s notorious temper reared its ugly head.
I knew about it pretty darn quick. The teacher emailed me withing an hour or so of it happening. We communicated through the day, and I was able to deal with it when Kennedy got home.
I was scared of the perky, bouncy teacher…until I realized that it could lead to a year of excellent communication and possibly a better way to deal with Kennedy’s anger issues.
Embrace the perky.
I know I will. 🙂
by Sarah | Aug 13, 2012 | All About Denver, All About Kennedy, All About Learning, All About Molly, All of Us, Blogging Life, Clever Girls, The Teenager
School starts tomorrow for my kids. We did the school supply lists provided by the teachers. Pencils, pens, notebooks & more. Spent hours in the store fighting the crowd of other parents and realizing that the store was sold out of quite a few needed items. In the end, headaches abounded and we headed home.
Of course, that only got us the necessities the SCHOOL declared necessary.
I still had three kids to make happy. What makes kids happy for school? Getting all the clothes considered ‘cool’. The most important requirement for a new school year.
Which I find hilarious considering at Christmas they all sneer at the ‘clothing box’ shaped presents. What is it about the new school year that makes buying clothes more than acceptable when any other time you dare to buy clothes you’re the devil?
Ah well, my favorite part about shopping for clothes that we don’t have to fight the stores. The teenager doesn’t want me to ‘help’ him shop for nothing, my girls are chaos in a store and I know their sizes.
Online I can find great deals, clothes on clearance that have been wiped out at the stores (believe me I’ve tried).
I can get ‘cool’ clothes for my kids that they pick out (like the “Awesome” shirt above – tailor made for the teens level of attitude and confidence…and the adorable dress over here -> that fits with my girls obsession with dresses, both at Old Navy).
So easy, convenient and doesn’t waste my gas driving into town for a stress filled afternoon of attempting to shop with a teen and two girls – one of whom gets over-stimulated in our backyard and is oh-so-fun when we get to crowded stores.
My kids are happy. I’m far less stressed, and saved a few bucks.
No wonder I’m addicted to the internets 😉
*~*~*
I was selected for this opportunity as a member of Clever Girls Collective, and the content and opinions expressed here are all my own.
by Sarah | Aug 9, 2012 | All About Denver, All About Erik, All About Family, All About Kennedy, All About Learning, All About Me, Cross Country, Friday Fragments, Random, The Teenager
[flickr id=”7665949676″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”left”]I’ve been having a good week…month…year. Whatevs, it’s all good. Okay, so there’s been ups and downs, but as I said recently I feel like I’ve hit my prime.
But for whatever reason my mind can’t wrap around a cohesive lengthy post today so you get the ever-marvelous bullet list of awesome.
- School starts in less than a week. Three kids. Gone all day. Makes me salivate at the thought of all that might get accomplished.
- Erik is doing a lot better. We’ve had a change in diagnosis & treatment plan, and things are looking up. Hopefully soon we’ll dive more into it – when he’s ready.
- In case you missed it – I’m being published. I so cannot wait until February to cross that sucker off my 45X45 list.
- The teen is entering high school. Honestly, not sure if this goes on a list of awesome b/c it sort of freaks me out – but it is happening. He’s in JV Cross Country practices now.
- We’re going to the State Fair on Monday. I’m actually pretty excited for this. Been a long time since I’ve done this.
- Erik & I have started walking together every night. It gives us added exercise & some time for just the two of us.
- I still have this 5k coming up but with the heat I have lapsed on training. Starting again real soon because time is running out (pardon the unintentional pun)
- Did I mention school starts soon? No? Well, it DOES.
- Oh, make sure you come by here tomorrow…I’m having a fun, flirty, sexy giveaway you do NOT want to miss.
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?
