Why


Lark was diagnosed with PFFD before even being born. Other blogs following amazing children with PFFD gave me hope and insight when we first found out. I thought I would try one out for myself. Not only as a way to share Lark's progress but also to possibly be helpful for anyone else dealing with the same thing.

Here is Lark's story ...

Tuesday, May 22, 2012

You Go Girl!

One question I asked everyone I could when we found out Lark had PFFD was would the PFFD delay the physical milestones infants/toddlers/kids usually hit. Everyone told me no and so far they have been right! This little girl has some serious strength and has already started to roll over and tries to sit up by herself. Her new favorite thing to do lately is playing in the Jumperoo. 

You go girl!


Thursday, May 17, 2012

B

I love this poem by Sarah Kay. 
You can also watch her perform it here.

 If I should have a daughter, instead of mom, she's going to call me Point B,

because that way she knows that no matter what happens,
at least she can always find her way  to me.

And I am going to paint the Solar Systems on the backs of her hands,
so she has to learn the entire universe before she can say 'Oh, I know that like the back of my hand'

And she's going to learn that this life will hit you,
hard,
in the face,
wait for you to get back, just so we can kick you in the stomach
but getting the wind knocked out of you is the only way to remind your lungs how much they like the taste of air.

There's hurt, fear that cannot be fixed by band aids or poetry
so the first time she realizes that wonder women is not coming 
I'll make sure she knows she does not have to wear the cape all by herself
because no matter how wide you stretch your fingers,
your hands will always be too small to catch all the pain you want to heal

Believe me, I've tried
And baby, I'll tell her, don't keep your nose up in the air like that
I know that trick, I've done it a million times
You're just smelling for smoke so you can follow the trail
back to a burning house so you can find the boy who lost everything in the fire
to see if you can save him

Or else find the boy who lit the fire in the first place to see if you can change him
But I know she'll anyway, so instead I'll always keep an extra supply of chocolate
and rainboots nearby.

Because there's no heartbreak that chocolate can't fix
Ok, there's a few heartbreaks that chocolate can't fix
but that's what the rainboots are for because rain will
wash away everything if you will.

I want her to look at the world through the underside of a glass bottom boat
To look through the microscope at the galaxies that exist on the pinpoint of a human mind
Because that's the way my mom taught me.

That there'll be days like this
that there's be days like this my mama said
When you open your hands to catch, I wind up with only blisters and bruises
When you step out of the phone booth and try to fly

And the very people you want to save are the ones standing on your cape
When your boots will fill with rain and you'll be up to your knees in disappointment
and those are the very days you've all the more reason to say thank you

because there's nothing more beautiful than the way the ocean refuses to stop
kissing the shoreline no matter how many times it is sent away

You will put the wind in winsome ... losesome
You will put the star in starting over and over

And no matter how many landmines erupt in a minute
be sure your mind lands on the beauty of this funny place called life
And yes, on a scale from one to over-trusting, I'm pretty damn naive

But I want her to know that this world is made out of sugar
It can crumble so easily
But don't be afraid to stick your tongue out and taste it
Baby, I'll tell her, remember your mama is a worrier
and your papa is a warrior.

And you're the girl with small hands and big eyes who never stops asking for more
Remember that good things come in threes and so do bad things and
always apologize when you've done something wrong

but don't you ever apologize for the way your eyes refuse to stop shining
your voice is small but don't ever stop singing.

When they slip you a heartache,
when they slip war and hatred under your door and offer you handouts on street corners
of cynicism and defeat, you tell them that they really ought to meet your mother.
 

Wednesday, May 9, 2012

Little Miss 3 Months

Lark is already 3 months! 
Where does the time go? 
She smiles all the time and is a joy baby!


We recently had a check up with our pediatric orthopedist and physical therapist here at home. Nothing much new is going on with Lark's PFFD. There has been nice growth on her femur but her hip still isn't looking too great, though she's still so little. All in all nothing new was discussed. Physical therapy here at home has been going well. She's not crazy about it but deals with it pretty well. We won't see her orthopedist again till after we meet with the other out of state doctors this summer. I'm anxious for those appointments. I'm ready for some type of plan.


Above is the x-ray taken at our appointment. It amazes me every time how different her left side is compared to her right.