Little Miss 5 Months

Count down to Baltimore has began! I'm excited and nervous all at the same time. I will post how everything goes after our visit! 

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!

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.

 

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.

Scottish Rite

So a couple of weeks ago we packed Lark up and headed to Dallas for our first visit with Scottish Rite. Scottish Rite is a children's hospital specializing in pediatric orthopedics. Check them out here. What a cool place! The staff and doctors were all very nice and the process was very simple. First off Lark had to get an x-ray done. Afterwards we meet with the orthopedic surgeon in charge of prosthesis. No matter what path we take Lark will have to use a prosthesis to learn how to walk. Most likely a Equinus Prosthesis. Larks's foot would just slip into a base and then a prosthetic foot is attached at the end of the prosthesis. After talking with him we went over and talked to another orthopedic surgeon whom specializes in limb lengthening. Overall they feel like Lark is not a good candidate for limb lengthening because of how large her discrepancy is. They suggest prosthesis management instead. More specifically a Symes Amputation with Knee Fusion. A Symes Amputation consist of removing her foot but leaving the heel pad there and then fusing the knee bones together to create one long bone. Which is a lot to think about. The good thing is we have some time before we have to make any decisions. We will visit Scottish Rite again during the next 6 months to discuss Lark's first prosthesis. 

We are also set to visit both the International Center for Limb Lengthening in Baltimore and the Paley Advanced Limb Lengthening Institute in Florida this summer to get their feedback. I'm interested to see what the next months of appointments hold for us. I just want to make sure we get all the information that is available to us so that we can make the best choices for Lark.

A Visual

This picture was taken a few weeks ago but I wanted to show a visual of what Lark's leg difference looks like.

Tiny Femur

Last week Lark had her first x-ray. The discrepancy of her femur is larger than we had thought from the ultrasound images while she was in utero. It's crazy to actually have an image of what everything looks like inside of her body.

We also had a meeting with Scottish Rite Hospital. Very neat faculty with an awesome staff. More to come on that later though.