Go Baby Go

Cruising

There is no stopping this little one!

Wonder Woman

Happy Halloween!

Learning to Stand

On the Go

Little Miss 7 Months

Lark has been one busy gal! 

She's been learning all kinds of new tricks in the last month. 

She has learned how to sit on her own, crawl and get into everything.

All with a big smile on her face!

RIAO Visit

We had a great visit with all the folks at the Rubin Institute for Advanced Orthopedics in Baltimore. First of all Lark was a champ while traveling. No tears or melt downs on the flights just sweet smiles for everyone. She was awesome, like always! 

 Everyone at RIAO was great! We enjoyed meeting all the staff but also all the different families and hearing all of their stories. It is so comforting to meet others that have been down the road we are just now beginning. 

On the scale of things Lark has a severe case of PFFD or CFD as RIAO calls it. She is projected to have a 33 cm difference which is around 12.9 inches. Even with a severe length difference her joints are in pretty good shape, which is wonderful.  It is still hard to see what her hip is actually doing, we do know that she will need the super hip surgery.  Below is a rough timeline of what Lark's possible journey could be if we went down the path of Limb Lengthening. 

AGE	PROCEDURE	PROJECTED GAIN
18 months - 2 years	Super Hip Surgery	2 cm
3 - 4 years	First lengthening with an external fixator	7 cm
8 - 10 years	Second lengthening with an internal fixator	7 cm
11 years	Shortening of her right leg (Epiphysiodesis)	5 cm
13 - 14 years	Third lengthening with an internal fixator	8 cm
16 - 18 years	Fourth lengthening with an internal fixator	The difference

Above is the x-ray that was taken at our appointment with Dr. Standard's drawing of what he thinks is going on with Lark's hip.

 I think the best thing to do is to take everything one step at a time. First being her hip. We will visit Dr. Standard and his crew at the beginning of the year to x-ray Lark's hip again and get a plan in place. All in all I think we had a very good appointment and I feel like some of the questions we had were answered. We also got a very comforting feeling from RIAO, which is a very important thing. 

  

Lark in our hotel in Baltimore 

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.

Birth

Hands down one of the most nerve racking moments of my life were the short moments before Lark was born. The fear of the unknown was about to become reality. Answers to questions we had had for months were fixing to be answered. We had so many months to prepare for her and what PFFD would bring to our lives but in that moment a flood of emotions hit me ... I was straight up scared!

I will never forget the look of relief on everyone's faces when she came out. I too felt like I could breathe again. She was here and that was all that mattered! My doctor studied her very carefully before laying her down on me. There is no moment in life like the moment new life is laid upon your chest. I think it's one of the most beautiful moments between a husband and a wife and a mother and a child. The joy and love is overwhelming. 

Because we knew a head of time that Lark had PFFD there was an extra team of nurses in the room to examine her. They quickly took her and began their evaluation. A good team of doctors can make a world of difference when going through anything medically. My OB and the other doctors within the group are amazing. She is amazing! I will forever be thankful for her attentiveness and kindness throughout my pregnancy with Lark.

Before the nurses brought Lark back to me my doctor simply said "just hold her for now, don't look at her leg, just hold her." Now of course you know all I wanted to do was remove that tightly swaddled blanket and check out the situation but I didn't and I'm glad that I didn't. After all the nurses and doctors had left the room I finally did look. With my mom and mother-in-law next to me I unwrapped  my sweet baby girl. Looking at her, her leg and hip looked like I guess I had imagined it would but it was a tough moment for me. Nothing can truly prepare you for the reality of your child having a disability of some sort. Yes there are worse things out there, way worse but any type of disability is hard and it's ok to be sad that your child will face things you wished they never would. It didn't take long for all of us to wipe our eyes and move along because how can you do anything but smile when you are looking at this loveable face.

Consuming

It is safe to say that the weeks following Lark's diagnosis I completely consumed myself with spending any and all extra time I had on the computer researching PFFD. There are still days where I let myself be consumed by it and I'm sure there will be many, many more to come. I am thankful that we learned about Lark's PFFD while she was still in utero. I think it would have been very hard to not be prepared for it though at the same time it gave us months to think about it. At times I think the fear of the unknown took over the excitement of being pregnant. I found and still find so much comfort in other people's blogs. To see completely normal, happy and beautiful children thriving with this difference makes things so much easier. Plus the strength of the parents is inspiring. From other's stories we can kind of get an idea of what Lark's path might look like though there are several ways it might go. Hopefully over time that path will become clear to us.

Finding Out

Like most 20 week ultrasounds the day of is filled with such excitement and nervousness. This is true whether it is the first baby or your third. Lark just happened to be our third! 

The appointment started out just like all of them do. Which to this day I think sonograms are so cool and the technicians are awesome to know all that they do. Plus our tech is the best, she's so sweet. My husband, the tech and myself were in full chatty mode, laughing a lot and trying to figure out if baby was a boy or a girl. Of course they always leave that to the last thing they do.  All of a sudden she got very quiet and we quickly noticed that something wasn't right. The tech was measuring the baby's legs over and over again. She very calmly informed us that her measurements weren't matching up when comparing the baby's legs but then very quickly said it could just be an error on her part and would have the doctor check it out. She then informed us that we were having a girl! 

As the tech left the room we laughed about the fact that we were having a girl. Our first daughter! Oh the craziness that her and her brothers would bring!  Then I quickly looked at my husband with a "but what the hell is up with her leg" look. It was a mix of joy and freaking out all at the same time! 

The doctor came in and rechecked everything. He then confirmed that baby girl's left femur was indeed measuring smaller. It was 1/2 the size of her right. It was also very obvious to us once he pointed it out. He then also informed us that he had no clue why it was that way. He had never seen something like this before. Everything was perfect outside of one bone. He sent us out the door with a lot of unanswered questions but I think we left him feeling the same way as well. 

Two very long days later we were told that baby had PFFD and so the journey began.

Above is one of the first ultrasound images of Lark's leg difference.

What is PFFD?

The short version:

Proximal femoral focal deficiency (PFFD) is a rare, non-hereditary birth defect that affects the pelvis, particularly the hip bone, and the proximal femur. The disorder may affect one side or both, with the hip being deformed and the leg shortened.  (Thank you Wikipedia) 

In Lark's case the PFFD effects her left femur and hip.