Here we go again

I have neglected this blog for close to 3 years!
Neglecting it because we have been busy living life and trying not to let hip dysplasia take any more of our days...
Well, here we are.
In a nutshell...
Our beloved Dr. Segal has moved. We have a new surgeon at PCH. Lucy needs a femoral osteotomy.

YEP.
Lots to take in.
I haven't posted too much about it on Facebook since talking about it makes it a little too real... but tonight, it's real no matter what.
Tomorrow at 7:30 is surgery.

There are a lot of unknowns... cast? Maybe. More than the femoral osteotomy? Maybe. He won't know until he gets the dye in and checks out her hip... So, for a control freak like me, having no real plan is KILLING me.
This afternoon I got a phone call from our first surgeon, Dr. Segal. He wished us luck tomorrow and answered a few questions. Can I just say that there are certain people who just enter your lives, change it for the better, and you just have a special bond? That's us with Dr. S. My heart hurts thinking of being at PCH without him.
Now, our new surgeon is Dr. Peter Masso. He came from Shriners on the east coast, and so far, so good. He seems like a good guy, and an experienced surgeon. He sure has some big shoes to fill, and he better get this hip fixed!
There's so much I could say, so much to get out...but, I have to be awake at 3:45 am and I am needing some rest. I have to be prepared to send my beautiful girl off for the 4th time with someone who is going to put her under and perform surgery. Makes me ill thinking about it, but I know it's what is best.
Honestly, this time I have been fairly calm... The day of the appointment, I lost my mind a little, but I just know it's all of the prayers that we are getting from literally around the globe! I feel them! I honestly do. I appreciate every single text, call, everything. I even came home tonight to a gift bag for Lucy on my front door step. I feel the love and prayers, and it means the world to our family!

I will post after her surgery tomorrow.
See you on the other side...

Her left femur... notice how it's not pointing inward like the right side? 

SO special to spend this spring break week with her friends. We have the nicest people in the world to support us!

Had to take this. I am going to miss this the most in the next 8 weeks. GOSH I LOVE THESE TWO SO MUCH!!!!!!!

This week we got all of the jumping out that we could!

Let's do this, TEAM LUCY!

Supporting her sissy

So hard for me to send this perfectly happy and healthy kid in for surgery. One look at her x-rays and it's a no brainer, but seriously!? She's a wild monkey!

At dad's work picnic

Reading HOPE the Hip Hippo book trying to prepare

We had her preschool friends over for movie night! 

Daddy daughter dance. These two mean the WORLD!!!!!

Represent!

Lucy's preschool buddies

Last day of freedom

Besties

Look at all the awesome kids that joined us to celebrate Lucy and wish her good luck. We are SO blessed to have the nicest people surrounding us!
The BEST family. School. Teachers. Friends. Kids.

Yes, this sucks, but if we have to go through it, there isn't one thing I would change about our amazing support system. These awesome moms have our meals covered until May!
BLESSED beyond words.
WE LOVE YOU!!!!!!

Together we can, Together we will!

Happy Summer! 

Unless you live in Arizona, then you are melting right along with us at 115 degrees today!

We have been swimming almost every day to try to stay cool, and Lucy has become quite a little fish.  She has graduated from her first level of swim class, and just comes alive in the water.  

Wanted to share an amazing video made by a friend, Mrs. Gina Jay, founder of One Hip World.  Lucy and Lily are in it, and it's amazing!  I will warn you, it's a total tear jerker… to see all of these sweet little faces, and know the suffering that they have been through… it just reminds us of why we need to keep fighting and why we spread awareness about hip dysplasia.  

Here is the video: 

Pretty cool, huh?!  

Since I haven't posted for awhile, I thought I should tell you that we are about to wrap up 2 years of physical therapy.  Wrap up, as in go to monthly or bi-monthly visits.  Not sure what we will do every Monday morning without our Miss Hilary!

Lucy also was referred for custom orthotics.  Her previous inserts weren't working with her severe ankle pronation.  We were referred to a wonderful place, Orthotic Specialists here in Phoenix.  Ms. Barb, the owner, is truly a gift.  A gift to her industry, a gift to parents, and a gift to children.  Meeting a person like her, who has so much love and passion for what she does, truly restored my faith in people.  A real blessing.

Barb taking a cast mold of her foot.  You would think she would be afraid of a cast, but no.  She thought it was a princess slipper!

Ms. Barb.  You're the bomb!

The reason she needs custom orthotics.  This is after a year of wearing arch supports.  Her ankles just roll in :-(

Our new HIP shirts!!! (The band-aid on her chin…all drama)
Order your cool shirts HERE

YAY for my baby!  She graduated swim!

Watching Barb in the lab trimming them down to fit

Here they are… HIGH arch on these puppies…
She chose blue since blue is 'my favorite color EVER!'

On our little vacation to the mountains!

Her dream has come true

Best. Day. Ever.  Ariel is her favorite!

My two slices of perfection

Doesn't everyone wear a crown to physical therapy?!

I also have to share.  On a hip group that I am not very active on, someone posted that they found a great blog with tons of info on DDH.  Guess who!?  That's right… yours truly!  It made my day to see that.  Hopefully I am helping someone out there!

Enjoy the rest of your summer!

xoxo

Karen and L squared!

1 Amazing Year!

Hello from sunny Arizona!  
We are almost hitting 100 degrees already, and it's official.
It's SUMMERTIME!  
Usually I get ill at the thought of facing another summer, but we have had a super busy year, so we are ready to chill out a little bit, enjoy swimming and splash pads, and go on plenty of ice cream dates to cool off. :)
Tomorrow is May 20.  Exactly 1 year ago my Lucy had her Dega Pelvic Osteotomy.  If you aren't sure what that means, here's a link to describe her surgery.  (YIKES!)
It doesn't feel like a year ago at all… It feels like a really, REALLY long time ago.  I guess that's because Lucy is amazing me every single day, and I honestly don't feel like I have as much of the constant worry that I used to.  (Notice I said 'as much.'  There's still a ton of anxiety and worry every single day, but it's better.)
So, what have we been up to?!  
Lucy just completed her first year of preschool.  It was probably the best decision we have ever made, putting her in this school.  She has the nicest friends, who have the nicest parents… therefore we are all going to be friends for life!  Her class put on a Mother's Day tea party for all the moms, and sang us a few songs, and it took every ounce of my strength not to bawl the whole time.  Seeing her sing, 'I LOVE MOMMY' made my heart burst with pride and joy. 
HERE IT IS!!!  Cutest ever...
We still are attending physical therapy, but will soon be done, and on a monitoring basis.  Lucy still… STILL has trouble going up a stair without holding on, with her left leg.  It's crazy how much muscle strength she is still working on gaining back.  
We have her enrolled in swim class, and it's been really great for her!  Our physical therapist said she gets a lot of propreoceptive input in the water, so she can really go to town!  I watch her swim every week, and I can't believe that she is the kid in the water… she looks like a 6 year old in there!  Again… PROUD!!! So proud of this girl.
The difference one year has made… 
I see all of these new parents on our hip group, and my heart really goes out to them… however, I am so happy to share our story and remind them that things will get better… I feel like my Lucy is a success story, and will continue to be a success story.  
So, with that said, the babes are waking up…
I just wanted to do a ONE YEAR post and say this:

#TAKETHATHIPDYSPLASIA

My little fish!

Buddies for life!

You know, just hanging out playing FROZEN!

Did you know?!  Anna and Elsa live here...

Celebration lunch after the last day of school

PURE JOY

If there is an hour that goes by that she isn't dressed up and singing LET IT GO, it's a miracle

Saying goodbye to our favorite doctor and the best surgeon in the world… Thank you Dr. Segal for treating Lucy like she is your own!  We love you!!!! 

At Disney on Ice….

Our Dr. Segal

Hi friends,

This post is one that I didn't think I would have to write.  One that I was hoping never to write.
Our beloved Dr. Lee Segal, Lucy's ortho surgeon, has left Phoenix Children's Hospital.  He is headed to the University of Wisconsin in Madison.
My first response was NO!!!!!!!!!!!!  No way could this happen!  Then, I calmed down a little, and began to realize that God sent Dr. Segal to us when we needed him most.  Dr. Segal was Lucy's angel.  I have no doubt! 

For those who don't remember, let me tell you how we found him.
We had our first meeting with an ortho at PCH. (Not Dr. S) He seemed like a great doctor, but wasn't a great match for us.  I was determined to get a 2nd, 3rd, 4th opinion, whatever it took.  I went home, did some research online, and saw Dr. Segal's picture and bio.  With the 'Director of Orthopedics' title, who wouldn't want him?!  I mean, that must mean he's the best, right?!  So I called.  My heart sank when the receptionist said, 'he doesn't have any appointments until May.'  (It was January.)  Great… I was really hoping to see him.  
She did give me the name of another ortho, and said he could see me in the Mesa clinic location of PCH on an upcoming Wednesday.  
We anticipated this appointment, hoping and praying that this doctor would be the right one.  If this doctor wasn't going to work, we would be heading to California for some other opinions.  Heck- I would have flown to the ends of the earth to find the right surgeon.

We get to the PCH clinic, and upon check-in, the receptionist told us, 'that doctor isn't here today.  He doesn't work here on Wednesdays.'  For those of you who know me, you know that I would have not made a mistake on the appointment day and time.  I even had a voicemail reminder call!  I got teary eyed, and told my husband, 'let's just leave.  This isn't meant to be… we need to start checking out other hospitals and doctors…'  That may not sound reasonable to some, but to very confused and scared parents, overreaction is a daily occurrence.  
Sure enough, the receptionist came to us as we were headed out the door and said, 'Wait.  We have one ortho here today, and he is overbooked.  He just got here, so let me see if he could see you.'  She came back after a few minutes and said, 'yes.  Come on back, he will be right in.'

A few minutes later, the door opened, and it was Dr. Segal.  I recognized his photo from the profiles page on the hospital's website.  I said, 'you're the doctor I have wanted all along.'  He looked at me and said, 'why?!  Why would you want me?!'  and laughed.  I knew right then, this is our doctor.  He was so normal.
He spent close to an hour with us.  He explained things.  He did an exam on Lucy. He got down on Lucy's level and would play with her.  He treated her like a little girl, not just his first patient of the day. He comforted us.  He gave us a 'road map' of what we can expect in the future.  
We left the appointment with our beautiful 12 month old daughter, and I told Aaron, 'As much as I don't want to do this, this is the right doctor.'  He agreed.  It was a strange feeling we had leaving that appointment...strange in a good way.  Like a big, warm feeling of comfort is the only way I can explain it.  
  
Since that day, Dr. Segal has never disappointed us.  

Who knew that when we showed up for an appointment on the wrong day, that we would be so lucky to get him?!  
Prayer, my friends! Prayer.  We prayed and prayed and spent so many nights crying our eyes out, hoping that we would find some comfort in this awful diagnosis.  I remember saying, 'God, please. Just give us a sign.  Give us a sign that Lucy will be okay.'  Dr. Segal was our sign. 
Dr. Segal entered our lives with everything we could ask for, and more.  Expertise, love, kindness, understanding, professionalism… I could go on for days.  He walked this journey with us, as a member of our family, not just a doctor.  He gave my Lucy the opportunity to have a normal life.  
I will never forget when we were just about to send Lucy off with him for her first surgery… Feb. 16, 2012.  I was laying with her in the pre-op bed, and just holding her, and studying her little legs and tummy and thinking about how I am going to miss those things so much!  To say I was upset doesn't quite cover it.  I was a total wreck.  Dr. S said to us in his calm tone, 'Guys.  I will take care of her like she is my own.'  Can you imagine what that meant to us?  Confused, scared, anxious parents in a pre-surgery room with their little baby about to be put in a body cast. 
It meant the world.  It meant the world because we knew that he meant it.
He is our partner through this, not just our doctor.


Having him be Lucy's doctor is probably one of the best things that has happened to us.  Not only did we get the best doctor, we have a member of our family for life. (His beautiful wife, too!)  Truly, the kindest and most caring people I have ever met.

So, for those of you who are in the Wisconsin area and needing an ortho, don't hesitate. You will write me and thank me for the referral. :)
For those who are doctors and need to learn from someone, don't wait.  He will lead by example, and anyone who becomes half the doctor he is, consider yourself lucky.
For those who want the best, Dr. Segal is the one.  He WILL take care of your child like he/she is his own.  

Be sure to tell him, 'Lucy says hi.'

Where do we go now?  I don't know.  Honestly… our next appointment isn't until January 2014, so I have plenty of time to interview some recommended orthos and pray for someone as amazing as Dr. Segal.  (Although I don't think anyone will ever compare.) 
Would we travel to see him?  Absolutely.  It won't be November-March, but after that… heck yes.  Only the BEST for my baby!

(here he is with M & M on his cap. Long story, but Lucy's first pelvic osteotomy was actually cancelled due to her sneaking an M & M.  So at her 2nd appointment, he showed up in pre-op with this on.  We were cracking up.)

Thank-you God for leading us to our angel.  

"People pay the doctor for his trouble; for his kindness they still remain in his debt." - Seneca

Dear Dr. OZ...

I got the idea from a friend…
I couldn't wait to start!
What are we doing. you ask?

We are starting a petition to hopefully get the attention of the national media!

THE DOCTORS show and DR. OZ!

I have started a petition on change.org that is asking (begging, really) for these doctors to do a segment on DDH.
The numbers of infants born with hip instability is astounding.  1 in 1000!
So why isn't there more awareness and info out there?  Good question… BUT… we are standing up and going to do something!  Being in the DDH world for the last 2 years, I have heard some pretty scary stuff… I have also seen some amazing things.  It's time to stand up and do this…

As you know, I have been asked to be the parent/child advocate for One Hip World.
I am so thrilled to be a small part of something SO big and so great.  I am truly honored.

So Dr. Oz…. if you are reading. WE NEED YOU.  WE NEED YOUR HELP.
Pediatricians are missing hip dysplasia left and right.
Parents are confused on what to do.  Parents are scared out of their minds.
There is very little info out there.
Our children are suffering and us parents are overwhelmed.

My daughter, Lucy, had surgery and a body cast at 13 months.  She was in her body cast for 4 months, totally immobile.  After that, she was in a brace for 6 months!
Recently, in May of 2013, she had a pelvic osteotomy.  Wheelchair for 6 more weeks.

When DDH is picked up via ultrasound at birth-6 weeks, a pavlik harness can be used, therefore possibly not needing any surgery… We can only wonder 'what could have been…'  Maybe our lives wouldn't have been surgeries, casts, tears, and heartache… Maybe… just maybe, by doing a show on DDH, we can help prevent this from happening to more children.

Parents like us have started online support groups via Facebook, and One Hip World.
We need more.
We need national attention to DDH.

Please help us!


Love,

Karen
onehipworldkaren@gmail.com

Lucy's mom

:)

LINK to our petition:
(Please sign and share!!!)
DDH PETITION FOR DR. OZ and THE DOCTORS

X-ray day

Lucy is officially a THREE year old!

Happy New Year!

I haven't kept up on my blog at all. 

Guess why?!  I have a baby who is crawling all over, and a now 3 year old who has more energy than I thought was possible!  I am actually excited- SUPER excited, actually, to be sitting down and writing this post.

Today was x-rays for both girls.  Lily's 1 year precautionary x-ray and Lucy's 6 month post surgery x-ray.  Talk about nerves!!!  I have had nightmares of both girls needing hip surgery and being in spica casts at the same time.  

Thankfully, all seems to be going well... at least for now.

We get called back at PCH, and I take Lily in the x-ray room.  She lays on the table and is screaming bloody murder.  She has recently developed 'stranger danger' so this was rough for her.

Aaron then took Lucy back, and he told me, 'she's so cute. She says CHEESE when they take the x-ray.'  I remember her doing that last time, with tears running down her eyes.  So sweet and innocent. I hear Lucy leaving the x-ray room with new friends, 'BYE GUYS!  Thanks for the picture of my hips!'  You'd think after all these doctor visits, surgeries and so on, she would be scared of these appointments.  Nope.  She loves it.  She adores Dr. Segal and was looking forward to seeing him all week.  If a kid at school falls down, she immediately tells them, 'Oh no! You need Dr. Segal!'

Dr. S comes in the room, and talks for a bit, and then the computer doesn't work.  Great.  So he tells me to come to his computer and see the film.  We walked down the hall and I told him I am really nervous and he said, 'it's FINE, Karen!'  I said, 'are you just saying that or did you peek at the film already?!"  He just smiles and rolls his eyes... :-) 

There it was.  The x-ray.  I could immediately see the bone growth.  

Amazing.

Where Dr. S pointed out awhile ago that cartilage 'should' grow--- cartilage DID grow. It's now bone and growing over the femur.  He pointed out where the bone graft was, and said it's looking good.  

He did say we aren't ever 'out of the woods.'  We are, however, going to yearly x-rays... (That's a huge deal- haven't had a year break from this EVER!)  

Lily's x-rays look good.  He did say he wants to follow up with Lily at age 2 again- just to be sure.  He's over cautious, which we so appreciate.

I got tears in my eyes looking at Lucy's x-ray.  It's like all the hell we have been through, all the tears, all the horror, all the pain, all the appointments... this is what we have been waiting and praying for.  A good x-ray.  Finally.  

Thank You, Lord! 

 I am beyond thrilled today.  :-)

We left the appointment and I told Lucy that I would take her and sissy for a nice lunch.  She smiled and said, 'I had a good x-ray, mommy!'  That melts my heart.  I said, 'yes you did, baby!  Now where should we go for lunch.'  "McDonalds!!! YAH!'  

Oh great... So.... we called Grandma and Grandpa and they joined us at good ol' Mickie D's for lunch.  Lucy loves to play there... So our celebration lunch was all Lucy could ever dream of.  Chicken nuggets, fries and a chocolate sundae. :)

Recently, Lucy has been able to run.  First time in her life.  She always could walk fast, but the other day, she ran.  PROUD MOMENT!

She jumps on trampolines with both feet off the ground.  She's excelling in school and in PT.  She has the most wonderful little group of friends.  Nicest teachers.  We are so lucky. 

Now, her gait, it isn't normal.  It's hard to explain, but her walk is very 'clompy.'  She always favors the right (good) leg.  Stairs are hard for her.  BUT, there has been improvement, so we are going to keep working!

It's almost been 2 years since Lucy's first surgery.  I look back at these last 2 years and am just so thankful that we are where we are today.  We did it.  We made it through multiple surgeries.  We are currently kicking DDH in the butt.  We are making progress.  I STILL can't talk about some things without crying.  It's too much sometimes.  But.. it's made us who we are, I guess... we've learned a lot from this crappy journey...

All of the parent's out there facing this... don't ever stop praying.  Don't ever give up hope, even though I felt like I did many times.  It took this last year for me to finally sit back a little and really take the attitude of 'God is in control, what will be will be.'  It's a hard way to look at things, but I worried myself sick most days, and I wasn't going to continue to let hip dysplasia ruin our lives!  

Screw You HIP DYSPLASIA!  

I am happy.

So happy.  So thankful.  Thankful for our amazing surgeon, Dr. Lee Segal.  We love him to pieces.  Thankful for our friends and family. Thankful for Miss Hilary, the best physical therapist in the world.

Thankful to be the mom of these two little monkeys that light up my world!

Quick story.  I went in tonight to check on Lucy sleeping.  (I do this with both girls every night.)  I just kneeled by her bed and looked at her.  She's amazing... truly.  Her little spirit lights up every room.  I got tears in my eyes and let out all of the emotions of the day... She looked over at me, half asleep, and said, 'I Love You, Mommy.'  Nothing in the world could have made me happier than hearing that.  :)

Her and Lil are just total perfection.  There isn't a day that goes by where I don't catch myself staring at them and wondering how I got so incredibly lucky.

Here are some pictures, including today's x-ray.

Over and out, from the harsh winter of Arizona... (73 degrees and sunny... it's been rough.)

;-)  

This sums her up.  Full of life and so beautiful!

The loves of my life!

Lucy in her Christmas play at school. She was a cow at the stable for baby Jesus' birth.

Lily's first Christmas 

My 2 princesses

This was on her 3rd birthday.  We took her to Butterfly Wonderland and out to lunch

She got her 'Tummy Stuffer' dog for Christmas.  All is well with the world now that she has this thing...

Her birthday party at school. Do you know that out of all the toys and cake and partying... the BEST part of her birthday was to be able to wear the king hat at preschool...

Her party at gymnastics with her buddies

Lily has the life, huh?!

Waiting for Dr. Segal... Lily eating as always :)

My ONE year old on the 19th of January! I can't believe it's been one year

At McDonalds celebrating

Pic on right was in June 2013, post surgery dega osteotomy.
Pic on left is today... Notice the 'cup' of the pelvis looks rounded and deeper?  YEPPP!!!!!