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

Giveaways

So much to share!

I have been MIA for awhile on my blog... Been super busy with the little ladies, and finally... FINALLY enjoying some outside time here in sunny Arizona!

Let's get right to it.

I have been asked to be the Parent/Child advocate for the amazing parent-run organization, ONE HIP WORLD.  Honored is an understatement!  Since accepting, I have been busy as a bee trying to fight for hip kids everywhere... even if it's something small, it can mean so much to a family!

With that said- I wanted to share a few things that we are doing.

CastCooler Giveaway- This may be the most amazing product for a spica cast.  Honestly.  I don't know what we would have done without it.  The owner has teamed up with One Hip World, and donated 30 CastCoolers to us to give away!  You heard me right!  Pretty cool, huh?!  

ENTER HERE by clicking this!

Ivy Rose Spica Chairs- another must have!  The owner and creator, Stephanie, is doing a quarterly giveaway of a spica chair to a family!  This chair and table saved our life and provided Lucy with the chance to have a tad bit of freedom.  She ate in this chair.  She played and colored.  She rocked back and forth.  It was a lifesaver!

ENTER HERE by clicking this!

This was Lucy after her first surgery in her Ivy Rose chair!  AW!

Snug Seat.  This is the company that sells the Britax Hippo Car Seat.  Usually this car seat is loaned out to families via their hospital, but unfortunately, we have word that a lot of hospitals don't have any in stock to loan.  Parents are stuck with a big bill for a car seat to get their casted child around in.  The regular retail price is $500, and with the promo code, they will be $400.  20% off!  It's still expensive, but every little bit helps!  (Promo Code to come asap!)

The Parent's Guide to Hip Dysplasia book. Author and friend, Betsy Miller is simply amazing.  This book covers everything you need to know as a parent of a child with DDH.  Betsy is offering to donate copies of the book, as well as free ebook downloads!  WOW!  Still finalizing details. More to come!

That's going to be great for our overseas friends, who pay a lot in shipping costs.

Amazon.  One of my favorite online shopping sites.  One Hip World has become an Amazon affiliate and is now receiving 4-6% back on all purchases made through this link.  You HAVE to enter and purchase through this link only.  I am now going to order everything on Amazon!  Diapers, baby food, household items, etc... We also get extra percentages if someone signs up for Amazon Mom or Subscribe and Save.  With Christmas coming up, we could really raise some serious funds!  If you have a facebook page or a blog, please link up and support One Hip World with this link!

HERE IT IS:  

Boba baby carriers.  Another great partnership from one of my favorite baby items.  Boba carriers are hip friendly and simple to use.  You can read here about my love for Boba!  They are sending me a few donated carriers to give away, and I am in talks with them of a promo code for us!  Hip Hip Hooray!

More info on how to enter soon.

Another cool thing I have just found and started using is called Receipt Hog.  What is it?  It's an app for your smartphone.  You snap photos of grocery receipts, including Target/Wal-Mart, all grocery stores, drugstores, and dollar stores.  I even snap pics of my receipt from Starbucks at Target.  Since it's at Target, it still counts!  You get points for each receipt submitted.  The company will send you a check once you have reached a certain amount!  It may not be a ton of money, but if we can have 100 people do it, sign over and mail their reward checks in to the IHDI, we could raise a lot!  So download the app if you can!  Super easy to use.  How they can do it is this: they track your age and area and see what you buy, then sell that info to marketing companies.  Great way to earn some do-rey-me.

So you know you can't get away without seeing a few pics of the babes, and hearing an update. :)

We are all doing great right now!  Lucy is still in physical therapy, and making improvements weekly!  She loves her preschool, and is going to be doing a walk a thon at the end of the month.  (sniff sniff!)  

Lily is perfect in every way, just like Lucy.  Bias?!  Nope.  It's true.  They both are simply perfect.  

I am so happy to be the parent/child advocate for an organization like One Hip World.  It's so dear to my heart, and I am ready to tackle this head on!

Thanks for reading, and let's kick some hip dysplasia butt! 

This is why Amazon is going to be so great for us!  NO MORE MALLS!  

Yep, that's my baby on the ferris wheel. She lasted about one minute then said DOWN!

I melt every single time I see this!  Preschool pic!

My little darlings after our 'spa day!'

Quality time

Just a little update on what the Farrish Fam has been up to!

BUSY BUSY BUSY as usual!

We just got back from La Jolla, California.  La Jolla is an amazing little place in San Diego.  AH-MA-ZING!  We love it there.  We did a quick trip, but made the most of every single minute in the beautiful weather.

We arrived at our hotel, and as we pull in, guess what is next door?!  An ORTHO surgeon's office. 

Really??

Can't I escape DDH for a few days?

Anyways... We drop off our bags, and hit the beach!  My little Goose was so happy... She kept saying, 'OH WOW MOMMY!  Ocean!'  It was so sweet.  Our hearts melted once again when we saw her running on the beach, the water getting her toes, and the look of pure joy on her face.  Priceless.  Some parents may take that for granted.  Not us!  It was awesome.

The 2nd day there we hit Sea World!  We got there right as they opened, and we felt like we had the place to ourselves.  Shamu, Dolphins, you name it.  We saw it! 

We were so tired after that.  Lucy walked more at Sea World than she has in the last few weeks combined.  She walked up all the stairs to get to the dolphin show... the fatigue kicked in.  She was done.  Instead of hitting the beach again, we went back to our room, ordered room service, watched TV and went to bed.  

We had a quick trip, but it was great.  Totally worth the 5 1/2 hr drive to see the babe at the beach. :)

We had PT again today.  Miss Hilary really worked Lucy out today.  She had her do some exercise ball activities.  Twisting and reaching while laying on the ball on her tummy.  Lucy's trunk, core and glutes are still very weak and tight.  We are hoping to stretch them out and help her gain strength.  Hilary showed us some things to do while on the ball.  

We also did some single leg step ups, and man... broke my heart.  Lucy's left leg is still so weak.  She can't step up with her left leg without holding on to something.  After all the PT we have done, it's STILL that weak!  I can't imagine if we didn't do therapy how weak and tight her hip would be. 

Well, kind of a boring post today- but I wanted to get these pics up! (The 2 reason I write this blog is for Lucy, and also to help other parents)  

I hope Lucy can read this one day and see what she has been through as a child.

(If you are reading this I LOVE YOU LUCY!!!!!!!!!)

OH- before I sign off.  Lucy is potty trained.  It's been only 6 days and she's got it.  

Yes. 

She's a star!

                                                    Feeding the sea lions at Sea World

'MORE WISHIES!'  $25 in fish later..... (Yes, we are suckers!  Anything for this girl...)

Does this look like $100 of food?  The hotel sure thinks so....

It was a half hour before we got her out of this boat....

The star of the show!  SHAMU!

Lucy said 'CAST'  I said, 'do you need a cast??' She answered, 'YES'
So- I wrapped her legs up in blankets.  She then took it off and said, 'Dr. Segal- hip all better!'  Crazy how this is her 'normal'

At Coyote Cafe in Old town San Diego.
They serenaded Lucy!  She loved it... 'MORE SING!'

At San Diego Harbor seeing the pirate ships

JOY

Yes.  We needed a 5 foot pink dolphin to lug around all day at Sea World....

Feeding the sea lions...

Nothing better

She loved being in the hotel!!!

'Hewwwwwohhhhh?  Gwamma???  Bye.'