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!!!!!!

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

2 week follow up

I am a tad bit behind with my blog update... :)
Man, a toddler that is restricted AND a 4 month old is taking about every second of my day...
BUT...
they are both asleep, and I have my Trenta Iced Green Tea from Starbucks and I am ready to type away.

As some of you may know, this pillow is... well... it's off just as much as it's on.  Not by my choice... Lucy has taken matters in to her own hands...
The first week or so, things were okay.  She never thought of taking it off.  Then- one morning I walk into her room, there she is.  Naked as a jaybird.  No pillow.  No diaper.  No shirt.  She said, 'Mommy!  I sleeping!'  From that moment on, our pillow friend has been kicked off during every nap and every night.
I have threatened her.  I told her the wolf (long story) is going to come in her room and get mad at her.  I told her the Dr. is going to get mad.  I have done everything in my power.  It doesn't work.  She is two.  She feels great, and she's ready to roll.  YIKES.
(The 'wolf' is actually a fox on the Nick Jr. show Peter Rabbit.  She calls him a wolf and always says 'scary!!'  I figured that might scare her to keep it on.  Nope.)
With our 2 week 2 day appt, I was scared to death that this bone wedge had moved.

We arrive to Phoenix Children's Hospital and for once, Dr. Segal is on time!  Shocker!
We get the x-ray, and are walked over to our room to wait for Dr. S.  We see him walking by as we turn the corner and what does he do?!  Walks over, sticks his hand in Lucy's bag of gummy bears, takes one, eats it, and says 'That said Dr. Segal on it.'  HA!
He comes in the room and starts talking to Lucy about Houdini.  He tells her that he could escape from any contraption, just like her!
He took her stitches out and said she is healing beautifully!  I said, 'well, I hope her x-ray is as beautiful.'  He said, 'it's fine' under his breath.
He pulls it up on the computer, and WHEW.  Looks awesome!
Thank you GOD.
He explained that her AI angles have decreased already, and will continue to do so as she grows and her cartilage turns to bone.  The AI is acetabular index.  Basically that means the angle of the socket.
Her number was at 34, now post surgery it is 27.  20 is about ideal right now, but he isn't worried about it at all, and says the bone growth will occur.
I told him, 'I have a confession.  Lucy stood up wearing her pillow.  AND she takes it off all the time.'  His answer??  'Do the best you can.  She looks great!'
He then asked how 2 more weeks sounds... Wait- what?!  REALLY!?!?  I was like 'heck yes that means only 4 weeks total!'  He was all on board with it.
Then- he said, 'no, let's wait til the following week.'
I asked him, how did he change his mind that fast?!  He said he would feel better with that extra week.  No, it's not going to kill me- but to shave off that time would have been nice.
OH WELL, not that it's 110 degrees here now or anything... and we are stuck inside...with a baby and toddler... No big deal. What's another week.
:-P
So, there ya have it.
June 26 is our magical date of the final x-ray and pillow off.  (Well, pillow off for good)

Ironically- one year ago yesterday marked the day that Lucy got her cast removed last year.  What a year it has been.  Never would I have thought that we would have 3 surgeries under our belt, 3 body casts totaling  16 weeks, 6 weeks of a brace, a pelvic osteotomy and a BIG, ugly, removable pillow.  Wow.  What a year it's been.

One thing I have noticed with this time around, is that people are SO much nicer!  When Lucy had her cast on and was in our stroller, we would have people staring, asking us 'how did you break her legs?' and gasping as we walked by.
This time, I can't even begin to tell you all the free stuff Lucy has gotten!  Managers at stores have given her free chips, hats and candy!  The aquarium that we visit gave us a free buddy pass for next time... a nice man in line at Target bought Lucy Doritos.  At Starbucks they gave her a free vanilla milk.  People walk by and purposely say how cute she is... I guess a child in a wheelchair breaks your heart.  I guess I never thought of her that way- as heartbreaking- just because I know the truth.

I know as she is strolling through the mall, with her new hat, eating a bag of Doritos, sipping on her Starbucks Vanilla Milk... that she could rip this pillow off in about 2 seconds flat, stand up, and be GONE.  It's funny.... It's almost like our little secret.... :)

Until next time folks....

Ashlyn and Kyla. 2 of the sweetest girls in the world hanging out with the other sweetest girl in the world!  They are so excited to come over and play with Lucy and Lily!

Waiting for Dr. Segal

OK, the pic on the left is her before x ray.

Notice on her left hip (right side on pic) the socket doesn't cover the femur?

Now on the right picture- that's the x-ray from her visit.  The bright white area just above the green line- that's the cadaver bone wedge... Notice how the socket now covers her femur?  Yep, that's the point...

Celebration lunch

Makes me sad.  This is her incision after he removed stitches

Lucy and her BFF Hannah at the aquarium

And this little stinker... she wheels herself away from me in about 2 seconds... She is too smart for her own good

AND... dun dun dun... it's almost off!

I have had people tell me- 'oh, just put tape on it.'  That's not the problem.  The velcro isn't what she messes with.  She is so strong... either she uses her good leg to slip out of it, then takes the good leg and pushes it off, or she just uses her hands and pushes down.  

This pillow is getting BURNED.

JUNE 26.

And.... it's almost off...again