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!!!!!!

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

The big surgery

WHEW!
The worst is over.
Here we are, almost 24 hours post surgery... what a crazy 24 hours it's been.
Currently, my little muffin is resting and watching Jungle Book on tv, (refusing to nap- pretty normal) and my big muffin (daddy) is playing on the iPad reading about football... I thought I would do my post as it's fresh in my mind!

So, Lucy's surgery yesterday wasn't until 2:30.  After having the 'case of the M and M's' we decided it was best not to give her anything to eat.  (After hearing a story of a child aspirating, we weren't going to take chances.)  Lucy got to have a popsicle and juice.  That's it. :-(
Figures, the day we are early, Dr. Segal and staff are behind.  We requested for Lucy to have 'pre meds' so she would be a tad bit loopy and happy, so she would go with the nurses without screaming and crying for mommy.
Well, that backfired.
She was loopy for about a half hour.  The anesthesiologist was late.  The meds wore off and my little angel Lucy turned into tantrum throwing-devil Lucy!  It was awful.  Long story short, they took her away from me.  Screaming and thrashing.  I felt so helpless.  It took every fiber of my being not to chase them down the hallway and get her back.
After about 1 hour and 20 mins, Dr. Segal comes out.  We are the only ones in the waiting room- and it feels like he is walking the green mile!  SLOW!  I am like 'hurry up!!!!!'
He sits down and tells us that her surgery went well, and shows us pictures of the bone he wedged into her pelvis.  OUCH.
Her hip socket looks beautiful.  PERFECTION!  Just like we knew it would be!  Dr. Segal said we will see him again for a 2 week x-ray, then a 6 week x-ray.  WAIT.  WHAT!?  What happened to this 4 week thing?  He is going to be out of town at the 4 week mark, so I told him that I am going to make an appt for 5 weeks.  He said, 'ok, you win. 5 weeks.'  So, 5 weeks it will be.
We wait about another 20 mins before we are allowed to see her.
Again, the longest walk of my freaking life.  We turn the corner and it hit me.  Surgery is over.  There she was.  A little 32 lb person that holds my heart in her hands.  This little person that gives me the inspiration and courage to be the best mother I can be.  MY WORLD.
She was laying there with a mask on.  I could smell the strawberry scented oxygen, just like she had last year.  It made me nauseous and so thankful at the same time.  Weird, and hard to explain.  I was so darn happy to see her- knowing that she is ok, that again- the world could have collapsed around me, and I wouldn't have even noticed.  I have been so strong up to that point, that I just lost it.  I layed my head next to hers and sobbed.  All the crying that I didn't allow myself to do up until now- it all came out.  Thank you GOD for keeping this little girl safe.
After that- things got rough.  Lucy woke up, and the first thing she said is 'ow mommy, I'm stuck! OUT OUT OUT!'  She started thrashing around and screaming.  IT WAS AWFUL.  She was pulling at her pillow and saying NO NO!  Talk about ripping your heart out.  The nurse gave her some additional meds which settled her down.
To me, that's the worst part.  Kids do eventually accept this.  It sucks, but they do.  That minute where they realize they are stuck, and the panic sets in.  That's the worst part of this.
But that's over.
We get to her room and honestly- things couldn't be going smoother at this point.
Her caudal (similar to an epidural but only lasts about 8 hours) has worn off,  and up until a few hours ago, she was comfortable on IV anti inflammatories, antibiotics and valium.  Valium is for muscle spasms.
No morphine needed!
She woke at around midnight and we had a full conversation about Deer, the Lion King and all kinds of cool stuff. :)  She drank apple juice and had some crackers.
She fell back asleep and woke at around 5 am.
Around 7 I ordered her some breakfast, which she ate well!  The nurses even took her off IV fluids since she is downing apple juice like it's going out of style.
She's been off and on resting all day.
Around 11 am she said, 'Mommy, leg hurt.'
At that minute I called the nurse and requested her pain meds.  They are oral pain meds.  Once the pain is managed, it should be pretty smooth sailing.  You just don't want to let the pain get too far out of control.
OK, so this pillow.
It's been cut down a lot (thank you Dr. S) and it seems pretty flimsy in my opinion.  But hey- I am not a surgeon nor care to be one, so I will trust Dr. Segal and his decisions. Thank GOD it's not a cast.  I hate those stupid casts and I plan on never seeing one again.  SO LONG, FAREWELL.
It's super light, like a sponge.  The velcro straps around her knees.  She's been kicking her toes all day long.  She's able to sit up at a 90 degree angle, and she can move, unlike the stupid cast.  This pillow and I are going to do just fine.  I have already changed her diaper a ton of times.  You have to roll her on her right side (the good side) and slide the diaper underneath her.
I haven't picked her up yet, but we will once we get a wheelchair to take her for a walk in.
She keeps getting so sweaty on her neck from laying in bed.... I keep wetting washcloths and cooling her down...
So- basically what they did to her- they cut her pelvis.  Yep, you heard it.  They made a cut in her pelvis, and tilted it down.  Then they added a chunk wedge of a cadaver bone in there to make it bigger and wider.  The reason they had to do this is because since her hip was dislocated for so long, it actually rubbed a 'false socket' on the top of her pelvis trying to create its own socket.  So that had to be fixed.  (Again, let's not get started on why/how her hip was dislocated for so long...)  Anyways...
All of that is hopefully behind us.
Brighter days are ahead.  Or some pretty crappy ones.  Whatever it is- WE WILL GET THROUGH THIS!  The worst is over.
Once this little babe was back in my arms, I knew that if I have to do stand up comedy to keep her entertained for the next 5 weeks, so be it.  I will stay up all night, all day, do ANYTHING.... anything at all to keep her happy and comfortable.  I know it's going to be hard for her... but with TEAM LUCY (aka Mommy, Daddy, Lucy and Lily) there is pretty much nothing that can stand in our way.
Let's just hope her bone accepts its new position and grows perfectly.

Thank you God for all of our blessings.  Our friends and family who texted me, called, e-mailed, messaged- whatever!  We are so lucky to have such an amazing support system.  Someone told me their mom's church is in Ireland, and Lucy was on their prayer list!  Amazing.
Lucy is living proof right now that God answers prayers!  She has had such little pain so far, that I am almost shocked.  Yes, it could get worse, but this has sure made our hospital stay a lot easier.
I am so thankful today for everything.

More to come!

Karen

Daddy went home last night (no room for him to sleep!) but came back with her beach ball!

Pancakes and an Ipad.

The pillow.  It looks big in the picture but it's not that bad

Dora.  Always.

Our hero.

Dr. Segal.  He came in wearing this hat!  HAHA!

When we were leaving recovery (after her flip out)

TA DA!  Perfectly remodeled hip socket.  Dr. S's drawing at the bottom showing what they did.

The hook shaped white area is the cadaver bone

Checking into pre-op.  Lucy said 'I a Dr. Segal!'

Look at those long legs.  No clue where she gets it from.

Getting out some energy...

UGH.  I miss this already.  But the good news is... there will be SO much more of this to come.

And it will happen in good time.  All with healthy hips.

<3

X ray day!

Some of you know, we originally had an x-ray scheduled for October 17th... well, it got moved.  Pushed back more like... to no other day than Halloween!  I was convinced that this is BAD LUCK!  Well, today proved me wrong... (I love being wrong in these situations!)

We show up at Phoenix Children's and we know the wait will be long... So, daddy goes in and gets us all checked in and the girls stay in the car watching none other than YO GABBA GABBA!  35 minutes later dad comes out to get us- we were called back... only to get so lucky and wait some more in the x-ray section... That actually went by pretty quickly- only about 15 more minutes.  They call her name, and Aaron takes her back to the x-ray room since I can't... She was so cute and little walking in there, and then she looks back at me and I say, 'it's ok baby!!!  You can do it!' She starts screaming and pointing and saying MAMA!  Goodness gracious.  I was doing okay until I heard that... 

So while Lucy is in the room crying for me, I am in the waiting room crying for her.  :-)

Finally that is over and we are moved to Dr. Segal's room.  He pops his head in after a few minutes and says 'hi guys!  Can I see Lucy walk please?!'  Ummm, hello- that must mean he saw something bad on the x-ray right?!  I put her down and she walks between Aaron and I, meanwhile I am beginning to panic... He smiles and says, 'she looks great.  I will be right back.'  WAIT!!!!!!!  Where are you going!

I turn to Aaron and say, 'he said the word GREAT so that's good, right!?'  It's funny how you begin to analyze every single word when you are worried... 

So Dr. S comes back in and has us come over to his desk to see x-rays.  He starts from the ones back in March which made my heart sink... He showed us that her AI angles were almost at a 40 back then!  That's NOT good... Then he is scrolling through and shows us in July they were approx 33.  Now today they are between a 29-30.  So I am going with 29!  Basically- we want them to keep going down!  That means the cup is being formed over the femur... 

The sense of happiness that came over me- I can't even explain it!  

He showed us pretty significant growth in her femur as well. Since it was out of the socket for so long, it didn't grow and neither did the 'cup.'  So the simple fact that both have grown in a few months is AWESOME.

Now, he explained to us he doesn't need to see Lucy for another 6 months... We are going to hope and pray for MORE growth and for those AI numbers to go DOWN.  He said if they don't, or if they remain the same for a long period of time, that's when she may need another surgery.  YUCK.  

So, we want SO badly to be a one-surgery success story... 

The femur is in perfect position for growth.  So at this point, I do what I have done my whole life.  FREAK OUT a little- then continue every single night and day to PRAY.  YES, you heard it.  I truly believe that God has a reason for everything, I may not understand or accept what he does some days, but someday I will understand... Lucy's life- and her hip- is all in His hands.  Plain and simple.  God has been SO great to us... Yes, we have had to deal with hip dysplasia, but you know what!?  He has also given us the BEST LITTLE GIRL to ever walk this earth.  I also have a feeling in January that I will have the OTHER best little girl to be born in her sister, Lily. :-)  Hey, what can I say, bias maybe?!

So in the middle of all my happiness today- I continue to thank God for every blessing in my life!

Here are a few photos of our day, and I am going to post links to a few videos from the last month or so of her walk... 

Happy Halloween friends!

Waiting with daddy in Dr. Segal's room

YAYYYYY!!!!!!!!!!!!!!!!!!!!!

X-ray was awesome!

Yesterday at Gymboree class:  (You can guess who the star of this show is, right!??)

http://www.youtube.com/watch?v=v58ZAU7pu6o&feature=g-upl

Walking 3.5 months out of her brace:

http://www.youtube.com/watch?v=0_gNHhhIUw8&feature=g-upl

Walking:  http://www.youtube.com/watch?v=JCpflYHcOi0&feature=g-upl