Wednesday, January 29, 2014

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 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!



Lucy's mom


LINK to our petition:
(Please sign and share!!!)

Wednesday, January 15, 2014

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.  
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!  

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!!!!!