Wednesday, April 24, 2013

Defeated but not broken

Well, here it is.
The post I have been dreading for the last year.
Lucy is going to have a pelvic osteotomy.
Today was her one year follow up x-ray.  Just pulling up to the hospital made me sick.  The smell of the food from the cafeteria, the click clacking of people's feet on the hard, shiny floor.  All of it turns on this 'panic and fear' button inside of me.
We were waiting in the waiting area, and Dr. Segal just walks on out... eating his breakfast, he comes over and hangs out with us.  Lucy, however, was not impressed. :)
We get called back for our x-ray, and about ten minutes later Dr. Segal comes in the room.  We hear what we have been having nightmares of: 'The hip isn't looking as good as I had hoped.'  At that point, I went numb.
After talking further, Dr. Segal said Lucy needs what is called a Dega Pelvic Osteotomy.  I am not too 'up' on how it's done exactly, and I can't bring myself to google it just yet.  I may not be able to, ever... All I know is they cut the bone, insert a small wedge of a bone graft- enough for it to cover the femur.  What's happening now is that the socket isn't forming the way it should.  The femur, by clinical terms, is still 'in place' but it has moved.  The socket can't continue to hold it into place.  So therefore, a new socket will need to be built.  This surgery is going to happen as soon as he can get us in.  He doesn't recommend waiting til the end of the year.  I honestly don't think I can handle waiting either... I want it over with.  I want to be able to enjoy Halloween and Christmas this year, I want to see Lucy run around and feel good!... so- the sooner the better... BUT- remember... we live in Arizona.  It's hot as heck already... (just because we don't have enough to contend with, let's throw in the heat...)  OH wait- and a newborn!  Yep.  We are facing a hell of a time.

Today on the way home, seeing my husband break down and cry.... no words to explain.  Lucy said 'Daddy...crying.'  UGH.

I am sitting here typing and shaking my head still.  Even though we were told to 'expect it' by Dr. Segal on our first appointment, it still kills me.  As some of you know, I am a part of a 'hip toddlers' group on Facebook... These kids and parents have been through various stages of hip dysplasia.  I LOVE this group.  They are like my family.  We are always there to support each other.  I would have LOVED to have been the 'one surgery success story' to give others hope.  I would have loved to be that inspiration.  A small part of me feels like Lucy is STILL an inspiration, and will continue to be to new families joining our group.  This is just yet another crappy setback of a late diagnosis.  (Let's not go there today, please.)

I have to share a story.  Yesterday- our friends Holly and her 2 year old daughter Hannah (Lucy's BFF), invited us to open gym play at a gymnastics studio.  (We are always scared of gymnastics, but this was open play to run around...) Anyways... Lucy climbed and ran and jumped with all of the other kids.  Yes, that's great. BUT- my favorite part of the day, and it may be one of my favorite moments as a parent... (Holly if you are reading this you will know already...) The teacher in the class did a 'freeze dance' game with the kids.  They blast the music and dance their hearts out, then the music stops, and they FREEZE!  Lucy was up there dancing with all the kids, jumping, smiling, giggling... She was part of the group.  My heart overflowed with joy and pride.  I can't explain it.  Hannah walked over to Lucy and held her hand and they danced together.  It was something so precious, so pure and so joyful to see.  A year ago, I couldn't see this joy.  I felt doomed.  Now I see this joy, and I am ripped apart inside knowing I won't see it again for months.  I am doomed once again.

Walking her back to her nap today- her little feet walking on the floor.  KILLED ME.  It's those little sounds, those little things that you take for granted every day.  I love her feet.  I love her little legs.  I love this girl more than life itself.

Who knows what our future holds.  This cast or abduction pillow- whatever we may have- we will push through. We have no choice. The after effects: sensory, trauma, you name it- is what scares me after the cast comes off.

I remember Lucy's surgery last year like it was yesterday.  When she woke up and realized she was in a cast... UGH.  I can't go there right now.
Lucy was in the car the other day and her little legs got caught on my purse strap.  She said, 'mommy.  STUCK!'  That word cut like a knife to hear, since I had a feeling we would be facing surgery again, and she would be 'stuck' again.  Combined with pain of having her bone CUT.

This isn't right.  This isn't 'normal.'  This ISN'T fair.  WHY my kid?!  Why?? Lucy is seriously the most precious, perfect, sweet, amazing little girl.  She lights up every room.  She makes me laugh a million times a day... She loves to love.  She shares, she is caring, she is PERFECT.  Anyone who knows her would agree.  Her and I have a bond like no other.  She is my everything.  My best friend.  My WORLD.  Again, I SO wish I could have this done for her.  The thought of doing this again has crushed me today.  I am going to pray for strength.  I know God is by our side always.  I just need him now more than ever.

I am thankful for our friends from all over the world who prayed for us today.  From our friends here in AZ, all the way to the UK, Canada and New Zealand.  We are blessed with such love.

Keep us in your prayers, and I will post more when we have a surgery date.
Off to snuggle her sweet little body and legs :)

My amazing girl

Total pro :-)

In the pool the other day with her buddies... something we will miss a lot this summer

Notice how she keeps her left knee bent?  She avoids weight shifting on that side- a lot...

We love these girls!  Ashlyn and Kyla will be over a lot to play with Lucy :)

Sister Lily will always be by her side


I need this.

Mommy and Lucy. Best friends for LIFE.

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