Tuesday, April 30, 2013

The Parent's Guide to Hip Dysplasia

Just put down 'The Parent's Guide to Hip Dysplasia' book.  Done!
Took me awhile to read it, since we had some 'not so good news' this last week, it was tough for me to read.  Especially the part that hit on the 'Dega Osteotomy.'  That's what Lucy is going to have done...
I wanted to write a review on this wonderful book.
When I first found out about Lucy and her DDH, I saw this book on Amazon.  Actually, it wasn't this exact same book, since author Betsy Miller came out with this new and updated version.  I was too scared to read it.  Too scared to buy it.  Too scared to even admit that this was happening to us.
Looking back, I wish I would have purchased it a year ago.
There is SO much information for a parent faced with this DDH journey.  From everything to Pavlik harnesses for infants, braces, spica casts, and even info for teens facing surgery.  I loved the part where it discusses physical therapy, since the author spoke to Lucy's physical therapist, Ms. Hilary!
The book shares wonderful stories from parents and teens dealing with DDH in some way.  I love that it shows that these kids/teens are real... they have real stories to share, and they share how they were treated at school, and their feelings of friends not understanding.  I am sure those kids feel very alone!
With the help of this book, it helps us to better understand what our kids are going through.
On our Facebook group for Hip Toddlers, there are questions from new parents of hip kids daily.  Questions like: what should I expect after the cast comes off?  How do I breastfeed in a spica cast?  Will my child need physical therapy?
All of these questions are discussed in the book.
I thank Betsy Miller for shedding light on DDH, and putting together such a wonderful, 'up with the times' book.
I hope and pray that if you are a parent with tons of questions, that you don't hesitate to read this book.  Like I said, it's tough if you are going to be facing surgery like we are in 2 weeks.  I am of the mindset now that I want to be prepared.  Over prepared!
As much as we love our surgeon, sometimes I am so flustered at the appointments to ask certain questions.  Especially because Lucy now understands things, so I want out of there as fast as possible!  This book is one that I can come home... gather my thoughts, and read through when I am comfortable.  It answers tons of those questions...

Thanks Betsy for an amazing book, and for helping us understand DDH.

Hilary Keen!  Our therapist that means the world to us!


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.

Monday, April 15, 2013

We're back!

We are back!  Hello everyone!
Haven't posted in awhile- been just a tad bit busy with a toddler and a newborn... :)
There are so many things to update, I don't know where to start...
Life with 2 babies has been amazing... Wild, but amazing. Lily seems to have just fit in perfectly with our family.  She sleeps through the night now, loves her sissy, and officially holds the other 1/3 of my heart. :) Lily had her 6 week ultrasound to check her hips. It was so stressful!  I love how they had the radiologist in there during the US to tell us the results right then... He was so nice, and told us that Lily's hips are within normal range.  WHEW!  We also took her to have a physical exam with Dr. Segal, because nothing is going to be accepted by me unless I hear it from him.  (We trust him with our life!)  So it's confirmed.  Baby Lily is awesome.  We will take her for an x-ray at 6 months to be sure, but so far, so good.  Thank you God.
Lucy is... how many words can I use to describe her... amazing, awesome, perfect in every way... To me she is!  If you met her, you would agree...
We are back in physical therapy... why?  Well, Lucy had a break for about a month, then went for a follow up PT appointment... The therapist wasn't happy with Lucy's gait.  Mainly her 'weight shift' over her left hip. (The bad hip.)  This weight shift thing is really a huge deal. We have been working on this for so long, but there is still so much weakness in the hip area, that Lucy is compensating by keeping her left knee bent while standing, always starting with the right leg when walking--- never using the left the way she should... She is avoiding weight.  SO... back in physical therapy.  I am ok with it since we love Miss Hilary, we love the progress she's made, and I love learning how to work with Lucy at home.  We will stay in therapy as long as necessary.
Today was an interesting therapy session, as I am learning once again that our hip journey hasn't stopped with the removal of the cast.  We are being referred to an occupational therapist for an eval.  Lucy's physical sensory issues due to the trauma of surgery and a cast for 16 weeks- have been thrown off.  Physical therapy has done wonders for her.  She is the kid she is today thanks to the work of Miss Hilary.  There are just a few things that are still 'off.'  Miss Hilary explained that when one sensory system is off, the others will over compensate as well.  So, we are going to meet with an OT to see if we even need more therapy, or have her give us some things to do at home.
Stupid DDH and that stupid cast have been affecting our lives for the last year.  We have our 1 year x-ray with Dr. Segal (Lucy's surgeon) on April 24th.  To say that I am nervous is an understatement.  We have been working our tails off in therapy, done all of the work we are supposed to do at home.  I just hope somehow, some way- it will show improvement on the x-ray.  Again, for those who don't know, we are waiting on the angles of her socket to lower... If they don't- surgery and cast again.  It's something that haunts me every minute of the day.  So, I am praying and hoping that we get a good x-ray.  There are so many things that can go wrong.  The hip socket could stop growing.  The femur could begin to move and want to slip out again... The blood supply to the femur could be compromised... You get my point. This x-ray is HUGE.
Lucy is now wearing orthotics in her shoes.  She wears them in her tennis shoes.  Funny thing- on Easter I wanted to get some good pictures.  I bought her some strappy white sandals- just for her photo with the bunny.  She flipped out.  She wants the shoes with support!  She said, 'NO NO NO!' and got her other shoes.  Ms. Hilary said she needs to feel her feet!  She needs that input that the tennis shoes and inserts give her.
Be ready for a picture overload below, but I am playing catch up!
I also just received a signed copy of THE PARENTS GUIDE TO HIP DYSPLASIA by the wonderful Betsy Miller.  I am so thankful to have been asked to read this book and write a review on my blog.  This book is the new and updated version.  I am going to get on it right now!
OH, and before I sign off for the night--- A 'hip' mom from our group came to Phoenix to meet us!  Our friend Ashley, along with her beautiful family and hip baby, Morgan- drove from Las Vegas to Phoenix.  Why?!  To attend the YO GABBA GABBA concert with us!  Yes, on about 3 hours of sleep a night, we took Lucy to see Yo Gabba Gabba.  It was awesome!  To meet Ashley and her family was just awesome!
Will post once our AWESOME x-ray report is in..... :-)  (positive thinking going on here!)



Lucy, Morgan and Mikayla. Friends for LIFE!

Lily's ultrasound... Perfect little hips!

Working her hip at Gymboree class

Loves of my life playing iPad

Mommy and sister doing work outs with Lucy at the local high school.
Stairs are one of the best things we can do!

Every girl needs a bulldog.  Every bulldog needs a beautiful little girl as their sidekick!

My husband is the luckiest man alive. He comes home and can barely get out of the car without Lucy yelling- DADDY!!!! DADDY!!!!!!

Hopefully my blog helps someone out there

We found a 1 ft deep toddler pool to work out in!

Beautiful sisters (and Brobee!)