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 change.org 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!


Love,

Karen
onehipworldkaren@gmail.com

Lucy's mom

:)

LINK to our petition:
(Please sign and share!!!)
DDH PETITION FOR DR. OZ and THE DOCTORS

Wild Child

I have never thought of Lucy as a 'wild child.'  She is honestly the best 2 year old I have ever seen.
BIAS?!  Maybe a tad... but really.  This kid is pure perfection.
She listens.  I would tell her, 'Luc, don't move, mommy will be right back.'  She will put both of her hands on her lap and say, 'right back mama.'  I have to just look at her most of the time when she is acting up and she stops... she never EVER wants to make her mommy upset.  So many friends of mine do 'time outs' with their 2 year old.  Never once have I done that with Lucy.  She is very sensitive.  Very sweet.  A 'pleaser' type personality...

Until the pillow.

Dun dun dun... the big, blue pillow.

Now, as much as I complain about this pillow, it's 5 billion times better than the spica cast.  Actually, there is no comparison at all since the spica cast wouldn't allow her to sit up on her own.  It would go up to her armpits, making it to where she would have to lay down most of the 6 weeks.  The pillow allows for a lot more movement, a lot more core use, and a lot more worry for mama!
After hearing Dr. Segal say 'it could be 4 weeks, but I would feel better if she did the extra week,' in my mind, I know her hip is healed.  I think that's why I didn't fall on floor with a heart attack yesterday.  What happened you ask?

My sister was over visiting and helping with the girls... Lucy wasn't napping, so I went in her room and gave her some juice and the Ipad to have some quiet time.  (She usually plays for a little bit after waking up... she likes to do puzzles and watch Leap Frog)  We have the toddler bed barrier thing up after taking off the front side of her crib.  We did that because there was no way to lift her in and out of the crib.  You have to lift her like a baby, so with her being 32 lbs, it's tough!
Anyways...

The baby monitor is on, and I hear her laughing and playing... Until she says, 'MAMMA!  MAMMA!' That's pretty normal for her to yell when she is ready to come out... The sound echoed down the hallway and sounded like she was VERY close.  I run and turn the corner, and there she is.  The little booger was sitting on her bottom, just her shirt and diaper, scooting on her bum down the hallway.

OH.  MY.  GOSH.

My sister came running behind me and it was just this moment of silence where we didn't know what to say.
Lucy broke the silence by raising her arms up victoriously saying, 'YESSSSSSSSS!'
I just looked at my sister and said, 'I am at a loss for words for once in my life.'

I picked Lucy up and put her back in her bed.  I said, 'show mommy how you got out.'  She put her head down because she knew she shouldn't have done that.  What does she do?  She puts her hands on the side of the crib and pulls to a stand and says, 'TADA!'
I quickly said, 'NO Lucy!  You can't stand yet, not til Dr. Segal says you can.'  She said, 'OK mama' and then did it again.
(That night when my husband got home, the crib front went back on.  My back will just have to deal with leaning over with a 32 lb kid for the next week.)

My once perfect listener is over it.  Over the pillow.  Over sitting down for the last month.  Over restrictions.  Over surgeries.  Over doctors.  Over everything to do with DDH!
I don't blame her because I am over it, too!

Good news is that she was finally able to have a real bath.  That was pretty awesome.  We have even done 2 baths in one day just to kill some time...

Somehow through this surgery, I have managed to really try to stay positive.  Lucy understands things now, so she feeds off me.  I try NEVER to blame the pillow for anything.  Like, for example.  She will say EVERY DAY to me, 'gymnastics?'  (breaks my heart) but I say, 'no baby, it's not open today, pretty soon,' instead of saying, 'not til your pillow is off for good,' or 'we can't because of your pillow.'
It's a whole new ball game with a kid that understands...
I also say to her almost daily, 'do you want to go with mommy to the store and show everyone your pillow?  It's so awesome!'  She will say, 'yah! Lucy's pillow awesome!' and then she pets her pillow. :)
It's really sweet... if she would have been closer to 3, she wouldn't buy what I'm selling... but she's at the perfect age right now...

My husband was saying he thinks she's going to miss her 'Guppie stroller' aka the wheelchair.  We see people in the mall in a wheelchair, and I tell her, 'look baby!  They have a guppie stroller too!'  She gets so excited...

The BEST piece of advice I have heard through this journey is:

'Don't make her hate this as much as you do.'

It's true.  It's the advice I will pass on to new parents dealing with DDH.  A lady on our group's little girl had surgery last week.  Before her surgery I spoke to her mom on the phone... Mom told me how the 4 year old girl is actually excited to get a cool colored cast!  My answer was, 'GO WITH IT! Tell her how special she is, and tell her all of the fun things you can do together while she's casted.'  As a parent, that's rough since you know it's so much more than this... but a child's mind is so simple and innocent.  So that's it:  'don't make her hate this.'

And she hasn't, because I haven't let her.  We have pulled together as a family.  We have wonderful friends... we haven't let this get the best of us...

Just as things are coming to a close (8 more days!)... I now have a new way to describe Lucy other than perfect, amazing, wonderful, joy, love..... WILD!

I should have known when she was dancing in the hospital on the 2nd night we were there, that I was in for it this time... (thank God for pain meds!)

Or 4 days post surgery when she is rolling all over the place...

Or a few weeks ago as she is doing her 'Jungle Book' dance...


Actually, I am not going to call her wild.  I am back to calling her...

Perfect. :-)  I wouldn't have this little monkey any other way than what she is.  Everything about her, even scooting down the hallway after breaking free, is perfect.  <3

And there she is... scooting away!

Making a shirt for sister and her that match

Grandpa came over and Lucy was helping feed sister

You know it's love when she shares her pirates treasure

This toy has been so awesome... its colored pieces of paper that slide in a plastic case with cut outs.  You pop the colored buttons to make the picture... pretty cool

This was our second movie!  The LORAX.  It's part of the theater's summer movie program... super fun!

Hip Dysplasia: What is it?

I have been wanting to write this post for awhile.
There is so much to say... so much to try to explain about Hip Dysplasia, otherwise known as DDH.  (Developmental Dysplasia of the Hip)
It just so happens that JUNE is National Hip Awareness Month, so this is the perfect time to tell my friends and family a little bit more about Lucy's condition.
If you want to forward, re-post, share- whatever you want to do to get the word out there, PLEASE DO!  If I were to have known what these signs are, and what they mean, we may not be where we are today.

If I would have seen a poster like the ones pictured below.

If someone told me what an extra groin crease could be.

If someone told me to check leg lengths.

IF ONLY.

Now, some of you may wonder, 'isn't this the doctor's responsibility to know what to look for?'  My answer to you is YES.  My other comment is this:  No comment, because I can't/won't go there today.
We have much more to talk about that is going to help spread awareness...

Let's just say that an astounding number of pediatricians have missed DDH.  I know so many people on our group whose child has been walking around with a dislocated hip for YEARS.  YES... years!  It's a very silent disorder.  There isn't much known about it, yet the number of children with DDH is rising.

Most of my info is going to be taken from the IHDI. International Hip Dysplasia Institute.

I want to keep this post simple... I don't want to overwhelm you with too many gory details of what my child has been through.  (You can read through this entire blog and learn that.)  What I DO want is to tell you a few warning signs, and also a few tips on what NOT to do when you have a baby.

What causes Hip Dysplasia?

The exact cause(s) are not known. However it is widely believed that hip dysplasia is developmental. This is because hip dysplasia is known to develop around the time of birth, after birth, or even during childhood. This is also why hip dysplasia is often referred to as developmental dysplasia of the hip (DDH).

It is currently believed that infants are prone to hip dysplasia for the following reasons:

Hip dysplasia is approximately 30 times more likely when there is a family history.

Genetics plays a role, but is not a direct cause of hip dysplasia.

• If a child has DDH, the risk of another child having it is 6% ( 1 in 17 )
• If a parent has DDH, the risk of a child having it is 12% ( 1 in 8 )
• If a parent and a child have DDH, the risk of a subsequent child having DDH is 36% ( 1 in 3 )

This means that up to 1 out of 10 newborn infants will have some hip instability if a parent or sibling already has hip dysplasia.

The baby’s womb position can increase pressure on the hips

The positioning of the baby in the womb can cause more pressure on the hip joints, stretching the ligaments. It’s thought that babies in a normal position in the womb have more stress on the left hip than on the right hip. This may be why the left hip tends to be more affected.

Babies in the breech position are more likely to have hip instability than babies in a normal womb position.

Normal womb position.

Breech womb position.

Babies with fixed foot deformity or stiffness in the neck (torticollis) have slightly increased risk of hip dysplasia. This may partly be due to limited space in the womb from these deformities.

Also, around the time of birth, the mother makes hormones that allow the mother’s ligaments to become lax (stretch easier) so that the baby can pass through the birth canal.

Some infants may be more sensitive to these hormones than others, allowing for excessive ligament laxity in the baby. Girls usually have more ligament laxity than boys and girls are 4-5 times more likely to have hip dysplasia than boys.

The bones of an infants hip joint are much softer than an adult hip joint

It is easier for an infant’s hip to become misaligned (subluxate) or dislocate than an adult hip. This is because an infant hip socket is mostly soft, pliable, cartilage. Whereas an adult’s hip socket is hard bone.

Child

Illustration of an infant hip joint that’s still developing. The brown areas represent dense bone, where the grey areas represent soft, pliable cartiledge.

Adult

Illustration representing an adult hip joint. Note how the grey areas that were present in the infant joint are now completely replaced by hard bone.

Infant positioning during the first year of life

Cultures that keep infants’ hips extended on a cradleboard or papoose board have high rates of hip dysplasia in their children. Cultures that hold infants with the hips apart have very low rates of hip dysplasia. For this reason, swaddling with the hips extended during the first few months after birth should be avoided, and a hip-safe methodshould be used.

Picture of a mom carrying her child in a back sling. Her babies hips remain spread (wrapped around her mother’s back) keeping the hips is a safe position.

Picture showing how a papoose board (or cradleboard) is used. The child’s legs are kept close together, extended, and tied down tightly by the wrap on the board.

When you are at your baby's well visits, your pediatrician will check the baby for a 'hip click.'  Here is a little more on that:

What is a “hip click”?

A “hip click” refers to an audible “click” or “pop” that occurs when a baby’s hips are being examined.

When an infant has a “hip click” it does not mean that a baby has hip dysplasia. While some infants that have a hip click will be diagnosed with hip dysplasia, there are babies with hip clicks that have normal hips.

Why would a baby with normal hips “click”?

There are many ligaments inside an infant’s hip joint that can make snapping or popping noises in certain positions for many different reasons as the baby develops.

A “hip click” is just one sign that hip dislocation may be present in an infant. Further examinations and tests will be needed to know why an infant’s hip is clicking.

So what does a “hip click” mean?

An infant that has a hip click should be monitored for hip dysplasia. It is important for babies to have regular hip examinations during the first year of life. There are documented cases where the hips were normal at birth, but became dislocated in the first few months of life as the baby developed physically.

Even with careful physical examination, hip dysplasia can be difficult to detect in newborn infants. Further tests such as ultrasounds and xrays are normally needed to make a diagnosis for hip dysplasia or to be sure the hip is normal.

Your pediatrician will also check for uneven leg lengths and asymmetrical creases.

Lucy had asymmetrical creases since the day she was born!  

Asymmetrical buttock creases can suggest hip dysplasia in infants but, like a hip click, an ultrasound or x-ray study will need to be done to determine whether the hips are normal or not.

Asymmetrical gluteal creases may be a sign of hip dysplasia in one hip. Thigh folds (seperate from gluteal folds) that are asymmetrical rarely indicate hip dysplasia unless they are associated with uneven gluteal creases.

This baby's gluteal creases are uneven (note yellow lines). The right gluteal crease is lower than the left.

This baby's gluteal creases are even (note the green lines). However this baby's thigh creases are uneven (note the yellow lines). The left thigh is smooth but the right thigh presents with two creases.

When a baby’s hip dislocation is present for several months, the hips gradually lose range of motion and the leg appears shorter because the hip has migrated upward.

This baby's right femur (thigh bone) appears to be lower(shorter) than the right.

If your pediatrician notices anything that could be a sign of DDH, you will be sent in for an ultrasound of the baby's hips.  The reason an ultrasound is done is because a baby under 6 months old hasn't developed bone yet... They are mostly still cartilage, which is not as easily seen on x-ray.  

If the hips are within a normal range for an infant, YAY!  All is well.

If not, you will be referred to an Orthopedic Surgeon.  

Most likely, if the child is under a few months of age, the ortho will suggest a Pavlick Harness.  What the harness does is frog the baby's legs out, which puts the hip in the best position to stimulate correct growth.  Usually this harness is worn for 6-12 weeks, full time.  This can be very hard to accpet for a new parent.  You dream of holding your baby tight.  You dream of seeing your baby kick their legs.  With the harness, that may be hard to do.  BUT... with the harness and early detection, the success rate is ASTOUNDING.  Over 90% of infants that were treated with the pavlick harness will have success and not require surgery.  I can't stress enough how early detection is KEY.  If you know someone who is having a baby... send them this blog.  PLEASE!  

Another way of treating DDH in younger infants is a brace.  Lucy had to wear her brace, but only AFTER a surgery.  You can read more about braces here.

SURGERY

The dreaded surgery... Well, actually- the surgery isn't as dreaded as the SPICA CAST is.  Trust me.  My baby was in a spica cast for 16 weeks.  If I ever see another cast again, I just may go insane.  It's hot.  It's uncomfortable for them.  They can't move.  It smells.  UGH.  Everything about it STINKS!

If you have questions about it, e-mail me!  I feel like I am a spica cast expert.  Unfortunately.

Here are the three types of surgery:

CLOSED REDUCTION  (No incision. Manipulation of the hip joint back into place.  Child is place in spica cast after for 12 weeks)

OPEN REDUCTION  (Incision is made and hip joint is 'cleaned out.'  Spica cast is applied.  Usually this requires an adductor tenotomy, which is where they lengthen/cut the adductor muscle to allow the hip joint to go back into the socket.)

OSTEOTOMY  (Where a bone is cut and reshaped.  This is done to either the femur or the pelvis.)

And whaddaya know.  Lucy's had ALL THREE!

What can you do to help your baby's hips grow and stay healthy??

- Don't swaddle tight!  Allow room for the baby's legs to be able to 'fan out' or frog out to the sides.

Here is a link on hip healthy swaddling

- NO FRONT FACING BABY CARRIERS!  Those are considered 'crotch danglers' and don't support the baby's hips AT ALL.  I get sick to my stomach when I see a baby hanging there.  VERY VERY bad for their hips.

I recommend the BOBA carrier or the ERGO carrier.

- NO SLINGS.  Yah, they may look cute, but they hold the baby's legs straight, just like a tight swaddle.

Here is a link on hip friendly baby car seats and other devices.

I could go on and on and on for days, weeks and months about hips!  Unfortunately, we are living it, every single day of our lives... I thank God that this is all we have to deal with right now, and that this is our cross to bear... little sweet Lucy doesn't really understand yet.

Our first line of defense is knowledge.  PUSH your pediatrician to refer you for an ultrasound if you feel like something isn't right.

Below are some pictures I have collected to show you a little more about DDH.

I hope this post out there helps, if even just ONE person!  I will have done 'my job' if one family doesn't have to go through what we have!

Notice the right hip (left on picture) doesn't have a socket that covers the femur?  That causes the femur to dislocate.

Lucy's knee heights were WAY off!  When our surgeon did this test my jaw dropped!  

I check both girl's knee heights EVERY day!

Lucy had an extra groin crease like this since the day she was born

This is what front facing baby carriers do!  VERY BAD!

RESOURCES and how you can help:

ONE HIP WORLD fundraising for the IHDI

Consider a tax deductible donation today

HOPE THE HIP HIPPO book for children and website

THE PARENT'S GUIDE TO HIP DYSPLASIA book

Entertainment Extraordinaire

Well- 1 week away from surgery day.  YIKES!
Yes, I am freaking out, but trying to keep it together so I can take care of these 2 beauties of mine.

This surgery is our 2nd round of hip surgeries... I remember her first surgery like it was yesterday... I remember how badly I wanted to get her out of the hospital.  I remember her waking up for about a week with muscle spasms... jumping up screaming in the night.  I remember the look on her face when she woke up and was stuck in a cast.  She looked at me with fear in her eyes... total panic, and screamed and screamed until she threw up.  It was awful.

Am I expecting this again?  Yep.

The point to this is that I feel a little better knowing what to expect.  I know the first 10 days is going to be difficult aka a living hell.  I know I will wonder every day how we are going to make it through.  I know before bed every night I will cry and cry, and pray to God that her hip is healing... I know all this because I have been there before.

Today on the way home from her gym class, I caught myself looking in my rear view mirror at each stop light.  I tilted it down so I could see her perfect little face... smiling once in awhile and giggling when Dora did something funny.  (Yes, we have a tv in the car!)  She caught me looking at her and got the biggest smile on her face, and said, 'MOMMY! LOVE YOU!'  I just thought, how in the world am I going to do this?  How am I going to feel when that smile is taken off her face, and she wakes up with the look of pain and fear?  I am terrified.  Terrified of that first dreaded 10 days.

I am really trying to focus, and get prepared.  I didn't quite know how to prepare last time, and actually this time- I don't either!  We don't know if she going to have a cast, or an abduction pillow.  'Pillow' sounds like a half way decent option, until you see that its a huge, thick piece of foam strapped to her legs to keep her immobile.  Honestly, both options suck in my opinion, but at least with this pillow thing (and I use the term pillow very loosely) she can sit up on her bottom and play.  She won't have to be propped up with blankets and pillows.  AND- it's not hot for her.  I also have to admit, I am (unfortunately) a spica cast pro.  I can waterproof a cast and maneuver it around like nobody's business... 16 weeks of that will do that to ya... :)

I had a few hours alone yesterday, and decided to hit up our local craft store, Hobby Lobby, to find things for Lucy and I to do together while she is immobile.  Most of these were super cheap!  (Don't let the price tags on them fool you, they were 30-50% off that price.)  It's going to be a whole new ballgame entertaining a child that can communicate and has her own ideas... and knows what she is missing by not walking.  I am hiding all of these toys/crafts and going to bring 1 or 2 out each day to keep us busy.

OH WAIT!  I forgot to post this, but Dr. Segal told us that it may not be 6 weeks.  It could be FOUR!  SAY WHAT!?!?  We will re-evaluate after 4 weeks and pray that we get that lucky.  Four weeks is 28 days!  3 of them will be in the hospital... the following 7 will be hell so those don't count when you first get home... then the last week is the countdown... SO- really 2 weeks that we need to worry about.  (Yes, I am getting my hopes up, and I am CLAIMING this for Lucy.)  FOUR WEEKS FOUR WEEKS!  If it's 6, it's 6, but I feel like God is going to cut us some slack here, since we did a 2 week 'for fun' cast time the first time.  (Her hip re dislocated in the cast after surgery and we did close to 2 weeks for nothing!)  This is hopefully my good juju coming back... :)

Here are pics of what we have so far... There are more things coming also.  Total for all the crafts and supplies (including scooter board) were about $150... not too bad.  Sanity has no price tag. :-)
Hope some of these ideas help!

This is amazing. It should be here Thursday. I ordered it from Flaghouse. It's an extra long scooter board that she can lay on her tummy and zip around. (hopefully) My friend and fellow mom of 2 girls, Lindsay at Two Bobbins Later, is going to make a padded vinyl covering that's wipeable for it.  She's also going to make 2 pillowcases that velcro on.  She's uber talented, so this is going to look amazing.  AND- I am going to donate it to someone after we are done.  I have a weird thing with keeping anything that reminds me of this.  I got rid of all of Lucy's clothes that she wore during her cast last year.  Every single thing that reminded me of it... (sigh)

A lap tray.  This will work with a cast or pillow.  Perfect for a snack or a game...

A must!  PAINT!  We love to paint, so this will be something Lucy will enjoy...

We are going to make her and Lily matching shirts!  We got iron on transfers, and fabric markers and we are going to go to town!  I will let her decorate them however she chooses... Lucy will LOVE to see sister wearing something she has made...

Lucy is a HAT and SUNGLASSES freak!  We rarely go anywhere without her having to grab a hat... so we will decorate these with glitter and stickers...

Pom Poms and Feathers for sensory bins... I am going to do rice and beans also

These were kinda cute... Masks on a stick... Her cousins that will visit will have fun making these with her

Since Lucy is into accessories (LOL) she can decorate her very own purse. There are 3 in the pack

Stamps and ink pads... as long as she doesn't stamp her sister, we will be ok

So cute. We are going to do these for Grandmas for Mother's Day also!

We bought glitter to put inside the water.

ONLY .87 cents!

Re-usable coloring pages that turn colors when you add water. Pretty neat.

She will love this! Super good for fine motor skills also.

This was cheap, so we got it!  Looks fun...

This seemed to be a must... IF she isn't sleeping in bed with me, that is... 

Lucy LOVES LOVES LOVES the Nick Jr show, BUBBLE GUPPIES.   So, these will be her friends to sleep with for awhile to make her smile

Thomas the train re-usable ice pack.  She has no clue who Thomas the train is... She thinks its Chugginton, her other fave show, so I didn't tell her any different.  She touches it and says, 'I cold!'

Gift box from Grandma!  Pumbaa (from the Lion King) stuffed toy, Chuggington carry case and trains, Beauty and the beast figurines, matching games, puzzles...

Nick Jr's website has TONS of free printables!  This is for when she is DONE! YAY!

Also, there are TONS of free games, tv episodes and cool stuff!  It's a super website...

Another FREE printable. Matching game of Yo Gabba Gabba

FREE printable crown

FREE printable coloring pages

Free printable

Just a little quote that gets me through the day...

New Ipad cover.  It actually has a stand so we don't have to prop it up... She officially has her own play list of music too! (Don't judge)  :-)  We bought her headphones too, but those aren't here yet.

PERFECTION.

These two are the reason for living!

Thank you God for them and my wonderful family.  Couldn't make it without them. :)