Showing posts with label hope the hip hippo. Show all posts
Showing posts with label hope the hip hippo. Show all posts

Wednesday, July 23, 2014

Together we can, Together we will!

Happy Summer! 
Unless you live in Arizona, then you are melting right along with us at 115 degrees today!
We have been swimming almost every day to try to stay cool, and Lucy has become quite a little fish.  She has graduated from her first level of swim class, and just comes alive in the water.  
Wanted to share an amazing video made by a friend, Mrs. Gina Jay, founder of One Hip World.  Lucy and Lily are in it, and it's amazing!  I will warn you, it's a total tear jerker… to see all of these sweet little faces, and know the suffering that they have been through… it just reminds us of why we need to keep fighting and why we spread awareness about hip dysplasia.  
Here is the video: 



Pretty cool, huh?!  
Since I haven't posted for awhile, I thought I should tell you that we are about to wrap up 2 years of physical therapy.  Wrap up, as in go to monthly or bi-monthly visits.  Not sure what we will do every Monday morning without our Miss Hilary!

Lucy also was referred for custom orthotics.  Her previous inserts weren't working with her severe ankle pronation.  We were referred to a wonderful place, Orthotic Specialists here in Phoenix.  Ms. Barb, the owner, is truly a gift.  A gift to her industry, a gift to parents, and a gift to children.  Meeting a person like her, who has so much love and passion for what she does, truly restored my faith in people.  A real blessing.




Barb taking a cast mold of her foot.  You would think she would be afraid of a cast, but no.  She thought it was a princess slipper!

Ms. Barb.  You're the bomb!

The reason she needs custom orthotics.  This is after a year of wearing arch supports.  Her ankles just roll in :-(

Our new HIP shirts!!! (The band-aid on her chin…all drama)
Order your cool shirts HERE

YAY for my baby!  She graduated swim!

Watching Barb in the lab trimming them down to fit
Here they are… HIGH arch on these puppies…
She chose blue since blue is 'my favorite color EVER!'
On our little vacation to the mountains!
Her dream has come true
Best. Day. Ever.  Ariel is her favorite!
My two slices of perfection
Doesn't everyone wear a crown to physical therapy?!


I also have to share.  On a hip group that I am not very active on, someone posted that they found a great blog with tons of info on DDH.  Guess who!?  That's right… yours truly!  It made my day to see that.  Hopefully I am helping someone out there!

Enjoy the rest of your summer!

xoxo

Karen and L squared!

Saturday, July 6, 2013

Summer time


Summa-summa-summa time!
Well, I am really not THAT excited that it's the middle of summer.  In Arizona, we have had temperatures that will fry your skin off!  118 degrees a few weeks ago... yuck!  We try to get all of our stuff done in the morning, then stay inside after noon... Gotta love Phoenix...
Anywho...
Today was a great day.  Lily had her 6 month precautionary x-ray with Dr. Segal.  She already had her 6 week ultrasound, and all was okay, but an x-ray will only show bone once the baby is 6 months.  All was great!  Her angles were 25 and 26, and her hips are in the socket and looking perfect.  Thank goodness.  She hasn't had any of the signs thus far, but it's been in the back of my mind for awhile... I couldn't sleep at all last night.  I kept thinking, 'oh my gosh, what if she has to have a surgery.'  I was scared.  We can put that to rest now.  Dr. Segal said for peace of mind, he wants to do a 1 year x-ray to give an all clear.  That will be right around the same time as Lucy's follow up, so I am hoping for a Christmas gift of TWO all clears!

We have been staying so busy getting ready for our San Diego trip!  We are taking Lucy to the beach to celebrate her recovery.  (Seems to be a tradition) We are going to La Jolla again.  Lucy LOVES the ocean.  She loves sand buckets.  Dolphins.  You name it.  Anything ocean- totally her thing.  I think that she must think the Bubble Guppies live there.  Hope she isn't disappointed... :-)  Maybe seeing Shamu will keep her mind off the guppies.

Today the wheelchair place came and picked up the wheelchair.  So glad to see that thing go.  Strangely enough, Lucy LOVED that thing.  I mean, LOVED it.  In the hospital, we decorated it with Bubble Guppies stickers, and we told her it was a Guppie stroller, and that the guppies sent it for her.  From that moment on, it was called a guppie stroller.  Every morning when she wanted to get out of her bed, she would say, Guppie stroller, mama.  Even the other day, as we were walking hand in hand to her Gymboree class, we walked past a handicapped parking sign.  She said, 'what's that?' and I said, 'a man in a wheelchair.'  She said, 'No, guppie stroller!'  Every time she sees anyone in a wheelchair, she gets excited and yells, GUPPIE STROLLER!  People are probably like, 'what is up with this?!'
So funny how kids are so awesome... She's at the perfect age to 'fudge' a little and tell her things to get her through.  If she would be a little older, she may not buy what we tell her. :)  Hey--- gotta do what you gotta do to get through the day.

Lucy's walk is improving, but still far from 'right.'  She flails her arms a lot for balance and is very weak on the operated side.  I always remind her when going up stairs or a curb, to 'start with your other foot.' When going down, I tell her to start with her right foot. (weight shifting over the left leg)... so that's a constant in our lives, has been for over a year actually.  May be forever... who knows.

Yesterday was 'one of those days.'  Just a lot on my mind and had a panic attack over Lucy's future.  I think with Lily's appointment, things just built up and I lost it a little... Hearing and seeing stories of what hip dysplasia has done to some people scares the be-Jesus out of me... I know I can't control it, I know I can't change it, I know a tree could fall on me tomorrow... Some things are just out of our control.  Days like yesterday is when I just say to Lucy, 'Mommy will ALWAYS fight for you and do everything she can to make your life the best EVER!'  Then she looks at me in between her Ipad games and says, 'yah okay... ice cream cone?!?'  Really deep, huh?!

Her scar is healing well, I am using the Mederma for kids cream every day and massaging it in.  Hopefully that will help it.  Dang- it's a big scar.  She was standing up in the tub last night and it took my breath away a little... it's long.  Her body is so little that it's just heartbreaking to see this huge scar on her.

Lucy is officially enrolled in a pre-school program!  It's only 2 days a week for 2 hours a day.  Just enough time for me and Lily to go grab a coffee and do some shopping. :)  Her BFF, Hannah is also going to pre-school at the same place.  Gonna be awesome!  The kicker is this... She has to be potty trained.  UMMMM... yah.  We started that months ago.  Then had to stop due to surgery.  So we are going to be in 'potty training boot camp' when we get back from our trip.  We are also moving her in to a big girl bed, and Lily into a crib and out of the bassinet.  Good times ahead.  Ha!  Wish me luck...

I have asked a few people from our hip group to do a guest post for me... I am so excited to get it and post it for everyone... One lady is from California, and the other is from England.  Both have been through this for too long.  They are going to have an interesting post...

That's all for now- but be prepared to be on 'photo overload' once we get back from vacation. :)  Last year she couldn't walk on the beach, so this year---watch out.  The babe in the pink tutu bathing suit will be taking over San Diego. (Let's just hope this same babe SLEEPS at night since we are all in one room... )



Here are some pics and video.  ENJOY!






Lily happy after a good hip report!

She is getting so big!  And yes, her braids melt my heart!

Two loves of my life!

Working those hips in the pool at Grandma's house

3 Farrish girls (excuse the no make-up, I have no time for it anymore)

Lily loving kisses form us!

Lucy rockin' her HOPE THE HIP HIPPO SHIRT while 'petting' her sister



Cousins <3

Dancing with her BFF, Hannah

Saturday, June 8, 2013

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.  Not normally any risk for hip dysplasia / DDH
Normal womb position.
Breech womb position. A risk factor for hip dysplasia or DDH
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
A baby's hip joint is mostly soft cartiledge (grey).
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
An adult hip joint is mostly hard bone (brown)
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.
Babies carried in a sling on the back with hips spread is helpful against hip dysplasia.
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.
Cradle boards and tight swaddling may make hip dysplasia worse.
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.
Asymmetrical Gluteal Creases - Possible Sign of Hip Dysplasia
This baby's gluteal creases are uneven (note yellow lines). The right gluteal crease is lower than the left.

Asymmetrical thigh creases may be a sign of hip dysplasia.
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.
Uneven thigh bone length may be a sign of hip dysplasia
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


Sunday, November 4, 2012

Hope and honor!


Happy November friends!
I wanted to do a special post today about a new, special friend that Lucy has.
Her name is Hope.  Hope the Hip Hippo!
I am truly honored to say that I happen to know the authors of this book... they are 2 beautiful, amazing and strong moms of little girls that are battling DDH.  Both of their beautiful daughters, Mia and Abby, have bilateral DDH, meaning both sides.  They were both picked up on late, therefore treatment has been very difficult and extensive.  (When I say 'late' I mean anytime after a few weeks old is 'late!  I believe their kiddos DDH wasn't found until after they were both 2 years old.) These 2 moms have seen a lot.  They have been through a lot.  They know the tough realities of DDH.  These are 2 women who had a calling to make a difference!

There is such little information available to parents regarding DDH.  I can't tell you how many times someone joins our Facebook group and is totally freaking out, with an older child, wondering how this was never picked up on.  I can't tell you how many times they aren't even aware that the treatments for DDH vary SO much from state to state, country to country.  There is no set 'yes or no' treatment plans.  I truly believe OUR children who are facing DDH now, are the 'research' for the DDH kids of tomorrow. 

I remember when I first found out about my sweet Lucy having DDH. I couldn't even get the words DDH out of my mouth.  It sounded too much like a 'defect' or a 'syndrome' and my daughter appeared 'normal.'  She laughed, she played with toys, she was starting to say words... It was the HARDEST time in my life, and I scrambled to find a resource to help me cope with what was ahead.  When you google DDH and see the pictures of a spica cast, it will seriously scare the pants off any parent.  Especially if your child is mobile.  Not to mention, how are you supposed to explain this to your child??  With Lucy, we couldn't explain anything to her since she was only 13 months old, so we had to have her jump in feet first and face the hard reality of waking up 'stuck' in a body cast.  (Makes me SICK thinking about it.)  There are just some events in your life that you can think about, and you FEEL the exact same way you did that day.  Those feelings and memories never will leave you.  This last year with DDH has been that way.  Even though we are 9 months post surgery, I still think about her in a cast and it brings me right back to that time.  No child should have to face DDH, let alone without any resources helping them to cope.

Parents of DDH babes, look no further.  

Gina and Julie are the authors of 'Hope the Hip Hippo.'  Hope loves to dance... she loves to play... she is a normal toddler.  She is diagnosed with Hip Dysplasia and requires surgery and a cast.  The book is for children, and it takes them on a journey with Hope through the hospital, cast and post surgery... It is so darn adorable... The book was recently released, so we ordered 2 copies.  One is for Lucy, of course.  I am going to write her a very special letter inside of it.  I am tearing up thinking about that, but I want her to know when she is able to read this book herself, that her mommy LOVES her, in a cast, out of a cast, and ANY road we have to take in life.  ANY road.  As long as I am in it with my husband and babes, NOTHING will stop us.  When the books came in the mail, I envisioned Lucy reading it to her kids someday, showing them what she went through as a baby.  The book represents how far we have come personally, but it also is upsetting to know that so many little kids are reading this while they face yet another surgery.  Bittersweet.

The other copy I purchased was for Lucy's surgeon, Dr. Lee Segal.  He has been our 'knight in shining armor.'  I owe my life to that man for being so wonderful to my daughter.  God brought us to him for a reason.  I am going to have Lucy put her handprint in it, and we will write him a short thank you note.  I also want to put in there, 'please Dr. Segal, pass this book on to the next little girl around Lucy's age that you diagnose with DDH.  I know her parents will be as scared as we were, so please, give them some HOPE.'  
What I really think he will like about the book is that his patient, MY Lucy, is mentioned in the dedication.  Yep, you heard it!  She is mentioned in the beginning of the book along with a few other children we know battling DDH.  Are we honored or what?!  One of the authors pointed out how much she appreciates my help to new parents that need it.  I am always here to help someone, since I know how awful it feels... I have a feeling someday- little Lucy will be quite the spokesperson and fundraiser for DDH. :) 
What I am saying is this book is a must have. Period.  If your child is facing surgery, it's a no brainer.  You have to have this book.  
Lucy has requested that we do a fun 'giveaway.'  Leave a comment in the comment section of this post, and tell us why you think HOPE will give your child HOPE.  I am going to 'pay it forward' and give 2 books away, shipped directly from the publisher to you!

If you already have a book, you can't enter the giveaway. (SORRY!)

If you would like to order a book, here is the link:
http://www.friesenpress.com/bookstore/title/119734000006629335
OR
http://www.amazon.com/Hope-Hip-Hippo-Gina-Jay/dp/1460200624/ref=sr_1_1?ie=UTF8&qid=1352068272&sr=8-1&keywords=hope+the+hip+hippo

It costs a bit more to order from the first link, but MORE $ goes to the IHDI.

                                     

Daddy reading HOPE to his favorite girl...


Lucy's review after reading the book!



SO CUTE, huh!?



Um, yes. You have read it right. 
2nd line, it says LUCY.  :)
The 2 pictures are the author's daughters... Aren't they sweet??





And in the words of HOPE herself....

Now if you will excuse me........... 


I have to go dance...............

(with Lucy of course!)