HIP HOPE HURRAY !!

GUEST BLOGGER: TEAM AVA

GUEST BLOGGER:  Team Ava

by:  Theresa Boylan

My name is Theresa and my husband is David. We are blessed with two phenomenal children Jack 7 and Ava 4. Overall both our children were healthy happy babies and have grown into healthy children. Ava was 8lbs 4oz at birth but as she grew was always a very petite baby, then toddler. By 18 months she was no longer on the growth chart and her growth had slowed tremendously. At first it was not a concern because the chart was moving (slowly) but around 2 years old she did not grow for almost a year. Around the same time she was becoming very verbal and began complaining of knee pain, leg pain, back pain and that her belly hurt. Some days Ava would be crying from the moment she got up, some days it would start later in the day. Whenever out she always wanted to be carried or in her stroller and cried her knees hurt too much to walk. By now she was on a weight watch every 3 months and I raised my concerns often. Unfortunately there were no visible signs of anything wrong and developmentally she was 100 percent on. Ava’s walk was off but after bringing it to our Pediatrician’s attention we were told she was fine and would outgrow it. Finally in January (2012) I requested that Ava be sent to a specialist to try and find a reason for her lack of growth, if nothing else put our mind at ease.

In February Ava had an appointment to see a Gastroenterologist and Endocrinologist to finally start looking for answers. She was sent for what blood work and a full body x ray to measure her bone age and to have a baseline of her bone structure in case it was needed in the future. I will never forget the call I received from the Endocrinologist at the end February, Ava’s bone age was at 2.6 years (she is 4.4yrs) and she had bi lateral hip dysplasia. We needed to make an appointment with a pediatric Orthopedist immediately. What!! How could that be possible! I was in shock. On March 12 Ava had her first orthopedic appointment. Of course I had done my internet research and read whatever I could about hip dysplasia. I was surprised on how little information was available and what I did find was not sounding good. Needless to say I was a nervous wreck. I knew in my heart that I was about to hear something I did not want for my daughter.

Upon meeting Dr. A we all liked him immediately, most importantly Ava did. We started with another x ray to see exactly what was happening with Ava’s hips. Dr. A reviewed the x ray and delivered the news I did not want to hear… Ava had bilateral hip dislocation that she was most likely born with. Tears sprang to my eyes immediately knowing what this meant… The only way to fix this was surgery. He proceeded to explain what would need to be done. Ava will have an open reduction surgery which included a Capsulorrhaphy, Abduction lengthening, a Pelvic Osteotomy and end with a Spica cast. In layman’s terms he needed to put the ball back in the socket and everything around it needed to be reconstructed to make that happen. Not once but twice and an approximate total of 12 weeks in the Spica cast. By the end of this appointment I did not hear a word Dr. A said. I was beside myself and walked out dazed. I sobbed the whole way home and for days after I could not talk about it without crying. How do I put my baby through this!! How was this missed for 4 years!!!

On June 12 Ava had her left hip surgery. It took 4 hours and 50 minutes…The longest of my life so I thought. I’ll never forget the feeling inside me seeing her in the cast. My heart broke for my little girl. All I could think was how will we do this!! Ava did amazing and came through with flying colors. We spent four days in the hospital and 5 weeks in her pink cast. On July 18 Ava had her right hip surgery which lasted 5 hours and 15 minutes. She spent only 3 days in the hospital and will be in her purple cast for 4 weeks. When they remove the Spica cast she will then have a Petrie Cast for another 3-4 weeks.

Having a child in a Spica cast is an emotional roller coaster. It has many difficult moments but you learn to take it day by day. My heart aches for Ava every day knowing the pain she has and will endure but children are resilient! They actually handle things better then you. You learn to stay positive for them even when you’re crying inside. It is so important to raise awareness on Hip Dysplasia. As a parent until the day I received that call I knew very little about it. Doctors need to explain what it is and the research needs to be furthered so treatment can get better. It turns out Ava had the “waddle” of dysplasia and other signs that were over looked. If I had the knowledge maybe she would have been diagnosed sooner. I am so grateful to the International Hip Dysplasia Institute. I have received so much information through their sight and links attached to it. No parent wants to put their child through this and it’s great to have the support you may need to get through it.

If you have a child that was diagnosed with hip dysplasia remember you’re not alone. There are so many people out there willing to help. Remember each case is different and you need to think as positive as you can, otherwise you will drive yourself nuts! My baby is on her way to recovery and I hope so is yours! Spread the word and stay strong!! XOXOX

Read Ava’s whole story at www.boylan2001.blogspot.com. 

Together we can....together we will !

GUEST BLOGGER: TEAM ADDISON

GUEST BLOGGER:  Team Addison

by:  Kristy O'Connell

Our journey with hip dysplasia started in 2010 one day after our daughter Addison was born. She was born with bi-lateral hip dislocation. She was put into a Pavlik Harness at 5 days old and wore it for 3 weeks. It corrected her left hip but the right was still a problem. She was put into a Hewson brace for 12 weeks and when that still didn’t work they scheduled a closed reduction.

 
We were devastated! As if having you first born baby in a brace wasn’t bad enough, we were now faced with having our sweet baby girl in a full body cast for 3 months!! What would we do?? How would we diaper, bath, feed, even go to the grocery store!! The day of her open reduction I was a mess! Addison was such a trooper though! She played in the pre-op room and was so happy (even without anything to eat.) All went well and we arrived home to start our journey.  As the days and weeks went by things got easier and pretty soon we were pro’s! I swear I am MUCH better at diapering a casted baby than an uncasted one! When cast removal day came, we were ecstatic!! How great it was to have our smooshy baby back!! Addie had to wear the hewson brace full time for a few more months and then back to nights only. We were optimistic with each Dr’s appointment and really hoped our journey was coming to a close. Unfortunately, her hips were not progressing and a Salter Osteotomy was scheduled when Addie was 15 months old. We were so scared! I couldn’t even think about them cutting my daughter’s hip bones and pinning them without getting sick to my stomach.  This surgery was so much worse than anything we had been through! Addie spent 7 days in the hospital and was in such extreme pain! It broke my heart to see her so miserable. At to top it all off…..she contracted staph while in the hospital!! She lost 4 pounds and was very sick! After about 14 days she finally started to get back to “normal” and the task of entertaining a toddler in a cast began! Luckily we only had this cast for 5 weeks.  Addie is now 1 year post op and doing amazing! She started walking at 21 months and now you would never know that she ever dealt with this! She is such an amazing little girl.  I am inspired by her spirit everyday!

Through all of this we have been amazed at the lack of information and consistent care in the medical community. Addie actually has CDH (congenital dysplasia of the hip) and her grandma had the exact same surgery in 1960. I’ll say it again, the same surgery 52 years later!!!!! How crazy is that?? There are so many children and adults that have this condition and the standards of care have not changed in over 60 years!!! With all the medical genius in this world, there has got to be a better way to help! I am committed to help One Hip World and the IHDI because I cannot bear to think of all the families that have to face this devastating journey!

What I have learned from this is that my baby girl is the strongest, most talented and amazing child! She suffered through all of this with humor, strength and tenacity! She got us through!
 I am the proudest Mama EVER!

Of course I have to mention the support I received from friends, family, Hip-baby.org and the Baby Center community chat groups….without you we would never have pulled through this ordeal!  God is great and has blessed us in more ways than we can count! We have a beautiful healthy amazing little girl and He pulled us up from the ditches over and over again!

Thank you for listening to our story!
We hope that all your little ones have continued success
and happiness through their DDH journeys!

Together we can…..Together we WILL!!!
-Kristy


For more on our journey visit:   www.onehipblog.blogspot.com

together we can....together we will !!

New Participant logo/banner

Feel free to download to post and share 

on your blog, Facebook page, 

or wherever you are !!  

Using the image to create a 

link back to us would be 

VERY much appreciated !!!!

THANK YOU !!!!

Together we can....together we will !!!! 

Drum roll please...... ;)

First year goal of $10,000 met 

and exceeded !!!!!!!!!

And more coming in !!!!

God bless you all, and thank you so very, 

VERY much for being a part of 

One Hip World as we support the:

Together we can....together we will !!!

More than just a day....

While you already know that One Hip World Day 

is and will always be celebrated on 

June 30th of every year, 

we are happy to say that we are 

expanding our mission and purpose

 to 'year round' !!!!!!!  

We will no longer call One Hip World 

a "one day event"....we will now call it 

"fundraising supporting the IHDI" !!! ;)

This is such exciting news !!!! 

Your reception and participation 

have been astounding, 

and we are so grateful !!!  With that in mind, we have decided that since the 'need' is year round....so shall our efforts be !! ;)

Anytime you are ready and able to plan a 

fundraising event, go right ahead !!!!

Know that we will be here to help you as much as we can, and will cheer you on !!!

Please visit our facebook page to let us

 know of your plans....and to keep us updated !!! ;)
(see facebook logo on left for link!!)

And, please remember, that all funds raised 

get sent directly to the IHDI !!!

We could not do this without you, 

and believe me, we are not dumb enough to try !!!! ;)

YOU are making the difference !!!!! ;)

THANK YOU !!!!

Together we can.....together we will !!!

TOTAL UPDATE:

Way to go everyone !!!!!!

Thank you so much 

for being part of 

One Hip World !!!

more to come.....

Together we can.....together we will !!