Happy Birthday Left Hip!!

Wow!! 3 Years!! As Ava told me this morning "It's my left hips birthday! I know it's actually 7 years old like me but it's 3 years that it's fixed. It wants a dress up dress to celebrate!" She cracks me up and I admire that she has taken each and every step in stride. It's been a heck of a 3 years but thankfully the last year has been uneventful and has given us so many reasons to celebrate.

Unfortunately there is no "cure" for hip dysplasia. Come teen years there is a possibility of future surgeries for Ava. We try not to dwell on that and encourage Ava to keep doing what she is doing. She has embraced her "fixed"hips and they have not stopped her from conquering the world. Irish Dancing has become her ultimate therapy. Her flexibility has come a long way and the rotation in the right hips has improved. Every time I watch Ava compete my eyes well up. She has come so far and is so strong!!


Help us celebrate Ava's Hip Birthday and Healthy Hip Awareness Month by raising awareness!!
Did you know????

• Hip Dyplsia means that the bones of the hip joints are not aligned correctly.
• Hip Dysplasia prevents the hip joints from functioning properly.
• Hip Dysplasia causes joints to wear out faster than normal.
• Hip Dysplasia affects thousands of children & adults each year.
• Hip Dysplasia is a "silient" condition, pain is not ussually felt until later stages.
• Approximately 1 of e
  very 20 full term babies has hip instability.
• Approximately 2-3 out of every 1,000 infants will require treatment.
• Many hip dislocations are difficult to treat with the current methods.
• Hip Dysplasia in adults is most common cause of hip arthritis.

Want to learn more??? For more information go to http://www.hipdysplasia.org/. Spread the word, early detection is the key!

I am so grateful for Ava's recovery and I look forward to see her continued growth!! Thank you! Thank you! Thank you, to all the people who cheer Ava on every step of the way! You guys are awesome!!!  Way to go Little Butterfly!! LOVE you to pieces!!! XO

My Little Irish Dancer

It has been three months since my last post. Ava is doing awesome! It's amazing how quicly she is growing and how strong she has become!!

"And though she be but little, she is fierce." ~ Shakespeare

I don't think there is a more fitting quote to describe Ava.  In the last few months Ava has come to love Irish Step Dancing. She practices for hours and doesn't stop until she's not getting it wrong. Even though she does not have full rotation in her right hip she pushes herself to move it correctly. In February she competed in her first Feis (Irish dance competition.) We were all so excited but didn't know what to expect. If you have never been to a Feis it is crazy!! There are people everywhere and the girl dance in groups of three until all everyone is done in there age group. I was in awe watching her, she had her game face on! You would never guess in a million years she had both her hips rebuilt! The smile on her face says it all! She is doing what she loves best and she's doing it well! Ava placed 1st in the "Jig" and 2nd in the"Reel". Not bad for a girl who was born with bilateral hip dislocation! 

Doing the Jig!

First Feis!

Practicing!

1st &2nd!

In March Ava competed in her second Feis. She placed 1st in the "Jig" and 3rd in the "Reel". Another great job!! Ava was less then happy with the 3rd place. The lack of rotation on her right hips doesn't allow her leg to get as high as the left and throws her timing off. After being upset with her results she became more determined then ever to get a 1st place in the reel. Ava decided she is going to fix her right hip. She stretches, does kids yoga and constantly practices her step. She has goals in mind and working her hardest to achieve them. I have no doubt she will achieve each and every goal! Sometimes when I watch her dance I still get teary eyed, it's hard to believe how far she has come. It's hard to believe 3 years ago she could not walk 5 minutes without complaint, now she is dancing her heart out pain free!

 

Not quite as happy this time!

Second Feis!

Look at those legs!!

I always tell Ava win or lose she should always be proud of herself. She has come so far and over come so much. I am unbelievably proud of her! Who knows what her future may hold but I pray those hips stay in place forever! With all her determination she will conquer the world! Keep dancing my sweet girl! Make all your dreams come true!!

Happy 2015!!!

Hard to believe it has been 8 months since I last posted, no news is good news!! Ava has been incredibly busy and thriving in every way possible. Dr. A said there are no restrictions in her activity and she has embraced it! Since my last post Ava finished her t-ball season, was in a ballet recital, finished kindergarten, ran 1 of 2 miles (walked the rest) in the Hip Hop 5K, started 1st grade, played soccer, is now taking Irish Step Dance, started basketball and has a new found love of roller skating! Whew!! She's an active little girl.

In August Ava had a follow up with Dr. A. Her visit went well and her hips look fantastic. We do not have to return until next July! Yay!! In October she turned 7 and had her well visit with Dr. K, thankfully Ava grew 3 1/2 inches (Yippee!!) but only gained a pound (boo!!). Since there was a significant growth in height there is not as much of a concern with her weight, although we would love to see her put on a few pounds. Dr. K sent her for another bone age x-ray. Ava is still 2 years behind in growth, meaning her bones are the age of a 5 year old and do not match her chronological age of 7. We will get another x-ray in April and if her growth does not change we will be headed back to the endocrinologist to find out our options.

 I still find my heart in my throat at times but love that nothing holds Ava back. On occasion she still says her right leg is her "bum leg"  but she always manages to push through it. Weather it's watching her play a sport, watching her dance or zoom around the roller skating rink I could not be more proud. She is one amazing little girl and I look forward to finding out the young lady, then adult she will become. She has the world routing for her!

Ballet Recital

T-Ball

Last day Kindergarten!

Hip Hop 5K!

First day 1st grade!

Soccer with her big brother!

Roller Derby Girl!

Great to be 7!!!!

Irish Step!

                         Happy 2015!! Here's to another year of healthy hips!! xoxo

Looking Good!!

Another perfect x-ray.

Hard to believe it is May already! Having two kids in sports and other activities makes life hectic as ever!! (Kudos to everyone who has more then two, I can hardly keep track of the two I have.) I have been running in fifty directions the last several weeks and I just realized I never updated after Ava's last hip check up. Back in March Ava went for her normal 6 month check up. As usual an x-ray was done to see how everything has healed and make sure all is well. Thankfully she had another perfect x-ray and things are healing nicely. My nerves are usually shot by the time a check up comes around so all this is music to my ears. In this visit I learned a few things that may or may not be in Ava's future. (I think Dr. A spreads out the information he gives me, especially the not so great stuff, so I don't completely lose it.) So anyway, somethings I already knew but some was new information. The thing about having hip dysplasia and having surgery (or any treatment) there are no guarantees.

Fact number 1... Many "hip" patients are treated young (which is best case scenario) but when  a surgery is done to recreate a socket the hope is the socket grows properly. That being said, Ava was only 4 at the time of her surgeries and has a lot of growing (and growth catch up) ahead of her. This makes her still high risk for hip dysplasia but so far so good her hips are growing with her, whew!

Fact number 2... It takes years for the hips to truly be healed. Ava had both sockets reconstructed, over time as the ball moves in the socket, the socket will become deeper. The deeper the socket becomes the less likely dysplasia will happen. So far, so good!

Fact number 3... After surgery full rotation in each hip may or may not return. Right now Ava's inner rotation is great but her outer rotation is so-so. Over time and with normal everyday movement it can improve. Ava's right hip is seated a little differently to help prevent it from slipping out, the rotation in this leg is far less then in the left. From time to time Ava will call it her "bum leg" or "the leg that doesn't work so well." It doesn't hold her back one bit and ballet has definitely helped in the movement.

Fact number 4... It is not uncommon that come the early teen years Ava may need more surgery. What?!?! This is news to me! In Dr. A's words... as the body grows the hips may need a little "tweeking." Our hope is that it will not be the case for Ava but as I was warned, during growth the hips can become displace. She will never (well hopefully never) have dislocation again but here is where the risk of dysplasia comes in. Our hope and prayers are that she never has to have surgery again!!

 I left the check up feeling good about Ava's hips and even the not so great stuff didn't have me down. Dr. A is very happy with her recovery and his hope that no further treatment or surgery is needed. ( I could not agree more!) I have complete confidence in his work and all he has done to help Ava. The next check up is in 6 months and I know her hips will continue to be perfect. In the mean time life is completely normal for Ava. It will be 2 years (hard to believe so much time has passed) since her first surgery. Her Kindergarten year is almost done and she has become quite the little athlete. She currently doing ballet, playing t-ball and come fall she wants to try Irish Step Dancing. Nothing holds this child back! I continuously watch her with amazement on how awesome she is doing and from time to time I get tears in my eyes as I watch. (I always wonder when I will stop getting so emotional over her every move.)

I look forward to watching Ava grow and see all the wonderful things ahead of her. Also, I look forward to the day that this is a distant memory! I have one strong little girl and I know one day what she has been through will lead her to great things!! My little butterfly is really spreading her wings!!

Look how far she has come...

       

        

Happier Days

It has been almost two months since I have blogged, I have to say I have missed it but it's always good news when I have nothing to report. Ava is doing fantastic! On February 10 (two years to the day of her first visit) she had a check up with her Endocrinologist. In the last 6 months Ava grew 1 1/2 inches, gained 3 lbs and her hormone level is in normal range. Yeah!!! We still need to take her for an x-ray to get her bone age checked but all is good.

On top of the world!

It's a wonderful feeling to see Ava just be a kid again. She has embraced her new found freedom but it has not been as easy for me. I still worry about her during certain activities but at least I no longer jump at every fall. When you watch her walk, skip or run you would never know she had surgery. In November Ava started ballet and she is really enjoying herself. Mid January was parent observation, this was the first time I could visibly see her limitations. Her right hip does not have full rotation so it makes it difficult for her do some of the moves. I have to say it broke my heart a little to see her unable to sit 'criss cross applesauce' or sit in a 'V' sit and keep her back straight. She tries hard and I love her determination but I think next year we need to do tap or hip hop.

In February Ava attended her first gymnastic party since surgery, I was very nervous about this. I gave her my normal lectures on the way about being careful. Her response was "I know Mom, I'll use my muscles and my core to be strong. If anyone is being to rough in the bounce house I will move away." She's got this down pat! Needless to say she had a blast! Her favorite activity was swinging on the rope and  dropping into the foam pit. My heart was in my throat watching her but the joy on her face washed that away. We survived! I'm not sure why I worry so much, Ava is the strongest little person I know.

Ava has embraced Kindergarten. She has made friends, joined Daisies and wants to play t-ball in the spring. Hard to believe in 3 months it will be 2 years since her first surgery, she has come a long way. On March 28 Ava goes for her hip check up. I have no doubt her x-ray will be perfect. For now life has finally returned to normal chaos along with Ava's feisty personality. (That's putting it kindly.) I'm always proud of my girl and feel so blessed that her recovery has gone so well. As always, thanks for all the love and support!! xoxo

Beautiful Princess!

Keep the good news coming!

Wow it's hard to believe it's 2014. Come February it will be 2 years since Ava was diagnosed with hip hysplasia. I would love to say "how time flies" but unfortunately for my family the last 2 years has pretty much sucked! Good riddance to 2013, hello 2014! I'm ready for some positive things to happen in our lives and I have faith it will. In the last 2 years my family has been through 2 hip surgeries, 96 days in a cast, 6 months of physical therapy, Poopa's (aka Tony/grandpa) throat cancer, David's elbow surgery, Ava's broken elbow with 4 weeks in a cast and we rounded out the year with my oldest sister having a bleeding stroke. Yep, life has been pretty crappy. I guess I could dwell on the negative but I choose to find all the positive in every situation. So here are all the things I'm grateful for... As sucky as it was, Ava has 2 healthy hips, she no longer has constant pain and is getting healthier every day. Poopa's treatment worked and is cancer free (now if he could swallow life would be great). David's surgery went well and is not in pain like he was before. Ava's elbow healed quickly and is finally able to just be a kid. Finally, I am beyond thankful that my sister is still with us.

As the end of 2013 approached I realized I never took Ava for blood work that was ordered in August, her endocrinologist wanted to check her hormone level. I didn't mean to put it off but the script was giving the day before she broke her arm. There was no way I was taking her for blood work after that! Then in November she went for her well check up and her pediatrician wanted to check her vitamin D level. So anyway here we were at the last day of December and I really needed to get the test done. It had been months since Ava had been poked and prodded and she was not happy when I told her she needed to get blood work. She cried off and on all morning and she cried the whole time in the waiting room. Once the time came for them to actually take the blood work she screamed like I've never heard her scream but once it was over she was back to her normal self. Thank goodness that was done and hopefully it will be a very long time before I ever have to put her through that again.

Well the good news is Ava's vitamin D is within normal range. So happy to have good news at last! Fingers crossed her hormone level comes back normal as well. (I am so done with doctors, as is Ava!) Next on the list, Susan's blood clot is gone. Although she has a long road to recovery, she is doing better every day. I know 2014 is going to be a much better year. It is off to a good start and I pray that it continues on this happier path. What I learned in the last 2 years is to be grateful every day for what you have, keep your family close and life can change in the blink of an eye. Thank you for the continued support and prayers. As we start the new year hug your love ones tight, be grateful for life and try to always find the positive in a bad situation. Thank you for all the continued prayers and support. I wish everyone a happy and healthy New Year!! Here's to a better year!! xoxoxo

Thankful Everyday!

My Healthy Girl!!

Like everyone out there, life has been crazy lately. It has been almost 3 months since my last post (which I guess is actually fantastic) because there has not been much to report . No posts means Ava is doing Fabulous!!! Since she had her elbow cast removed she has been nothing but healthy. Her hips look great and no X-rays until April. Yeah!! This fall she completed her soccer season (and boy can that girl run), started Ballet and embraced Kindergarten. In early November she has her annual well check and I was thrilled she gained 3lbs and grew just under 3 inches! Finally she is healthy and I hope it all continues! As for me I finally feel more relaxed about her every day life. I no longer flinch at every fall and feel completely confident those hips are staying put. I am feeling very blessed. Princess P is finally on an upswing and It feels great to be on the other side. I hope her story can bring hope for other parents and children going through hip problems. The journey is not easy but seeing your child without pain makes every step worth it!

Through Ava's hip journey I have used this blog to keep family and friends updated, help spread awareness and wrote in hope to help even just one child. Writing for me has always helped me relieve my anxiety, stress and fears. So although this is going to go off my usual topics I want to share a difficult time my whole family has been going through...

When I began this blog I gave a little family history on my own immediate family but really have not shared much beyond that. I am the youngest of five children, with a 16 year span between the oldest and myself. I have 6 nieces, 2 nephews, 3 great nephews and 1 great niece. Needless to say our family is large. Most of us are married or have a significant other and the Holidays are crazy with our ever expanding family. On October 28 my oldest sister, Susan suffered a bleeding stroke. I will never forget the feeling I had when I received the call that she was on the way to St. Luke's in Bethlehem, PA. She was stable but we didn't know much else. I think I have been through every emotion when Ava was in the mist of surgeries and treatments but this was completely different. All I could think is I need my sister here and losing her would be unbearable.

Sisters~ Me, Susan & June

Despite our 16 year age difference, we are close. There have been waves through out our lives that we have been closer then others but now that I am older we have so much more to share. When I was 4 Susan taught me to read, to ride my bike and bought me my first pair of Dr. Scholl's. ( I had to have shoes that made clicking sound when I walked, just like hers.) I was her flower girl at age 5 and spent lots of time at her apartment. Susan has taught me many things like how important it is to take care of my skin (if you look at hers, she is ageless), always wear lipstick, never go out with roots, always wax your eyebrows, all else fails, bleach it and the first thing you do when you move is change the toilet seats. (I think she has bought me one at every house I have lived in as an adult.) She finds the coolest trinket that suit both my kids personality and her house is one of their favorite places to go. Susan has always been like another Mom to me. She has a giving heart and prior to her stroke, she cared for a man who suffered a stroke as a teenager.

Dave & Susan

Susan spent 10 days at St. Luke's and is currently in Kessler for rehabilitation. My brother-in-law Dave has been her rock and has been by her side every step of the way. He is her advocate and the love between them is absolutely amazing. Susan is slowly getting better and has even began to take a few steps with help. In the next few weeks she will be able to return home and continue with out patient therapy. She is recovering quicker then my family could ever dream but still has a very long road ahead of her.

Her best friend has set up a foundation to raise funds to help pay for the accumulating hospital bills. I am asking all the people that have been such a great support through Ava's journey to please consider donating. Our goal is $10,000, so far we have raised $4,045! I know you have bills to pay and holiday presents to buy but a $1 goes a long way. If you would like to donate go to http://www.giveforward.com/ and search for Susan Snider. We appreciate all the support.

Susan at Kessler with Jack & Ava.

This Thanksgiving I am thankful for all I have. I am blessed with healthy children and a large loving family, especially blessed to still have my amazing, strong sister. Please pray for Susan's continued healing. Life can change in a instant so remember to appreciate all you have. Hug you loved ones tight and always tell them how much you love them! Happy Thanksgiving!! xoxo