A Walk for Healthy Hips!!

Not many people know what hip dysplasia is or how it can affect the rest of a person's life. I quickly found out 17 months ago when Ava was diagnosed. I found it amazing how little information was out there as we researched what she would go through. Hip dysplasia  is instability or looseness of the hip joint that affects thousands of children each year. Unfortunately hip instability is a silent childhood condition that frequently causes disability and arthritis in adults. Few people know that Larry the Cable Guy made a generous donation to help start The International Hip Dysplasia Institute (IHDI) after his son was diagnosed and he found there was little information and no consistency through the medical profession. (Visit http://www.hipdysplasia.org/ for more information)

Ava and Emily

We have been blessed with Ava's awesome recovery but I do worry daily what her future may hold. Like any foundation, money needs to be raised to help spread awareness and fund further research. I find this cause incredibly important (for obvious reasons) and want to do what I can to support it. I was so excited when the first ever Hip Hop 5k and family fun walk was announced. It was being held in Easton, MA which made it even better, our friends (and old neighbor) the Parker's live there! Our family immediately decided to sign up and 'Team Ava' was created. Through messages I met an incredible girl named Emily, who was diagnosed at 18 with hip dysplasia. Since she was diagnosed she has under gone numerous surgeries and has spent the last four years in either a wheelchair or on crutches. (Read more about her story at http://emi2hips.com/) Even with attending college, baking cakes and all that is on her plate, she became the coordinator to launch the first ever Hip Hop 5k!

Owen, Laney, Jack & the star!

As the day approached Ava and Jack were getting excited to see old friends as well as complete the 2 mile walk. 'Team Ava' raised $1510 and had a group of 13 people running/walking for Ava. On August 24 we took part, along with my brother Butch, his girlfriend Sherri, the Parkers and some of their local friends in the Inaugural Hip Hop 5k. It was an absolutely perfect day! There was a total of 307 participants and a total of $20,142 was raised! Yeah!!!!! (Well done Emily!) Best of all Ava walked 2 miles!!!

Yeah!!!!!

 In the last 17 months Ava has under gone 2 surgeries, one cast change (totaling 95 days in a cast!) plate and pin removal and almost 10 months of physical therapy to relearn to walk and help strengthen her muscles, and lets not forget a fractured elbow and ulnar! (Thankfully the fractures are small and she will only spend 4 weeks casted and has not slowed her down!) After completing the 5k I waited for Ava, David, Jack, Scott and Laney at the walkers finish line. My heart soared as I watched them approach and finish. She did it!! As I hugged her I got teary eyed and could not tell her enough how proud I was of her.

Big Brother's support.

Next week Ava begins a new adventure, Kindergarten! I am excited (maybe a little scared) for her and very grateful she will begin the year with two healthy hips! (Unfortunately her current cast won't come off until day 3 of school.) Who knows what her future may hold but right now I am enjoying my healthy, spunky, strong little girl. Thank you, thank you, thank you for all the love and support!

Our Family!

Team Ava!!!

Feeling Blue

Today we took Ava to get her hard cast on. Unfortunately her regular doctor was out so we saw the physician's assistant, Katie. Ava entered the doctors office very unsure and nervous. She asked over and over, "Will I be put to sleep?" "Will I get an IV?" "I don't want another scar." She even tried to hide in any corner she could find. David and I kept reassuring her this was nothing like getting her hips fixed and none of the above will happen. Katie came in to talk to Ava, she seemed to calm some but was still on guard. She picked light blue for her cast and reluctantly sat on my lap. She was really nervous and scared it would hurt when they removed the temporary wrap. Thankfully Katie was very gentle and slowly took it off. Once off she examined the elbow and determined Ava had two fractures on her elbow but everything was aligned and her growth plate was fine. (Something both David and I were concerned about this for the last 24 hours.)  As she put Ava's cast on she kept her calm and Ava seemed to relax once she realized it was not going to hurt. Ava will have her cast on 4-6 weeks. Next week she has a hip check up and Dr. A will determined the length of time.

Ava will enter Kindergarten with her right arm in a cast.(She's right handed.) This whole thing is unbelievable to me  and I am incredibly sad for Princess P. She has worked so hard to regain her strength for kindergarten, to play soccer, and take dance, now she will have to wait on everything. Everyone always says "kids are resilient" (a phrase I have come to hate) but to bad parents aren't. It is heart breaking to see your child in pain and I can't help but ask "why this?" after all she has been through. Luckily, true to form, Ava is already bouncing back. Little Miss Independent already wants to put her sling on herself and is trying to write with her left hand. She even colored a picture almost as well as she does with her right. She seems to be adjusting fine but I think it is going to take Mommy a little longer. I am proud of Ava's strength and hope the next 6 weeks will pass quickly.

Will it end????

It's been awhile since I've had an update to share. Ava has bounced back unbelievably and has loved having fun with no restrictions. The last few months have been uneventful and we have been enjoying a low key summer. She only has one more physical therapy session left and will be entering kindergarten in the fall. (She is very excited and more then ready!) When Ava walks or runs there is no detection that she had any surgery and people are always commenting how awesome she looks. In fact on August 24 our family will take part in a 5k and family fun walk in Easton, MA to raise money for hip dysplasia. It has taken me weeks to not be paranoid when Ava runs, jumps, climbs or does any other crazy activity she is taking part in. Slowly but surely we have let be her be 5. The strength she has regained is amazing.  So proud of this girl!!

Yesterday (August 7) we took Ava for a follow up with her GI doctor & Endocrinologist. We are very happy that she has grown in height and if the pattern continues she will grow an average of 3 inches per year. Yeah!! Unfortunately she lost a 1/2 lb since her last visit. Dr. T put her back on the appetite stimulant and she will return in October for another check up. We also will take her for a blood test to check her growth hormone level. (I am not looking forward to that!) It's recommended to get more fat and calories in Ava's diet but I'm feeling frustrated. (It's definitely easier said then done.) How do you get a child to eat more? There's no forcing her and being a picky eater makes it more difficult. I guess all we can do is do the best we can.

I have been enjoying having our active girl back and looking forward to her follow up x-ray on her hips. I have no doubt that her hips will be perfect and we'll be free for another 4 months. Then today happened... Ava and Jack were playing at a friends house and Ava fell off a large toy dinosaur and hit her elbow. She was crying hysterically and could not be consoled. Once we got home we gave her Advil and iced her elbow as much as she would allow. After an hour Ava was still crying off and on, refusing to move her arm and the elbow seemed to be swelling more. If one of us touched she was letting out a piercing scream, I know that scream all to well...Pain!! David and I took her to her doctor who suspected she fractured her elbow based on the bluish black mark and amount of swelling, off to the ER for an x-ray.

On the way to the hospital and even after being admitted Ava was crying and saying the same things over and over. "I don't want an IV!" "They're not going to put something on my nose?" "Is it going to hurt?" "I'm not getting a shot?" "I'm not having surgery, right?" But the most crushing one of all was "I don't want another cast!" After speaking to a doctor Ava was taken to get an x-ray but not without a fight. I couldn't hold back my tears while my daughter fought not to be touched. After the doctor examined the x-ray he confirmed she had fractured her elbow. He temporarily wrapped it and tomorrow we will go see Dr. A for another cast. After Ava's arm was wrapped she seemed to feel better and calmed down, she even decide she will get a blue cast because it's Daddy's favorite color. Words can't describe the feelings I've had today. I hurt so much for my girl. Please keep Ava in your prayers for a quick recovery.

One Year!!

Hard to believe it has been exactly one year since Ava's first hip surgery. In some ways it feels like it happened yesterday and in others it seems so long ago. I can still feel the emotion I had that day after walking Ava into the OR and the anxiety I felt waiting for it to be done. I will never forget seeing Ava in her spica cast for the first time, my first thought was "How are we going to do this??"  Well here we are a year later and we did it! This past year has been an emotional roller coaster but Ava has prevailed as I knew she would. I love seeing her active again and hearing her hardy belly laugh. She is back to being an a 5 year old again and I could not be happier. Who knows what Ava's future may hold but right now we are going to enjoy our happy, healthy butterfly!

Our Incredible Girl

It has been three weeks since Ava was released for all activity and she is doing fabulous! She heard the words "you can do anything you want" and full speed ahead she went. There is not a worry in her mind! (I'm still a nervous wreck but with each week it is getting better.) One of the first things Ava wanted to do was go to the park, out of everything climbing is what she missed most. Up the rock wall she went and the smile she had at the top said it all... my girl is back! Over Memorial weekend our family went to a picnic with a ton off kids. I watched her with a tear in my eye and a smile on my face take off with her friends. She was finally being a 5 year old with out a care in the world. To see her run is amazing, you can't tell at all that she had surgery. She has worked so hard to come this far. This mama is so proud!! 

This past Wednesday Ava returned to her GI doctor for her 3 month growth check up. I was on pins and needles to see how much she grew, we knew there was growth but was it enough? Is she finally getting healthy? I couldn't wait. The moment of truth... Ava had gained 2.3 lbs, grew a 1/2 inch and her BMI went from 3% to 10%. Yeah! Ava was finally in a healthy range! She's still small but she's growing!!! We took her off the appetite stimulant to see if she can eat enough on her own and continue to grow. We will return to her GI and Endocrinologist in August for another check up, hopefully this pattern will continue. I have to say life is good! Ava is healthier and stronger then ever! I watch her in awe every day and can hardly believe in 11 months my girl has become a different person. There is nothing better then hearing constant laughter and seeing that beautiful toothless smile. She is still stubborn, strong willed and challenging at times but I wouldn't change her for the world, those are the qualities that got her through this last year. Who knows what the future may hold for Ava but right now we are celebrating her healthy hips!! 

Free To Be 5!!!

A little over a year ago Ava was diagnosed with bilateral hip dislocation. I will never forget the heartbreak I felt the day we were told she would have to undergo not one but two major surgeries and spend weeks in a spica cast. The months leading up to the first surgery I was a mess. If I talked about it or people asked about what she would have to endure I cried. I think I cried every day leading up to the surgery anticipating what was ahead. I could not fathom Ava going through this or how we would deal with her being immobile for such a long period of time. I can't even describe what I was feeling inside the day of Ava's first surgery and I definitely did not want my baby going through any of this. I hurt for her, I cried for her and I was beyond scared for her. When seeing Ava in her spica cast for the first time my first thought was "How are we going to do this??" We had a huge challenge ahead but I also had no doubt we would do what it would take to help her heal and have perfect hips again.

Waiting for good news...

Well here we are 11 months after Ava's first surgery. Over those months Ava had to endure two surgeries, three cast, a cast removal, relearning to walk, run and move and finally hardware removal. It has been 5 1/2 weeks since her plates and pins were taken out and we have  anxiously been waiting for her bones to heal. Today was our follow up visit with Dr. A. Ava could hardly contain her excitement and I don't think I've ever seen her so excited to go to the doctor (nor I.) As always our visited started with an x-ray, after Dr. A came in with the news we all wanted... Ava was healed! She officially "graduated" and could go back to life as normal with no restrictions. Yeah! My baby did it! I couldn't even imagine this day a year ago but yet here we are. Ava will continue with physical therapy to regain flexibility and we will return in 4 months for another follow up x-ray. She will be monitored over the next year to make sure her sockets continue to grow properly and eventually she will only have to go once a year.

Celebrating with an ice cream cone!

Ava has been nothing but strong and brave through out this whole process. She has amazed me every step of the way and continues to amaze me each day. I love seeing her so happy and moving without pain. I am so grateful to an amazing surgeon and so thankful to everyone in our life who helped us along the way. By no means has this been an easy journey but I could not be prouder of my girl. I'm not sure if I will ever stop worrying but I will keep my faith that her hips will stay where they need to be. This truly is one of the best days ever, our little butterfly has been set free!!

Before and After

I See The Finish Line...

These were removed from Ava!

I've been a little behind on catching everyone up on Miss Ava's progress. The first few days after Ava's hardware removal were difficult for me, Ava didn't want to move and kept telling us that it hurt. For me it was like a flashback of the difficult time after her cast removal. I know it was only for a brief few days but to me it was like an eternity and I just wanted my happy girl back. Thankfully it passed quickly and Ava finally got her grove back but just in a slower pace.  On Friday April 12 Ava had her post procedure check up and bandage removal. As always the appointment started with an x ray. After reading the x-ray Dr. A came in to share the awesome news... her hips look perfect! Yeah!! Next came the part Ava dreaded the most...bandage removal. You would think after everything Ava's been through this would be easy but listening to her scream it was like they were cutting another cast off. In the end I had to remove them and Dr. A could only check out the incisions from a distance, all looks good. After all that Ava returned to her normal self and was excited to show off all she can do now. Dr. A showed us her before and after x-ray, wow what a difference! (I can't wait to get our copy so I can share them with everyone.) The body is amazing in how it heals itself (well with the help off an awesome surgeon.) Ava is on restricted activity until we return on May 10 while the holes from the pins heal. Let me tell you this is no small feat since Ava feels great!

The following week Ava returned to school. She was so excited, she had missed her friends. The difference in my sweet girl is like night and day. She is so happy and carefree, I cringe when I think about the pain she must of been in all those years. On the 22nd Ava had the last off her cavities filled. She screamed and kept saying she was scared. Oh how it broke my heart to see her like this, she was so sad and it took hours before she would smile at us and was back to herself. Bottom line is Ava is done! She has had enough of acting brave and being put through any procedure. I think she has hit her breaking point and anything from here on out she will put up a fight, (have to say I don't blame her.) During the last week Ava has grown in leaps and bounds. She is walking better, running better and riding her bike like a pro. She is so happy and it makes my heart soar when I hear her laugh and just be a happy five year old. Looking back I never realized how unhappy she was or how pale she looked. Her body is filling out, she has color in her face and over the last two months gained 5 lbs!! She is getting excited for kindergarten and is looking forward to going to dance and giving soccer a try.

I am counting the days until our next appointment. If all looks well Ava is free to be normal 5 year old!!! After a looooong 11 months she will be healed and can resume all normal activity. Ava will have to return for periodic check up x-rays to monitor the growth of her sockets and to make sure the balls stay in. Over the next few months she will continue with physical therapy to help get her range of motion back, strengthening her muscles and help her flexibility. Please always keep Ava in your prayers that her hips stay strong and perfect. I am counting the days util May 10th, this time I can see the finish line. xoxox