Tuesday, August 27, 2013

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!!!





Friday, August 9, 2013

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.

Thursday, August 8, 2013

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.