I really wish for the next 3 weeks Ava could live in a bubble. Do you know how hard it is to keep a 5 year old from being too active?!? I know I am going to be a nervous wreck until we get the doctor's clearance. This could possibly be worse then after her hip surgery! At least then I was with her 24/7, now she will be out of my sight for 7 1/2 hours a day, 5 days a week. Fingers crossed she follows to Dr. A's instructions until our next visit. I look forward to 3 weeks from now when she is playing soccer on her first soccer team and once again free to be 5! Always an adventure with this girl!
Friday, September 6, 2013
Elbow Cast OFF!!
I really wish for the next 3 weeks Ava could live in a bubble. Do you know how hard it is to keep a 5 year old from being too active?!? I know I am going to be a nervous wreck until we get the doctor's clearance. This could possibly be worse then after her hip surgery! At least then I was with her 24/7, now she will be out of my sight for 7 1/2 hours a day, 5 days a week. Fingers crossed she follows to Dr. A's instructions until our next visit. I look forward to 3 weeks from now when she is playing soccer on her first soccer team and once again free to be 5! Always an adventure with this girl!
Wednesday, September 4, 2013
Kindergarten!
I had to go to Ava's school today to make copies and as I entered the first thing I saw was Ava's class coming down the hall on their way to Music. She was the line leader and had a huge smile on her face. Relief! Then in the office I ran into the gym teacher and it turns out that she was helping at the bus arrivals this morning. All my guilt of forgetting her name tag was now gone, thanks to Jack Mrs. hart knows Ava and she greeted her by name. David and I anxiously waited for the bus this afternoon. We could not wait to hear how both Jack and Ava's day was. As Ava was getting out of her seat her back pack got stuck. Big Brother Jack to the rescue! He carried it off for her. He's the best!! Turns out both kids had a great day. Our little butterfly did great on her own. I am so proud of Ava and I look forward to watching her grow in the year ahead!
Tuesday, September 3, 2013
1st Day of School Eve
When Ava's 'hip journey' began our number one goal was to heal her 100% before she started Kindergarten. At the time it seemed so far away but fast forward 18 months and here we are! For the last few weeks all Ava could talk about is starting. This was her first year to go back to school shopping (my little fashionista loved it!) and to pick out a back pack and lunch bag. You can only imagine her excitement when the letter with her teacher assignment came, she got the same teacher Jack had. This is huge, Ava adores Jack and all she has been saying since is "When I'm is Mrs. Ciniewtz's class I'll do......" (That sentence has a hundred different endings.) In preparation for the first day, each kindergarten student was given a paper camera to decorate with things they did over the summer. They are to bring it in the first day to share with their class. A few days ago we began collecting things to put on it. I was a little worried we would not have enough to fill it since we were home most of our summer, but sure enough we filled it up in no time. Ava include our only trip to the beach, a picture of her new baby cousin Emory, her Taylor Swift ticket, her visit to the ER, her cast, a few things from Boston and a her favorite picture from her 'hip walk.' She glued everything on and sprinkled it with glitter, then we practiced what she would would say to her class. My girl is ready to go!
I have been going through a million emotions this week. I am so excited for Ava! She is so ready for school (hopefully they can teach her to follow directions!) and having structure is what she needs. This last year has been "spoil Ava" because EVERYONE feels so bad for what she has been through. (Even a stranger gave her a dollar when we were out school shopping because of her current cast!) I'm also a little nervous to have her out of my sight for so many hours. I'm so use to my little side kick, it's going to weird not to have her around. I'm sure these first few weeks will be quite an adjustment for her (and me), she hardly went to Pre-K last year and is not use to so many hours. I'm sad to see my baby go but a little thrilled too. This last year we have had a lot of 'togetherness', so quite frankly she is on my last nerve! (I'm sure many Moms can relate!)
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So here we are the night before First Day of School Eve. Ava has her new dress laid out and her sparkly shoes (Aunt Susan will be proud) ready to go. We quizzed her a hundred times on what to say if a teacher asks why she is not sitting with her legs crossed (due to her right hip not having full rotation she, is unable to sit 'criss cross applesauce') and reminded her over and over to give her teacher the doctors note for the nurse. Tomorrow morning I will put my baby on the bus and I expect lots of tears (from me not her.) But I know it is her day! All her hard work has paid off, she is 100% ready. Tomorrow we will set our little butterfly free!! (I'm already crying writing this!) I wish my strong brave girl lots of luck and I know she will do great. All that Ava has been through makes her who she is. Look out world here she comes!!
| Back to School Collage |
I have been going through a million emotions this week. I am so excited for Ava! She is so ready for school (hopefully they can teach her to follow directions!) and having structure is what she needs. This last year has been "spoil Ava" because EVERYONE feels so bad for what she has been through. (Even a stranger gave her a dollar when we were out school shopping because of her current cast!) I'm also a little nervous to have her out of my sight for so many hours. I'm so use to my little side kick, it's going to weird not to have her around. I'm sure these first few weeks will be quite an adjustment for her (and me), she hardly went to Pre-K last year and is not use to so many hours. I'm sad to see my baby go but a little thrilled too. This last year we have had a lot of 'togetherness', so quite frankly she is on my last nerve! (I'm sure many Moms can relate!)
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)
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!
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!!!
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.
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!
| Ava and Emily |
| Owen, Laney, Jack & the star! |
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| Yeah!!!!! |
| Big Brother's 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.
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.
Wednesday, June 12, 2013
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!
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