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

Elbow Cast OFF!!

Today Ava had her cast removed. After her last cast removal she was in a lot of pain. That was her only experience so of course it made her extremely nervous this time. After arriving at the doctors office the nurse came in to cut the cast off, Ava immediately started to cry. We kept reassuring her it would be fine but she was anxious. As the nurse began Ava realized we were right, it didn't hurt at all. She said "It tickles!" After the cast was completely off she was a little scared to move her arm but thankfully she was not in pain. Next was x-ray time, three were taken. Dr. A came in for her exam. To our (and I think his) surprise Ava had three fractures not two as he originally thought. She is 95% healed but thankfully another cast was not needed. He wants her to start using her arm but to be very careful. For the next 3 weeks she is not allowed to participate in gym, play soccer or go on playgrounds. After the 3 weeks Ava will have another x-ray to make sure it is 100% healed, if so she can return to all activities.

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!

Kindergarten!

I'm happy to say Ava had an awesome first day of Kindergarten! She was up bright and early, couldn't wait to put on her new dress and asked every 5 minutes "Can we go out to the bus yet?" After the required first day of school pictures we headed to the bus stop. When the bus arrived she had a moment of panic, "Where do I sit?" she asked. Luckily Jack was there to help her out. The look on her face as she entered the bus made me nervous and as the bus pulled away I cried as expected (but not as hard as I thought I would.) After coming inside I realized Ava's name tag was still sitting on the counter, I felt horrible! How could I forget?!

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!

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!

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!)

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!!

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.