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.

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

Two Days Later...

Currently Ava's favorite movie is Brave. The main character Merida is a feisty, free spirited, strong willed girl with red curly unkempt hair.  She stands her ground and makes it known that she wants her independence and have control of her future. Ava has Merida's dress, bow and arrows and has even asked if we could dye her hair red (that would be no!) so she settled for Mommy curling her hair instead. I think unbeknowst to her, Ava really relates to Merida. She has that same fierce independence in her and strength that amazes me every day. I believe that strong willed personality is what got Ava through these last 10 months. She has amazed me day after day and I watch in awe as my girl walks, skips, hops, jumps, runs and dances. She has come so far which is why I think I have found these last few days frustrating.

When Ava woke up this morning we found blood on her blankie, the bandage on her right leg had leaked. We needed the bandage changed but knew she was not going to be happy about it.. After explaining to her what we had to do, we tackled the problem head on. With Ava screaming and crying (and David holding her) I managed to get the old bandage off and replace it with clean gauze. It wasn't as bad as I thought it would be but I hate seeing Ava so upset. Over the past few days Ava as refused to move. I understand she has discomfort and pain but I know it can't be in comparison to her previous surgeries. What happened to my brave girl? She cries, screams "It hurts!" and tells us she's going to lay on the couch forever, I don't think she reacted this bad after her final cast removal. The last 6 months I watched Ava conquer obstacle after obstacle head on. If something at PT was difficult I would catch her practicing it at home while she thought no one was looking. She is my Merida.

I'm having a hard time seeing Ava like this. It is frustrating to have a setback after she has achieved so much, I thought we were past the tough stuff. I know this is our last hurdle but hard to watch after weeks of her being herself again. It's unlike her to be so scared and not fight harder. I know this to shall pass and in no time my girl will be back. Please pray for her healing (and my patience) so our little butterfly can fly high again. I can't wait to have my brave Ava back!

Final Surgery

Blowing bubbles with Daddy.

On Tuesday Ava went back to the OR for her final surgery... plate and pin removal. I could not wait for this day, it means we are a step away from Ava's hips being fully healed. Ava was a little weepy as we got into the car, she even brought Jack's favorite bear to hug on the way. Upon arriving at the hospital she was in good spirit but once we were taken back to our prep room she began to cry and kept saying "I'm scared!" Dave and I could calm her down then a few minutes later she would start up again. She got weighed and measured and to our surprise she weighed 30 lbs!!! (This is huge, that means she gained 3 lbs since March!) We were all elated. We got Ava changed and tried to distract her any way we could... bubbles, coloring, playing games on my phone and reading a book. Dr. A came in and Ava seemed to calm some, then the Anaesthesiologist came in she kept telling him she didn't want an IV. That's the funny thing about Ava, she wasn't scared of the surgery but of the IV. This is the one thing about any procedure she hates. Then my least favorite thing began, taking Ava back to the OR. It doesn't matter home many times I do this it does not get easier. There is nothing worse then holding your child as they cry and scream while they put her out. As usual I held it together until she was out then I cried my eyes out.

Recovery...

This time waiting was not nearly as stressful as the first two surgeries, I knew this time would pass quickly. At about an hour I got antsy and began my pacing. After exactly an hour and a half Dr. A came out and said all went well and Ava could go home today. (Ava will be thrilled with this new.) Ava woke up slowly but was not happy to see the IV. We got her calm and coaxed an ice pop in her. As she came around the nurse came to take the IV out (this is even worse then having the IV in) so we could get her ready for home, we convinced her that it was just tape she had to take off and the nurse removed it. Getting Ava dressed was an event. We needed to get her underwear and pants over both her bandages, not an easy task since her legs are extremely sore. It took a lot of effort between David and I but we managed it and off we went. Ava slept most of the ride home. Moving her is very difficult because her incisions are on the side of each of her thighs. David managed to get Ava out of the car and safely onto the couch where she spent the rest of the day. Her legs are very sore and she refusing to stand or walk. We had pretty much force her to use the bathroom by carrying her there and holding her the whole time. Thankfully she slept through the night and got a good nights sleep.

Home Sweet Home

Today Ava seemed to feel better but is still refusing to move much. She keeps saying her legs hurt but I also think she's scared if she stands there will be pain. It's hard to explain to a 5 year old the more she moves the better she will feel. Both of Ava's bandages are covered with a clear tape to keep them sterile possibly causing her skin to feel like it's pulling. Last night both David and I became concerned with her right leg. At the hospital David noticed some blood on the bandage but by night it was covered. We put a call in to the covering doctor, he told us oozing is normal for the first 48 hours and to keep an eye on it. This morning it seemed like there was more fresh blood. After much contemplation I put a call into Dr. A with my concern. He said to keep an eye on it until tomorrow, he wants to keep the sterile bandage on for another day. In the mean time we could cover it with another bandage (so we can't see the blood) and tomorrow morning we can change the bandage. Ha! That's funny! Ava won't let us look at the bandage never less cover it! Unfortunately Dr. A is in the office furthest from us tomorrow. I can't imagine Ava will willingly let us change her bandage and it may be worth the long ride. I can guarantee she will not go down without a fight and I'm pretty sure that's not a fight I'm willing to have.

Hopefully tomorrow Ava will wake in less pain and we can get her moving more. We have our follow up visit with Dr. A a week from Friday. He will remove the bandages (at least one) and take an x-ray. I can not wait! Ava should be moving better by then and x-ray will be reassurance that she has two healthy hips! What a crazy 10 months this has been but there really light at the end of the tunnel now. We have been so blessed with everything going as planned. Slowly my girl has regained her strength and I know she will fight through this next week. As always thank you for all the support and love! Our awesome family and friends have definitely made this road easier! My Ava is the strongest girl I know! xoxo

More Dental Work!

So sad.

Last Monday Ava returned to the dentist for her 'baby root canal'. I have to say she did amazingly well. I had no idea what to expect since we have had some really bad experiences. She yelled some, she cried some but she laid still... the most important part. Even with laughing gas and Novocaine Ava was her sassy self (no clamp will keep my girl from talking) but thankfully Dr. Steve kept his patience and his calm demeanor. (It took me everything I have to not burst into tears.) After an excruciating 45 minutes we were done and on our way. Ava was exhausted and fell asleep on her way home. Once home she rested (I ordered Merida's bow & arrow I had promised her) and Daddy brought her home a huge milkshake. After a few hours Novocaine wore off and she was back to herself, only now she has one more silver tooth. Once again Ava showed us how strong and brave she is, I hope she keeps it up because at the the end of April she has to get two more cavities filled. It never ends!

My loves.

Ava had her last physical therapy session last Wednesday for a few weeks. Tomorrow she will return to the OR for her final surgery, plates and pins removal. A half hour each leg for the removal, one hour...piece of cake compared to her past surgeries. If all goes well we will be going home the same day. (Lets hope so, Ava is insistent we will not stay at the hospital.) We started prepping Ava about a month ago, at first she would tear up and say she didn't want to but after a month of talk she is completely fine with it. In fact she want to ask Dr. A if she can keep the plates & pins for show and tell in Kindergarten. Talk about a turn around. I'm sure Ava will do awesome and be her brave self. A few days of rest to let her incisions heal and she'll be running and dancing in no time. After a few weeks off she will return to physical therapy to help her gain more of her flexibility and strength back.

My "Brave" girl!

It's hard to believe it's been almost 10 months since her first surgery. I think after to tomorrow I'll finally feel like we are on the other side. Please keep my girl in your thoughts and prayers tomorrow. Princess P is almost there! xoxo

The Dentist...again!

And so Ava's journey continues... On Monday Jack and Ava went for cleanings at the dentist. This is an appointment I had been putting off for Ava because of her past dental issues, needless to say she tends to be less then cooperative. Honestly I don't blame her, she's had more dental work done before the age 3 then most adults have in a lifetime. Jack had a great visit (besides needing braces one day) but unfortunately Ava was not as lucky, more cavities! Really?!?!  Can't my girl catch a break?! The family dentist referred us to another pediatric dentist better equipped to fill her teeth. So today Ava and I made a visit to her fifth dentist. Yep that's right Ava's on dentist 5!! Oh the dread I had before this visit (I think I ate everything insight!) Ava right away was whining and crying that she didn't want anyone coming near her teeth. The pep talk began last night and continued all morning, finally I convinced Ava that he was just looking at her teeth, counting them and no work would be done today. The negotiation began... Ava "Can I get Merida's bow & arrows?" (I think we own every My Little Pony.) Me "Yes if you don't cry and let the doctor check your teeth. Also when you get the filling you have to try your hardest to listen." Ava "Okay I won't cry!" Ava is true to her word, she met Dr. Steve and behaved the best I've ever seen her behave at the dentist. She was so cooperative and proceeded to tell the dentist  about all her surgeries, casts and how she got her teeth pulled (glad she left out the part about biting the dentist.) Wow! This can't be my daughter...Did we finally find a dentist she likes?? She wasn't screaming and someone finally got a good look at her teeth.

After giving the condensed version of Ava's history (oh how this story is getting old) Dr. Steve gave his insight of why Ava's teeth keep decaying. Ava is an early tooth developer and unfortunately her teeth are not strong. Being a frequent eater is not helping. Her teeth never get a break causing food particles to constantly being left on her teeth which eventually breaks down to sugar causing decay. Drinking through a straw does not help and we need to limit how often she eats and drinks through out the day. (Easier said then done.) What a frustrating piece of the puzzle. We need to get better control of her eating patterns (not an easy task when all you want is for your child to eat!) and need to help her choose healthier choices (unfortunately she inherited my sweet tooth.) Everything Dr. Steve explained makes sense but I still feel Ava's growth problem has something to do with her tooth decay. If her bones were not growing properly for so long, how can the teeth not be connected? Now the part I really dread... Monday Ava will return to Dr. Steve to get a tooth filled and capped (it's that bad.) I'm so sad for her, she will have another silver capped tooth and unfortunately it's a tooth in the front. We will return for another appointment to fill the other two fillings in the back but for now the worst will be done. I hope Ava keeps up her positive attitude, it's just one more thing my girl has to endure. The prep work has already begun and hopefully in the next few days I'll get her to come around to being cooperative again. After our appointment today we searched 3 stores for her bow & arrow, I guess Merida is popular these day because we have no luck finding one. (Hopefully by Monday I find it so I can keep my word as well.)

 There are days I feel like this is never ending and there are days I can not believe how far Ava has come. All I want for my daughter is a day that she can just be a kid. No worries about how she's walking or running, a day where I'm not reminding her to watch how her legs turned or a day that she can walk up stairs and I'm not saying "Alternate feet, please." I look forward to a day this is behind us and Ava can do all the things she loves again without me on top of her & worried she'll hurt herself. Please keep Ava in your thoughts and prayers Monday! I'm sure she'll be super brave!! xoxo

AAaaaHHhhhhh!

The last few weeks I have been so happy that things are going so well for Ava. Such an amazing feeling knowing so far her two hip surgeries have been successful. Everyday her walking, running, jumping and overall movement improves. I am so so proud of her and find it hard to believe that it was a year ago that I received the call saying Ava has hip dysplasia and we needed to find an orthopedic doctor immediately. Just thinking about it brings back so many emotions. So here we are a year later and  8 months since her first surgery and almost on the other side of it. Now that Ava is doing so well it is time to revisit her growth issues and do a follow up with her GI doctor and Endocrinologist. Ironically if it wasn't for the growth issue who knows how long her dislocation would have went undiagnosed.

This past Monday Ava had her follow up visit with both doctors. We went to the appointment with high hopes and feeling really good about her recent growth. Well my bubble was burst and it has taken me two days to write about it because I'm not really sure how I feel. We saw Dr. T (GI) first and was happy to hear Ava had no weight loss while she was in her cast but not thrilled she has not gained any since. (She is the same weight as before surgery.) She put her back on the appetite stimulant and now we wait and see. We have another check up in 3 months. I find it so frustrating! Ava is definitely eating better and more then she did in the past. (Don't get me wrong she has off days but her intake is more.) On to Dr. B (Endo). He was happy to see she had grown but unfortunately it was not enough. She is barely on the chart for height and zero percentile for weight. Really?!?! Thankfully we do not have to take her for more blood work but we will return in 6 months to check her progress. If Ava's growth pattern does not change over the next year he wants to discuss the possibly of giving her growth hormones to help her grow. Not the news I was hoping for!

I am so sad. I had high hopes that Ava's numerous doctors visits were going to come to an end but I guess that is not going to happen anytime soon. Yes Ava is tiny and slim and I have no doubt she will be petite her whole life but it is my understanding (from past visits) it's not Ava's size that's really the concern (lets face it she's not exactly from a family of giants,) it's the inconsistency of her growth pattern. At a young age Ava dropped off the charts and her progress does not have a smooth consistent curve like other children. I'm not really sure how I feel about growth hormone therapy or if we'll even do it. I guess we'll cross that bridge when it comes.

In the mean time (besides worrying about her growth) Ava's next surgery is scheduled for April 2 to remove her plates and pins. I so dread putting her under anesthesia once again but thankfully this is only an hour procedure, piece of cake compared to what she has already undergone. After her healing of both incisions Ava will continue with physical therapy to regain her flexibility. (I can't wait to see her sit 'criss cross applesauce' again!)  I can hardly believe tomorrow I will register her for Kindergarten! It's a bittersweet feeling, my baby is growing up and my constant companion will be at school full time, how time flies! Please continue praying for our little butterfly!! (May her hips continue to heal perfectly and there be a major growth spurt before September!)

Healthy Hips!!

Meet my daughter Ava. She is a beautiful, fun loving, happy, strong and brave 5 year old. She is strong willed, sassy and full of life. She has this amazing laugh and incredible smile that will just make your heart melt and she has shown undeniable courage and strength over the last 8 months. Ava was born with bi lateral hip dislocation and a year ago we had no idea. At the time she was the size of a two year old and had not grown much in a year. She threw fits and complained of pain daily. A year ago Ava's life was changed forever when her endocrinologist found her hip dysplasia. Next month will be one year since Ava got her official diagnosis and things were set in motion to heal our beautiful butterfly. I will never forget that day and the heart break I felt for my daughter. How would she endure this? How am I going to let her be put under anesthesia...twice! How will she bare the pain and spend 3 months in a cast? I remember thinking how unfair this was and why my daughter??? My eyes still well up every time I think about it but now I have happy tears and can never express enough how incredibly proud I am of my daughter. Fast forward 8 months...since her surgeries Ava has relearned to walk, run, gallop, jump, climb and is finally growing. She is undeniably happy and has a smile on her face  more often then not. She is still stubborn, strong willed and difficult at times but I would not change these traits in her for the world. These are the things that helped her endure all that she has gone through and helped her heal and regain strength.

On Friday, February 8 Ava had a follow up visit with Dr. A. Right before every follow up I get incredibly anxious. The unfortunate thing about hip surgery is there is no guarantee, each patient is different and sadly many kids have to undergo multiple surgeries to fix their dysplasia. My worst fear is the ball slipping out of socket because the socket is not developing properly but after Ava's appointment I feel confident that Ava is beating the odds and will fully recover (even with a late diagnosis.) Ava was in a great mood at the doctor's office and took her x-ray like a pro. After reviewing the x-ray Dr. A gave us the news we were hoping to hear...Ava's hips look great! (Yeah!!!) The balls are in the socket and her socket growth looks great (even with Ava's rapid growth...3 3/4 inches since surgery,) my fears were set at ease. Ironically, Ava's lack of growth may have helped keep her sockets from growing improperly. With the help of the Pelvic Osteotomy her sockets appear deep enough and are allowing the ball to move properly. Thankfully Dr. A agreed Ava's plates and pins should come out sooner then later. Being Ava is so thin you can feel then through her skin and may be cause of some discomfort (most children have a layer of fat between the hard wear and skin) and maybe keeping her from regaining her flexibility back 100%. Hopefully the first week of April Ava will undergo the last of her surgeries for her plate and pin removal.

January 2013...

June 2012...

 I have to admit most of the ride home after Ava's appointment tears ran down down my face. I am so incredibly grateful that my girl is on her way to a full recovery and I am beyond thankful for all our support and continues healing prayers for Ava's recovery. I am finally breathing a sigh of relief and have complete faith that Ava's journey will one day be a blip in her life. Come June we will be celebrating one year of healthy hips and I will forever be grateful to Dr. A for healing my girl. True to her personality, Ava has met every challenge head on and continues to amaze me with her strength everyday. I just love this girl!! We're almost there! xoxox

Winter Sucks!

Anyone who knows me well knows I am not a big fan of winter time. The cold weather is just not my cup of tea and after the first snowfall I'm ready for it to be over. To top it off, winter has always been the time of year Ava complained the most about her legs before surgery and apparently that is not going to change. There are all sorts of statistics out there that claim children with hip dysplasia or dislocation suffer from little or no pain. Sorry I don't buy it! First of all how can doctors even know what a baby or toddler are feeling?? Most dysplasia is caught before a child can talk, so of course he/she is not complaining because they have no idea it's pain they are feeling. Many babies with dysplasia are late crawlers or walkers because it is difficult for them, leading me to believe there is discomfort (or pain) making them not wanting to do it. Ava was always a fussy baby and once she could talk cried that her legs, knees and belly (we now know it was probably pelvic area) hurt. Some of her worst fits were on cold, snowy or damp days. She often woke up during the winter months and was crying before she left her bed.

My "hip" girl!

So here we are 7 months later in the mist of winter months. Ava is doing great and I see her improvement and healing daily. People that see her comment how much healthier and happier she looks. She's friendlier and more out going in many ways. (And she quickly learned she can use the fact she had two hip surgeries to her benefit.) She is still going to physical therapy to help her get her flexibility back which will improve her walking and help her fully run again. I see this amazing improvement since the cast removal in September but at times I can see it can be frustrating to her that she's not 100%. She adapts quite easily but I just want her to feel better. I can not wait for her to be able to do things automatically and not have to work so hard. When she gets tired her left foot swings out we have to remind her to concentrate to hold it straight or she will bare her weight with her shoulders making her "waddle" worse. When she runs her "waddle" or limp is very distinct, it's apparent somethings off. I often see people staring which makes me want to scream. Sometimes I feel this need to say "She had hip surgery."

So bringing me back to my complaint about winter... there have been a few mornings recently that Ava has woken up cranky and teary complaining her boo boos hurt (where her plates & pins are on her femur) or her knees hurts. When Ava says her knees hurt I want to throw up because that was always her number one complaint before surgery. Each time this has happened it has always been on a damp cold day. Last week we were picking Jack up from school, it was very cold out and as we started walking towards the school (this is huge for Ava to want to walk this distance) she says to me "Mommy it's to cold out, my legs ache so much." My heart just broke for her and I just wanted to cry. Is this what it's going to be like for her  cold weather?? Will it get better or will it be something she adapts to?? I don't think her doctor can give me that answer because everyone is different. Ask anyone that has had a broken bone or surgery they always complain of a pain or ache in cold weather. Like everything else Ava takes this in stride and keeps moving forward.

In the last few days David and I both noticed Ava is limping. When we ask her if something hurt she replies "No." She is not complaining of pain but will say her legs are tired. She refuses to do her stretching exercises at home (she's a stubborn one!) which is not helping. My assumption is the cold weather is making her stiff which in turn makes her less flexible. Anyone with a "hip" child knows what anxiety this can cause when you see a limp. All the worst possible things run through your head and you begin to worry even more (if that's possible.) So for me (and Ava) winter can not end soon enough! We go back to visit Dr. A on February 15, I can not wait for the appointment. We will do a follow up x ray (I know it will be perfect!) and hopefully we will schedule her final surgery to remove the plates and pins. In the mean time keep Ava in your thoughts and prayers, may her pain and discomfort subside and let her enjoy being 5 like every other child. I'm not sure I'll ever stop worrying (what parent doesn't) but I look forward to the day this is not on my mind 24/7. as always I'm so proud of my brave little butterfly! Hurry up Spring!!! XOXOX