Post Op X ray!

It has been 17 days since Ava's first hip surgery, some days it feels like yesterday, other days it feels like it's been months. I could not wait for our post op appointment! This was our moment of truth, the x ray to see if her hip is healing properly. After a 20 minute wait we were finally called in. The nurse came to get us to do the x ray, then we patiently waited for Dr. A. Once in the room, Dr. A put the x ray from 2 weeks before the surgery and the x ray from today on the screen. Ava's left hip was in place and everything was healing perfectly. Yeah!!! My eyes filled with tears of joy,this was the first time since her diagnosis that I felt true relief. My baby is half way healed. Seeing that x ray and having the comparison of her bad hip and now good hip says it all. There stood the reason we put Ava through this. There was the reason although I am exhausted physically, mentally and emotionally that I take each day at a time. I have read so many stories about things going wrong when hip dislocation is diagnosed at an older age that I found it hard to believe everything would go as planned. I am so thankful that so far in our journey everything is going great. I guess there is something to say for optimism and as far as doctors go we could not have picked a more encouraging and optimistic doctor. This has truely been a blessing.

Having a 4 year old in a Spica cast is very stressful. Ava has always had a sassy and at times demanding personailty. She's a girl who knows what she wants and now it's magnified, making moments that sometimes you just have to walk away. Everyone has been so generous with gifts and coming to visit but can be tremendously overwhelming to her. She has never been a child that wanted to be center of attention and now she has an abundance of it. There  are times when Ava has been less the gracious and out right embarrassing to us. None of it is acceptable behavior but she is a 4 year old stuck in a cast that has made her immobile and dependent on everyone around her. She gets tired and frustrated and we all have to remember she's four! This last 2 weeks has not been easy on any of us. We are all surviving on little sleep and doing the best we can to get through it. It breaks my heart knowing that in 2 1/2weeks we have to go through it again but knowing that after she  will be on the road to complete recovery makes it all worth it. By the end of August our Princess P will be healed.

I hope someone can learn or gain hope from our story. The statistics aren't great once diagnosed with hip dysplasia at any degree. The information that can be found is usually based off someone not having the expected outcome and looking for help. The biggest way to help others is raise awareness. Please pass my blog on, you never know who this may reach. If we can help one child or family get through DDH then this makes it all worth it. My family is so blessed to have such a strong support system and I want to give back to others that may not have the same. Keep praying for Ava's full recovery. I have no doubt that my strong, brave girl will beat the odds. xoxo

Two Weeks...That's it!

Getting hair washed!

It has been two weeks since Ava had her surgery, some days it feels like two months! Don't get me wrong, things are going way better then I could hope and everyone has adapted quickly but some days feel like they will never end. Our days are beginning way earlier then normal, usually around 6:30 am but sometimes as early as 5:30am. Ava is handling the cast great and really doesn't complain about it. The simple things are the hardest to adjust too such as an itch on her foot or pulling up her covers, these things she can't do for herself. I've been able to squeeze in a 30 minute work out each day but not without the constant "Are you done yet?" and she really enjoys when we go for a walk. We manage to wash her hair and clean her exposed body parts by laying her on the kitchen counter and hanging her head into the sink. At first she was resistant and scared of this but after a few times she is enjoying it. Luckily she is able to sit on the toilet just fine so we are not dealing with a smelly cast. The edges of the cast are lined with mole skin to protect the rubbing of the cast on her skin. Unfortunately Ava had a bad experience with the mole skin being applied at the hospital by a nurses aid that seemed to not have a lot of experience with the application. She hit Ava's incision and made her bleed and caused some pain. Now Ava screams bloody murder when this has to be changed. Luckily her cast is staying clean and we do not have to do it often.  Today I changed it all (with Ava screaming) and it went pretty smoothly since all her swelling is gone and it is easy to get the edges inside her cast. After Ava said "When I get my purple cast on can you put the mole skin on so the nurses don't hurt me?" I guess I did okay. Hopefully we will not have to change it again. We are settling into our routine and kept really busy through out the day. I don't think one of us is not exhausted by the end of the day, including Jack who has been a tremendous help in keeping his sister happy.

Spica Chair!!

A must have when your child is in a Spica cast (especially at this age) is a Spica chair. I was fortunate enough to find someone on a Facebook page that gave the plans for them free. With the help of Jack, my brother was able to build Ava her own Spica chair. This is an absolute life saver, it really has changed everything. Ava can now sit up straight to eat, play games, color, paint and to do other crafts. She is so much happier since the chair was delivered Saturday and even though she still needs to switch up the positions her body is in, most of the time she wants to be in the chair. Ava is able to go longer periods of time playing, enabling us to get things done around the house. Either David or I is with the kids 24/7. It's amazing how quickly your body can adapt to the lack of sleep and the constant going. Yesterday I actually got to nap (I literally passed out on the couch, so I guess I needed it) and even got to get a pedicure. I felt like new person after, we all have to be revived from time to time. Although we have had tons of offers for people to stay with Ava, I am not comfortable with people lifting and carrying Ava yet. It's difficult for me to leave her for even short periods of time but I know I need to take the break for my own mental health. On Friday is Ava's post op visit with Dr A. She will have an x ray done to make sure the hip is in place and healing properly. Hopefully after this appointment we will be able to breath a sigh of relief for a couple weeks, if all looks good we will be all set for the right hip surgery on July 18th. I can not wait for the reassurance that Ava is healing properly and on the road to healthy hips. I dread the next surgery, the hours waiting and the days in the hospital. At least this time we'll know what to expect and we will be at the half way point. I hope the next few weeks go quicker then the last few. I am so thankful to the people around us that are helping us get through this. There are so many kind and generous people out there. I am so proud of my Jack. He dotes on his sister and helps so much in her care and for the most part does so without complaint. He just wants Ava to be well and healthy again. Ava is an amazing little girl. She is handling her self so well and tolerates the annoyance of her cast like no other. I look forward to the day that our little butterfly is running around our house pain free and healthy!!

One week down! How many more?!?!

 Well we survived our first week in a Spica cast. It's not always easy and I've gone  through a million emotions, sometimes in the same minute. We have quickly adapted to carrying Ava in her cast and how to move her around to make her comfortable. She's not always agreeable but she wasn't always agreeable before the cast, so not much has changed. We have an infant again except this one talks and makes lots of demands. She has quickly earned the name "Miss Demandy Pants" from me. I can handle getting the things she would like but the whining and crying to get what she wants has to go. We've always reinforced manners and to ask for things properly with both our kids, having a cast on is no excuse for rudeness. I don't want to have a spoiled bratty four year old once the cast is off. For the most part she is happy during the day but at night the cranky girl sets in. I feel so bad for her when she cries her legs hurt and there's nothing to do for her. The first couple nights home she was waking up hourly and would only let me comfort her. I was exhausted but had no choice but to keep going. Finally, last night she slept almost 7 hours. I was not fond of the 6:20am wake up call but at least I actually slept a few hours straight.

Craft time!

I've always enjoyed doing crafts, baking, planting and playing games with both my kids but I've also been blessed with two kids that also enjoy playing independently. Both Jack and Ava like there alone time just like me. My days have become exhausting! I can barely leave Ava for a minute. Trying to keep a very active kid busy is a daunting task! There are no more minutes to myself, I can barely pee before she's beckoning me again. She changes the activity she would like to do sometimes within minutes and which usually entails a position change. It's very hard not to get aggravated with her but I'm trying to remember how frustrated she must be. The last few days have been perfect weather to get Ava out. We have been going for walks to get some fresh air and Ava really enjoys riding in her jogging stroller. Unfortunately it looks like we're headed for steamy temperature so we'll be spending all our time in the air condition to keep her comfortable. Luckily Ava is able to use the toilet to go potty opposed to a bed pan. My hope this will help with a less stinky cast at the end of these 5 weeks. Jack and I have this down to a science... Ava yells "I need to go potty!!" I pick her up and pull her diaper off while Jack opens the bathroom door, turns on the light and makes sure the toilet seat is down. Then I run Ava into the bathroom and hold her on the toilet. It's actually quite comical.

I guess you can say things are going better then expected. I'm sure we can expect rough days here and there but all we can do is take it one day at a time. Last night I made a calendar to countdown to Ava's next surgery and to when her cast will finally be off. All we can do now is help Ava pass the time as quickly as possible until she has healthy hips. I am so proud of Ava and how well she is handling being in the cast. When I get frustrated I need to take a deep breath and remember that this is more frustrating for her then me. Ava is one brave four year old!

Home

Blowing bubbles with Daddy.

Friday felt like a day that never would end. About 9am they finally took Ava off the oxygen and her blood transfusion was done. Her oxygen levels were up but now came the waiting game of the blood test to see if her hemoglobin levels were up as well. All Ava wanted to do was go home. She had had enough and so had I. We were both tired and getting cranky and ready to be at home. Both David and I did everything possible to keep her entertained. Even a nursing student decided to paint her toes and fingernails for her, which Ava was excited about. They drew blood at 1pm to test the hemoglobin, Ava was not happy. Finally after hours of pacing we got the news we were hoping for, Ava's hemoglobin's had rose to normal levels. Yeah!!! We were going home. It was 4:30 in the afternoon and Ava had become tired, cranky and whining over everything. I signed her release papers and we were on our own. We found this odd that no one walked us out. No one checked are car seat. No one helped us at all. Once we got to the car Ava freaked out that it was not her normal car seat. Really kid, your going home! Stop crying! After lots of maneuvering, we got Ava settled and we were on our way. Home sweet home! Ava's mood changed instantly! She was laughing, smiling and talking up a storm. She was so excited to see her big brother and to be in her usual surroundings. I even got her to eat a little dinner. Around 8:30pm we got both kids ready for bed. Ava could not wait to sleep in her own bed. It was so sweet to watch Jack dote on his sister, he even covered her up when she asked. It felt so good to be home and be able to relax some. At about midnight David and I were woke up by Ava screaming for me. She was complaining her legs hurt. After alittle coaxing and calming her down some, we convinced her to take some Advil and quickly got her back to sleep. Thankfully she slept until 6:30 the next morning and our first day home with the spica cast began.

Home Sweet Home!!

First walk!

David went back to work today so I was on my own for the day. Surprisingly the day started off well. Ava was for the most part agreeable. Everything we do is on a learning curve. When you have no other choice you make things work. Both Ava and I are adapting and figuring it out one step at a time. In true Ava style, she has to put up a fight about anything that is unknown. Once she realizing it doesn't hurt or she can accomplish something, she goes back to her happy self. She was eating, doing crafts, coloring, cutting and watching movies. Jack and I were even able to take her out for a walk in a jogging stroller. By late afternoon she had a low grade fever and was super cranky. She was over doing it. After some Advil and rest her behavior changed a little. We went out to blow bubbles but after that it was over. Ava became cranky, demanding and threw awful fits. Augh!!! Would this day ever end!  Deep breath...I'm sure we're going to have many days like this ahead of us. I do have to say I am proud of Ava, she is adapting very well for the most part but she definitely is getting frustrated in times where she can't express herself easily. We all have to take it one step at a time and take a lot of deep breathes. We have no other choice. Ava is healing and before we know it all this will be behind us. It's going to take a lot of patience. Every night I have to remember tomorrows a new day!

Day 3

 Ava was in good spirits Thursday morning. She was ready to go home but unfortunately her body was not. The resident Pediatrician came in the morning to go over Ava's blood work. Her hemoglobin's were low and she is slightly anemic, along with the low grade fever she's had and the low oxygen level they feel she should be monitored a bit longer. Apparently all these things are normal after a surgery like this but they want to take caution. They may even take her for a chest x ray to be sure. Over the morning I was able to persuade Ava to take bites here and there and she's loving that she can blow bubbles. In the mix of this I made her follow up visit with Orthopedist for Friday, June 29. He will take an x ray to make sure everything is healing properly and believe it or not this will also be her second pre op visit. We haven't even left the hospital and her second surgery is booked...Wednesday July 18!

Jack reading to Ava.

In the afternoon it was determined that Ava did not need an x ray and her levels were okay and were reading the same as in surgery. As she eats and gains strength they will return to normal. Yeah!! Ava's mood was better and by afternoon she was really perky. She has become an expert bubble blower and enjoyed her visit with her big brother Jack. We were able to take Ava down to the playroom twice today and the second time she even played with a kitchen set. The best news of all is Daddy held Ava on the potty and she went. Awesome!! No bedpans or diapers for us, Ava's a big girl and showing everyone nothing will hold her down. Finally at dinner time Ava ate dinner. She had a little more then a half of slice of pizza and 1/4 of Italian Ice. Finally my girl is coming back to me. So I thought....

Playing : )

Around 7pm Ava oxygen level was low again and her breathing a little fast. Auuughhh how frustrating! They decided to retest the hemoglobin and to do the chest x ray after all. They put the oxygen tube back on which really upset Ava and her mood changed instantly. The tech came in to draw blood and it broke my heart as my baby screamed "Be gentle!! Be gentle putting that needle in!!" This poor child has been poked and prodded so much in the last few days. The x ray tech came right to us so Ava didn't have to move. With her blankey over her face the x ray was done in no time. Now the waiting begins... We are back on the emotional roller coaster just as I thought we were in the clear. Thankfully the x ray was clear but over night Ava received a blood transfusion. Her levels were just to low and they think the anemia was causing her heart to beat to fast.

Daddy and Ava

Both Ava and I got some sleep last night and as I stare at her this morning she looks so peaceful. It was a very emotional and nerve wracking night. I'm so happy my baby is doing better and we're both looking forward to going home this afternoon. Ava is such a brave little one and has taught me strength  I never knew I had. I can't believe in 5 weeks we'll be back here to do this all again for the right hip. At least that time we'll be half way through our journey. Looking forward to my tiny dancer to be back to herself! Keep praying. xoxoxox

First 48 Hours

Exhausted! Pretty much the only word that can describe me right now. We officially survived the first 48 hours with Ava's Spica cast, not without some tears from both Ava and I but we did it. Ava is such an amazing and brave little girl. She has been vocal with her wants and needs and is very clear if she has had enough. She made it 10 hours the first night without pain medication, the pain tolerance this child has. Her main complaint the first night was she wanted me to hold her and she misses Jack. Needless to say I got little sleep, between her waking up and the nurses and doctors coming in to check on her. We were all a little groggy in the morning. Ava was happy when Jack called to talk to her before school and I love that she has the support of her big brother. The rest of the day was pretty smooth. She slept a lot and we finally got her to drink apple juice and go pee for the first time. The best part of my day was finally picking my Princess P up!! She was so glad I could finally hold her, it lasted about five minutes then she conked right back out.

Holding Ava for the 1st time.

I have to admit the cast scares me. I'm so scared I'll hurt her or drop her. It's awkward to move but I'm sure over time it will get easier. Later in the afternoon I finally got brave enough to pick Ava up myself. She asked to sit on my lap instead of laying down. It was a little bit of a task but we managed and I know having me closer made all the difference to her.

 Last night was a bit crazy and overwhelming to me and Ava. Her breathing was heavier and faster then normal and she had a low grade temperature. Lucky for us we got the most amazing night nurse that was on top of it. Not that the nurses haven't done their job but this one was super attentive and really set mine and Ava's minds at ease. First she gave Ava Tylenol for her fever and then put her on oxygen to help her levels. Finally Ava was resting comfortably but I was so worried for her. When the nurses aide came in to take all Ava's vitals she discovered her bed was soaked and so was her special blankey. After inspection, the nurse realized her IV cap and part of the tube was leaking.  This all had to be changed, Ava was not happy. All she kept saying was don't touch my IV, no more needles. There was nothing I could do for her but try to calm her the best I could. It's a horrible feeling seeing your child in such distress. After some coaxing we finally convinced her that it would not hurt her and be over quickly. After the IV fix, her linens were changed and Ava was once again resting peacefully. The nurse even washed and dried her blankey for her. She also found bubbles for Ava to blow to help expand her lungs. Ava was coming around and her oxygen level was coming up. Finally we were settled for the night and fell asleep. At 2am Ava woke me up with her screaming and saying "I want to go!" At first I thought she meant home but then quickly realized she meant potty. Ava is a camel, she can hold it like no one I know. I knew this would be the toughest part for her... having to go in a diaper. I calmed her the best I could and convinced her to relax and go. Well she must of been holding it for hours because she soaked the whole bed! Once again she had her linens changed and we both got a few hours sleep.

Blowing bubbles!!

So here we are at day 3. Ava is doing well this morning. She even said she is hungry. I managed to get a little orange juice, cheerios and applesauce in her. She also received her first dose of Tylenol with codeine. We're getting closer to going home.Yeah!! We're both ready and in need of a good nights sleep. Dr. A came to visit us this morning and talk about Ava's progress and next surgery. He said things look good and after reviewing the x ray from the surgery he is moving it up to 4 weeks!!! Yahoo! Fingers crossed the surgery will be the second week of July and the second cast will be on 4 to 6 weeks. This is fantastic news!! We maybe done with this by they end of summer! I try to take each day as a new day and keep in mind there is a light at the end of the tunnel. Ava is handling everything with such bravery and I could not be more proud. Please keep praying! If things keep going as positive as they have so far before we know it tiny dancer will be back on her feet. xoxox

Left Hip

Being silly....

When I went to bed last night there was a heaviness in my heart. My mind was going a mile a minute worrying about Ava's first surgery. As we drove to the hospital this morning there was a sadness inside me like I've never felt before. I did not want Ava to go through this but unfortunately we do not have a choice. Ava was in good spirits once we got to the hospital and was very cooperative as they did the normal checks. We met the anesthesiologist and filled out the required paperwork. Ava was very talkative and asking lots of questions. She asked Dr. A "what color pink will my cast be?" and "When I get my second cast can I have purple?" Okay she was jumping ahead a little but at least she know what she wants. I was able to hold it together while we waited and while I walked with her to the OR. As I laid her on the table I completely lost it. This always the worst part, your child crying and grabbing for you and you have to let go. I left the OR in sobs and it felt like forever until I could get myself together.

Pink cast!

Waiting is the worst! We watched so many other parents come into the waiting room and leave the waiting room while we were there. Honestly the first 4 hours went unexpectedly fast but the last 50 minutes was torture.  I could not stop pacing and the sound of my flip flops was driving David nuts. All I kept thinking is I have to do this again in 6 weeks!! Finally after what felt like forever the doctor came out and said Ava did great and all went as planned. So relieved! Now the real hard part begins...getting through the pain and healing. As Ava slowly woke up she was her usual sassy self. She literally would wake up, say one sentence and conk back out. Here are some of the things she said...The blanket was covering her cast, she looked down and said "My cast isn't pink!!" "My friends at school are going to sign it." "I don't want anything!!" "Take this off me." "I can't move my feet good."  "Mommy I want you to pick me up!" "OW Ow OW Ow OW!!" "I miss Jack!" For the most part all Ava has done since being moved to her room is sleep. We were so happy Jack decided he wanted to see Ava. He was having a lot of anxiety about everything and I think the visit did them both good. Hopefully tomorrow she will really start to come around.

Big Brother Jack helping her feel better!

This has been one of the hardest and most trying days of our life. I hate seeing Ava in pain and wish I could make it go away. I pray the next couple weeks pass quickly and my Princess P will be back to dancing in no time. Thank you to everyone for the prayers and well wishes. We have so much gratitude and it helped us through this tough day. Please continue to pray for Ava's quick recovery and for the  strength we need to get through this. xoxoxo

Ava

Tomorrow is Ava's surgery. I can't even begin to describe the roller coaster of emotions I'm going through. This past week we tried to make everything super special for Ava. It started off with her first dance recital. I sat in awe, with tears running down my face as predicted, as my sweet girl smiled and performed each move perfectly. Well, as perfect as a four year old can. We celebrated after with our family. It was such a nice day and Ava did fantastic. We are so proud of her. Mid week we had a girls day with a few of Ava's friends. We went to her favorite park, ate lunch at Hot Dog Johnny's (best hot dog place ever) and finished with ice cream at Herbies. I loved watching Ava laugh, run and play with her friends. On Sunday we took Ava to her most favorite place.....The Beach!! what a perfect day with her cousins and Jack splashing and dancing in the waves. There was moments through out the week that I was so emotional watching Ava with her friends and family. I know three months will pass quickly but right now it seems like eternity.We are so grateful for the support we have around us...from family, friends, co workers, clients and neighbors. The generosity and kindness our daughter (and we) have received is amazing. It has brought me to tears on more then one occasion. We are so blessed in many ways. As I gave Ava her bath tonight I got teary eyed knowing this will be her last one for several months. Before bed Ava asked a lot of questions and hopefully I put her mind at ease. We are in for a crazy ride but as a family we will get through it. Please pray for Ava and keep her near your heart tomorrow. I know my Princess P will do amazing! xoxoxo

The count down begins...

Today was a big day for us, the pre op visit with Dr. A for Ava's upcoming surgery....to me this made it all real after months of talking about it. I have to admit I was super anxious, this was it...the count down would begin. Last night I prepared Ava for her checkup. Her first question was "Do I get my cast tomorrow?" After reassuring her that this was just a checkup and to talk to Dr. A about the surgery she seemed fine. For the first time in months she climbed into bed with us, she was even slightly whimpering in her sleep. How could I kick her out? She was definitely nervous about today and needed to be close. We had a crazy morning doing errands. One of our stops was at Walmart, knowing the drill of the impending doctors appointment she convinced me to buy her, her 36th My Little Pony...I reminded her we usually get something after her appointment for being so good and brave. Her response "Of course I'm going to be good!" She hasn't disappointed us yet , so Cherry Pie was all hers. Next it was off to pick up daddy from work. Thankfully my friend Meg armed us with questions to ask. Quite frankly when I think about the surgery all I can do is cry, my mind was blank when I was trying to come up with a list.

Ava's appointment began with two more x rays and a quick exam to determine if one hip was worse then the other. Both hips are about the same so he decided the right hip would be operated on first. Dr. A began explaining how things would go...the needed to cut the femur and remove about a 1/2 inch of the bone, it will then be held together with a plate and pins so the bone will heal properly. By doing this it allows him to pull the ball down and  put it back in the socket with less pressure. Also the socket will be cleared of anything in the way and all ligaments, tendons and muscles will be stretched to allow the hip to be in the proper spot. After the Spica cast will be applied to keep everything in place while healing. The surgery will take approximately 4 hours and she will be in the hospital for 3 days. After 2 weeks Ava will have an x ray done to make sure all is healing well, if so 3-4 weeks later they will repeat the surgery on the left hip. I was very proud of myself today, I did not cry at all! I thought for sure I would be a mess but I did great. The biggest relief was finding out Ava would be casted in a sitting position. What??!! This is fantastic! It wipes out so many worries, we had been under the impression she would be in her cast straight legged. She will fit in her car seat, be able to sit in a stroller, be carried on our hip and sit up to play games or do crafts. This really changes how I view things. Don't get me wrong the next few months aren't going to be easy, I'm sure we'll have rough days but she will be way more portable then I originally thought. The next great news we learned was after the second surgery her cast may only be on for 6 weeks!! This is huge, he had originally told us a possible 2-3 months after. This makes a total of 3 months in a Spica cast opposed to 5 months....the light at the end of the tunnel is closer. Dr A even gave Ava a chance to ask questions...her only question "What color will my cast be?" Dr A's response "You look like a pink girl to me." Ding ding ding! We have a winner, pink it is! I think Dr A put Ava at such ease today that she was excited to tell Jack about the color of her cast and even asked at bedtime if tomorrow I could show her a picture of what it will look like.

Life can be challenging and overwhelming at times but I believe the easiest way to deal with it is to keep everything in perspective. The next few months will be rough but we are making a decision that will hopefully allow Ava to live her life without pain. It is a blip on a long road of life ahead of her. I have many close friends going through difficult times right now and unfortunately their ends may not be as happy as ours. My heart goes out to each and every one of them and pray for their strength and healing. Dr A has an extremely positive attitude about Ava's procedures and being that she is so healthy there is no reason for things not to go as planned. A year from now she will be healed and back to her normal activities. It's great to have such great resources these days with the Internet and facebook but sometimes you need to step back. I have been researching what is ahead of us and driving myself crazy. If you hear the worst then you begin to believe that is what will happen. I decided today I am going to approach this with the most positive attitude possible. I have faith that Ava can be that story of things going as planned and the story people read to have hope and faith. I'm sure the months ahead will be challenging and I'm sure many tears will be shed but my daughter is a fighter and will overcome this like no other with her sassy attitude. Tomorrow we will watch Ava dance in her first dance recital. I'm sure tears will be streaming down my face as I watch. From here on out it is one day at a time and all in perspective.



Ava's growing My Little Pony collection...I'm sure she'll have a 100 by the time this is over!