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