Physical Therapy

The change in Ava in the last 12 days is absolutely amazing. I never anticipated how hard it would be after her cast removal. Don't get me wrong, I knew she wouldn't get up and walk and I knew she would be stiff but I never expected the length of time it would last or how much strength she would need to rebuild. Not only does she have to recondition but she is also relearning what was normal to her. For three years Ava walked one way but now has to completely walk another. I can't even imagine how this must feel for her, now I completely understand why they prefer to perform this surgery at two years old opposed to a four year old. A two year doesn't anticipate or fully understand what is going on. The fear is not fully there yet and they are so curious they just move. My poor Ava anticipates pain and is scared when trying new exercises. She is fully aware of what is happening and bucks the system the whole way. She knows when she tries to stand or moves her legs it's going to hurt, not just a little but a lot.

Today was our fourth physical therapy session and what a difference! Last week when Ava met Miss Jill she barely wanted to do a thing and cried off and on. This week she's a changed girl. After our little discussion about cooperating or being put back in the hospital, Ava opted for trying harder (although she does test her limits.) At Monday's session she really fought baring any weight on her legs but today (with a little fight) she did it. (Yeah Ava!!) Miss Jill found her weak spot...swings!! In one of the PT rooms there is a giant swing and after cooperating Ava got to take a ride, the look of joy on Ava's face made the previous crying so worth it. My heart breaks every time Ava cries out "It hurts!" or "I'm scared!" but it soars when I see the look of pride she wears when she does something she thinks she can't do. Slowly but surely she is getting there. The strength Ava has with in her has truly shown no boundaries.

Crab walk.

Leg raises.

Sitting.

Pushing herself on big swing.

Everything takes time and I have to remind myself Ava has been through two major surgeries. Our days aren't always easy and there are moments when I feel like there is no end. Having to push Ava can be hard especially since she is usually talking back or resisting every step of the way. It's difficult for a four year old to understand that she needs to work through the pain to eventually be pain free. It's a whole new learning experience and all we can do is give her the tools to help her recover. As always, Ava is doing things in her time. (Gosh this girl is stubborn!) I'm so proud of my brave butterfly! Each day she is getting stronger and learning more of what her legs can do. All we can do is have lots of patience and help guide her as she relearns. After all, Rome wasn't built in a day!

It's been a week...

Ava has been cast free for a week now. Oh what a long week it has been! I knew this part of the journey would not be easy but I never expected it to be this difficult. Ava is scared! Scared to be moved, scared of being touched and wants no part of standing. She has been fighting us tooth and nail on her recovery. At least four nights this week Ava woke up screaming out in pain almost every hour! The lack of sleep has not helped and on top of it I got sick with allergy and sinus issues. My patience has been thin and I really just want to see my baby healed. Her cries and screams break my heart! I hate to see her in so much pain. Yes we give her pain medication  and we do whatever we can to make her comfortable but she does not make it easy for us. We're all tired. It's hard to get make a four year old understand that yes it hurts but the more you move through the pain the better you will feel. Oh the road ahead seems so long!

Ava is not sleeping well, cries in pain at physical therapy, complains her knees hurt and will not bear any weight on her legs. She moves around and can now bend her knees but she is using her arms and core to compensate instead of working the muscles in her legs and hips. Finally on Friday I called Dr. A with my concerns. He relieved my fears some by telling me knee pain is common due to the way she was casted and it could take weeks before the muscle pain is gone. He expressed concern about the lack of sleep and the fear of bearing weight on her legs. Bottom line Ava needs to get moving to progress to walking again. If by Monday Ava is not sleeping better and trying harder to move she will have to return to the hospital for pain management and physical therapy several times a day. Well guess what... all Ava had to hear is "hospital" and "IV" and her little attitude took a 360! Neither one of us wants to go back there so hopefully we finally got through to her how important it is to try harder. It's tough love time but as a parent it has to be one of the most difficult things. Nobody wants to see their baby in pain.

Working those legs!

Loving bath time!

Not so sure!!

 The last two nights Ava has slept better (oh so thankful!) and today she seemed to try a little more. We got her to do some exercises and when David helped her stand she managed to balance for a brief moment on her own. (Yeah!) When she sits in her chair her knees are sitting better and she seems to be moving her legs and feet around more. On a positive note bath time has come to be a favorite for all. Ava is so happy swimming around in the tub and almost all her dry skin has washed off. What a crazy ride this has been and unfortunately it is far from over. I pray tomorrow is a better day and Monday we will not have to return to the hospital. Ava is such a brave girl and I know how challenging relearning to walk must be for her. Hopefully things will only get better from here on out. My girl is on the mend and I can't wait to see those first steps!!

Life after the cast...

It has been four days since Ava had her cast removed. As thrilled as we are, it has not been as easy as I hoped it would be. Okay I didn't expect miracles and I know that it could be weeks before she walks again but it is definitely harder then I thought. We had made it through the worst of it, right??  I think I may have been wrong about that. Yes the surgeries were hard, dealing with the cast was hard but we adjusted and made our way. Nothing is harder then watching your child in pain. It's heart breaking. We are back on the roller coaster ride, just a different one. During the day Ava does great. She is slowly moving around, bending her knees, pointing and flexing her toes and rolling over. She can pull herself across the room on her bottom using her arms and is doing more and more for herself. She still has to be carried everywhere but often tells us it hurts when lifted. Being put in and taken her out of her car seat is the worst, there is just no good angle to lift her. Ava's legs still lie in the position they were casted because the muscles are so stiff. Her right leg looks the worst due to the knee being slightly rolled in. She is having a difficult time moving it or holding it straight. Nighttime has become a complete nightmare! Ava falls asleep easily but wakes up often during the night screaming of pain. She has not slept well since the cast was removed and last night was the worst! She was up almost every hour! (I think Jack was the only one to get sleep in at our house last night.) Ava screams in pain and says stuff like "It hurts so much!" "This is worse then the cast!" "Make it stop!" A knife right to the heart every time. My poor girl, I would do anything to take the pain away. Please! Please! Please! Let her pain subside soon.

Yesterday David and I took Ava to her first physical therapy session. We met Miss Jill, who Ava seemed to like. She answered any questions that was asked and cooperated for the most part. I think Miss Jill caught on quickly that Ava does not do anything unless it is on her terms. (Oh I hope this lady has patience of a saint because nothing will get accomplished otherwise.) Miss Jill began by asking about Ava's surgeries, casts and her current abilities. Next she measured the movement in Ava's legs. This session was more of evaluation to help miss Jill design the proper PT for Ava. She did a couple of exercises to see where was Ava was at and gave a few suggestions for home.  Watching Ava pull herself up holding onto a large cushion with out help made me realize the hard road ahead of her. She has to relearn everything! She has to relearn to use the proper muscles and not to compensate with other muscles the way she has over the last few months. Watching your child struggle with something that came so easily just a short few months ago is heart wrenching but on the other hand the look of pride in Ava's face when she accomplishes the task herself makes my heart soar.

I know like everything else we have gone through after a few days things get better. We adjust and take each day as it comes. On a brighter note Ava is so happy to be able to take a bath again. Lucky for her we have a jacuzzi size tub and she can practically swim in it. She would stay in for hours if we let her and she is so completely happy when splashing in the water. The look of contentment on her face during bath time reminds me everything will be okay. Ava has a rocky road ahead of her but I know like everything else she will rise to the challenge. She will regain strength and regain proper use of all her hip and leg muscles. I look forward to Ava's first steps all over again and being able to pick up my little girl without the screams of pain. And most of all I can't wait to hear the words "Mommy I don't hurt anymore." We are getting there and I'm sure Ava will be healed in no time!

Goodbye Cast!!!

95 days!!! That's how long my sweet girl had to be in her casts. Wow! We did it! There were definitely days that I though it would never end. It has been quite a journey, although Ava still has some healing to do the worst is over. Ava was so excited the days leading up to today. She would count the days left on her countdown calendar & scream in excitement that Friday was cast off day. Last night she even wanted to take pictures on her last night in a cast.This morning was a completely different, she woke up crying and really anxious about today. At least a hundred times she repeated "I'm not getting an IV, right?" "Dr. A promised no IV." She did not know what to expect and more scared then I though she would be. We reassured her over and over it would be fine but nothing was helping.

Jack by her side.

After arriving at the doctors office the anxiety continued. She was still asking the IV question (even Jack was getting annoyed) and was worried about the pain. While we waited in the exam room she started crying again...Oh Ava it's going to be alright. She wasn't buying it. She cried through the x ray and then the tech came in to remove the cast. Oh no! This was not going to be good! She decided her cast should stay on. (Sorry Ava, that's not an option.) The tech began prepping her and getting ready to saw off the cast as Ava screamed the most gut wrenching scream I have ever heard, the WHOLE time. It was hard to keep it together, I had tears in my eyes through it all and both David and I were trying to reassure her it would be okay. Nothing was working, Jack had to leave the room (but came back when Ava asked for him.) It felt like an hour but in no time the cast was removed and there were Ava's beautiful legs! WOW!!! She looks so big! Where did those long legs come from?? My girl grew so much! There is no more cast!! Best day ever!!!

Look at those legs!

Ava was still very anxious and was not calming down even when Dr A came in for the exam. He is happy with how her incisions are healing and happy there were no sores on Ava's legs. He showed us the x ray and Ava's hips are perfect!!! He said to let Ava take things at her own pace and to start physical therapy 2-3 times per week for 3-6 weeks depending how quickly Ava bounces back. If there were any problems give him a call immediately, come back for a check up in 3 weeks and we were free to go. Yeah! Ava was not ready, she cried and kept telling us she was scared it will hurt when I move her. Oh Ava! I finally coaxed her to put on her underwear and pants and carefully put her in the stroller, we were on our way. Ava was crying off and on when we put her in the car. I'm not sure how much pain there really was, most of the crying was from the anticipation of it.

True to our word, the first place we took Ava was the beach. It was a short visit but we saw the beach and ocean and breathed in the salt air! Ava was free!!!!! We had a quick lunch and some ice cream (well at least we did, Ava wanted no part) and Jack ran down to the ocean and back. Ava had some cotton candy (her favorite) and we were on our way. She was still crying off and on and when we got home she declared "I'm never leaving the house again!" (She's a funny one.) We got Ava settled on her favorite mattress and within a half an hour I had a new kid. Ava was wiggling around, starting to bend her knees and moving her legs together. Go Ava!! I give her a few days and I'm sure she'll be all over the place but one thing I know for sure it will be on her terms. My kid is amazing!!

Princess P!

I feel very blessed today. Ava made it through two major hip surgeries, two Spica cast and one Petrie cast in her true Ava style... with lots of sass! She is a strong brave girl and I could not be more proud of her. Tears fill my eyes as I watch her mover herself around and explore what she is capable of doing. I have no doubt Ava will be up and about in no time, there is no stopping her. I pray Ava's pain will subside quickly and her hips stay in place. It has been quite a road but as a family we made it. I love my girl to pieces!! My butterfly is free at last!! Ava will be dancing in no time! xoxoox

Pilates anyone??

I can not believe in 4 days Ava will have her final cast removed. It has been quite a ride and I get emotional just thinking about it. Ava has coped so well through out this whole journey, she has amazing strength. I think back to the day of her first surgery and remember how scared I was when I saw her Spica cast for the first time. But we did it! We took it one day at a time although it was not always easy. I can not thank our support system enough. Without our family and friends we would have never made it. I love you all!! You helped my girl do amazing things and helped me get through days when all I wanted to do is crawl in a hole. When Ava had her cast change four weeks ago I could not even imagine the end. Ava was in so much pain it broke my heart into a thousand pieces. Believe it or not it was almost worse then either surgery, we had a full week of feeling helpless. It's amazing how resilient children are and the change in just four weeks!! Ava is ready! She is like a little acrobat swinging her legs around and trying to stand on her own. She looks like she's doing Pilate's the way she moves and right now seems to be pain free. There is no stopping her! Ava's nervous for the cast removal and is scared of the unknown. I'm sure there will be some pain but her legs will be free!!Yeah!!!! I can not wait to see my girls legs! I look forward to Friday and I pray the rest of Ava's recovery goes as well as the recovery in her casts. Look for pictures of my Princess P cast free!!! We're there... I see the finish line!!