Hello Ava followers! Ava's been doing so well. Monday Brian and I took her to Iowa City to get her back brace. As I told you last post she was diagnosed with a 26% curve. She was prescribed a brace. She got to pick out the design on it. It's purple with butterflies!
We went to the Prosthetics people to pick it up. This nice man named Evan helped to get it fitted for Ava. He had to trim a little of the brace under her arm area. He also had to heat up the area around her hip as it was pushing in and causing pain. After that he asked if she just wear it for 15 minutes and sit walk, stand and lay down in the brace to see if there were any other areas that were concerning to us. Nope it went fine. I asked her how it feels and she says it's "okay" and "hard to breath in it". Yes she's right!
This is the very first picture of her wearing the brace. I can't believe how tall she is getting.
We then went down for her back scan to make sure the brace fit exactly as the doctor wanted it to. This is a picture of Ava standing for the scan. She didn't complain once.
The doctor said with the brace on Ava's curve is 18% as opposed to 26% without the brace. She reminded us again the brace will not likely correct the curve it only helps to make the curve remain the same. (That is our goal.) However she MUST wear the brace for 14 hours a day. It will be a challenge. They do surgery if the curve is 45% or over so brace support is a must.
This first week we will let her get adjusted to it. She's been doing great about just putting it on and leaving it on. Sleeping with it is what doctors prefer but they also know that for some people it is impossible. So regardless of when it is worn it has to be 14 hours. Those hours don't have to be all at once but has to add up to 14 hours in a 24 hour period. The first night she tried to go to sleep in it and was not able to. The second night she wore it for about 2 hours that night and had to take it off as again she couldn't sleep. Last night she wore it to bed for a bit longer but still was not able to wear it the entire night. The doctor warned her it is going to take some getting used to for sure! Her muscles will get sore and her body might hurt.
Yesterday she asked if I could go to school and help her explain it to her teachers and her class about scoliosis and her brace. We stood up in front of them and showed them what it looked like and why she had to wear it. We opened it up for questions and I was amazed at all the questions. They were all eager to figure it all out. I was even asked how I felt about her wearing the brace. (It's been very hard for me as I'll explain at the end) She even had to tell all about congenital diaphragmatic hernia the birth defect she was born with. Sadly scoliosis can be part of the effects of CDH. Her classmates surprised me at how accepting and concerned they were about Ava. I told them that although Ava has issues with asthma and reflux, and now scoliosis that she was still a very normal kid. I walked away yesterday thinking.... those kids were a lot more accepting than most adults would be. I'm so proud of Ava and how she handles everything that comes her way. She never complains. I'm reminded yet again of what a MIRACLE she truly is! God has blessed us!
I know what Ava is going through... about 15 year ago I broke my upper back in a go cart accident. I didn't need surgery but I did have to wear a full back brace for 4 months. It was VERY hard to say the least. Lexis was 4 at the time and Emeline was 2. Such a difficult time to have to wear a brace and take care of children. I was not able to wear my brace at night but did all day long. From experience it is HOT, uncomfortable and VERY tight. You can't take a deep breath and sneezing or coughing hurts terribly bad. It was during this time I got anxiety attacks. (Something I never experienced before.) I didn't tell Ava any of this and am supportive and happy about "this next chapter in her life". So sometimes we wonder why things happen to us and we can't figure it out at the time. I think breaking my back and wearing the brace has made me a lot more empathetic towards Ava. Mine was for a very short time. She will wear her until she stops growing. Most likely through her high school years. The doctor said depending on how fast she grows she will get many braces. When we got home on Monday night she asked if we could get a picture of her and I in our braces. We did! (Putting that brace on brought up so many memories... hard memories but I know that it all worked out and it will for her as well.)
So here we are in our braces. Thank goodness I don't have to have to wear mine anymore. I do have a very soft spot for her and this situation. What a trouper she is!
AND as you can see she is now taller than me. :( How crazy is that?!
She decided to try and wear it to school today. I called her amazing teacher Mrs. Madegan and ask if she could help her if she needed to take it off for 20 or so minutes. I'm curious how she will do today. So far the longest time she has worn it continuously is 3 hours. This will be hard but I'm confident she will do great. She is old enough to know her body. I just asked that she be very careful as the brace was about $4000.00. Yep! She has taken on so much in her life. I know she can handle this too. At times this seems harder for me than for her. I need to give things to God. He is the healer and the provider. In HIM we trust!
Once again keep Ava in your thoughts and prayers. We will go back to the doctor in 6 weeks to check the placement of the brace and to talk with the doctor. Life is what we make of it. We have a good life!
-Terri
We went to the Prosthetics people to pick it up. This nice man named Evan helped to get it fitted for Ava. He had to trim a little of the brace under her arm area. He also had to heat up the area around her hip as it was pushing in and causing pain. After that he asked if she just wear it for 15 minutes and sit walk, stand and lay down in the brace to see if there were any other areas that were concerning to us. Nope it went fine. I asked her how it feels and she says it's "okay" and "hard to breath in it". Yes she's right!
This is the very first picture of her wearing the brace. I can't believe how tall she is getting.
The "not so sure" look here in her eyes. What a sweetheart!
Her curve is to the left that is why the sling part is on the left side and the right side is taller. We LOVE the purple with the butterflies!
This first week we will let her get adjusted to it. She's been doing great about just putting it on and leaving it on. Sleeping with it is what doctors prefer but they also know that for some people it is impossible. So regardless of when it is worn it has to be 14 hours. Those hours don't have to be all at once but has to add up to 14 hours in a 24 hour period. The first night she tried to go to sleep in it and was not able to. The second night she wore it for about 2 hours that night and had to take it off as again she couldn't sleep. Last night she wore it to bed for a bit longer but still was not able to wear it the entire night. The doctor warned her it is going to take some getting used to for sure! Her muscles will get sore and her body might hurt.
Yesterday she asked if I could go to school and help her explain it to her teachers and her class about scoliosis and her brace. We stood up in front of them and showed them what it looked like and why she had to wear it. We opened it up for questions and I was amazed at all the questions. They were all eager to figure it all out. I was even asked how I felt about her wearing the brace. (It's been very hard for me as I'll explain at the end) She even had to tell all about congenital diaphragmatic hernia the birth defect she was born with. Sadly scoliosis can be part of the effects of CDH. Her classmates surprised me at how accepting and concerned they were about Ava. I told them that although Ava has issues with asthma and reflux, and now scoliosis that she was still a very normal kid. I walked away yesterday thinking.... those kids were a lot more accepting than most adults would be. I'm so proud of Ava and how she handles everything that comes her way. She never complains. I'm reminded yet again of what a MIRACLE she truly is! God has blessed us!
I know what Ava is going through... about 15 year ago I broke my upper back in a go cart accident. I didn't need surgery but I did have to wear a full back brace for 4 months. It was VERY hard to say the least. Lexis was 4 at the time and Emeline was 2. Such a difficult time to have to wear a brace and take care of children. I was not able to wear my brace at night but did all day long. From experience it is HOT, uncomfortable and VERY tight. You can't take a deep breath and sneezing or coughing hurts terribly bad. It was during this time I got anxiety attacks. (Something I never experienced before.) I didn't tell Ava any of this and am supportive and happy about "this next chapter in her life". So sometimes we wonder why things happen to us and we can't figure it out at the time. I think breaking my back and wearing the brace has made me a lot more empathetic towards Ava. Mine was for a very short time. She will wear her until she stops growing. Most likely through her high school years. The doctor said depending on how fast she grows she will get many braces. When we got home on Monday night she asked if we could get a picture of her and I in our braces. We did! (Putting that brace on brought up so many memories... hard memories but I know that it all worked out and it will for her as well.)
So here we are in our braces. Thank goodness I don't have to have to wear mine anymore. I do have a very soft spot for her and this situation. What a trouper she is!
AND as you can see she is now taller than me. :( How crazy is that?!
She decided to try and wear it to school today. I called her amazing teacher Mrs. Madegan and ask if she could help her if she needed to take it off for 20 or so minutes. I'm curious how she will do today. So far the longest time she has worn it continuously is 3 hours. This will be hard but I'm confident she will do great. She is old enough to know her body. I just asked that she be very careful as the brace was about $4000.00. Yep! She has taken on so much in her life. I know she can handle this too. At times this seems harder for me than for her. I need to give things to God. He is the healer and the provider. In HIM we trust!
Once again keep Ava in your thoughts and prayers. We will go back to the doctor in 6 weeks to check the placement of the brace and to talk with the doctor. Life is what we make of it. We have a good life!
-Terri
