Tuesday, February 20, 2018

Scoliosis Back Check up.

Hello friends! Ava's been doing well. She had a cold a few weeks ago. I started her on her asthma regimen of Symibcort, Albulterol, Atrovent and steroids and it cleared up in less than a week. So happy about that. There is so many illnesses going around right now. I seriously want to stay home and be locked up. Many of you know I watch my sister's four year old twins during the day while she works. They have had the stomach flu and the respiratory flu for the last two and a half weeks. It's been rough. Ava is learning to wash her hands and sanitize whenever possible. I'm a little OCD about germs... she may have gotten that from me!

I can't believe it's been six weeks since she got her brace. Yesterday we went back for an X ray check of her brace. The doctor says her brace is doing exactly what it's supposed to be doing. Ava's curve without the brace is 26 and when she is in the brace it lowers her curve to 12. We want Ava's curve to, not necessarily get better (although wouldn't that be a miracle) we just don't want it getting worse.

They want no metal on your body so we came prepared. She wore a bra that had no metal and a plain shirt with stretch leggings. (We caught the lady at the desk off guard....she said you will have to change out of your jeans... Ava says THESE are NOT Jeans they are leggings! Oh the Joys of what comes out of this child's mouth get me every time!)

This is her newest x ray. The first picture she is in the brace (yesterday) and the second photo is her without the brace. (6 weeks ago.) Seeing that change makes me smile! Ava says "I guess it is doing something!"

I've been so proud of her. She has really been wearing it for the 14 hours a day. So the deal we made is if she sleeps in the brace all night then she doesn't have to wear it to school. If for some reason she is not able to sleep in it at night then she has to wear it to school. Sadly even with all those sleeping hours she still has to wear the brace another 3 to 4 hours after school. She has no problem at all with the brace. It's just become part of her. This morning she had left it out in the living room and it was so bizarre to see. Thinking back wondering and asking God "WHY did I have to break my back and wear a stupid tight restricting brace?" Well now I know. I have so much empathy and love for her and this brace. So sometimes when we question why God allows bad things to happen I refer to things like this. I have so much more compassion for her.

The doctor wants us to keep doing everything the same. He wants to see her back in 6 months. Yikes I thought it would be sooner but if she has no issues I guess that is a good thing. Plus we all know how fast 6 months goes by!

Ava sent me this snapchat picture yesterday. I just HAD to share it. She's growing up WAY too fast. She's a good little girl with a sweet, kind and loving heart. She is so outgoing and not afraid of life. It's all so simple to her.

Thanks for stopping by and for those of you that pray for us THANK YOU so MUCH! We certainly can feel your love, support and prayers. God is good!


Friday, February 2, 2018

All things work together for the Good.

Hello friends and family. Ava is doing GREAT wearing her back brace for 14 hours a day. She usually puts it on at 9pm and tries to wear it all night. Most of the time she wears it until 7 am. Then she wears it a few hours after she gets home from school. She does on occasion take it off at night because she cant sleep and then she wear it to school to get in her time. She never complains. She's so strong and brave.

Ava had a follow up appointment with Dr. Shilyansky (her surgeon) yesterday. We've been concerned about the area around the place her patch was placed in 2008. (Crazy enough her first patch placed at birth was somehow digested by her small bowel when she was 25 months old. And that spun a ton of life and death ordeals for her for several years.)

She's now 5'3.66" (98th percentile)
Weight 91lb 7.9 oz (61 percentile)
BMI- 15.87 (20th percentile)

Blood pressure was 110/65.... her pulse was 108... respiration 18

We are loving Children's new hospital. Everything is so happy and positive. Most of the decorations have to do with corn and farm animals. (I guess that's about all we have here in Iowa!) This amazing lady has been doing Ava's x rays since she was 2. We love her!

She was nearly as tall as the lady!!

 The two spots we are concerned about is the "bubbles" on the left side right under her heart. The first is her stomach and the one near the side is her large colon. (Ava had to have her colon moved in 2008. So where we normally have small intestines on top and large on the bottom... not with Ava. She has her small intestines on her right side and her large on the left side.) We also know that her spleen is on her left side near the left wall, laying almost perpendicular.

I have to always refer to this Bible verse. It's helped us through so many hard times. God is ALWAYS here with us... good times and bad ones alike. I love this little lady!!

I talked to Ava on the drive home and explained how important it is that she lets us know if she isn't feeling well. I think hearing the words from her surgeon helped her understand how important it is to be aware if something doesn't feel right. Signs of reherniation are respiratory stress, abdominal pain/distention or vomiting. 

"And we know that all things work together for good to them that love God, to them who are the called according to his purpose." Romans 8:28
So yesterday we were finally told (Something I already suspected for about a year.) that the spots on the x ray near her left diaphragm are her stomach and colon. Dr. S is not sure where the patch is. He thinks she may have a hole and her intestines are just there blocking it. Sadly the surgery is so massive that we are going to wait until she is showing sign before we proceed. I'm truly giving this to God. Pray for her continued health. No one is assured tomorrow. It makes life so much more precious. Be in the moment family and friends. I LOVE you all and are so thankful you are all in my life. 


Wednesday, January 10, 2018

Scoliosis Brace

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.

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!

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!


Monday, December 4, 2017


Hello family and friends. Today was a very long day for Ava and I. On Ava's last x ray the radiologist mentioned the word scoliosis in his notes. That jumped out at me and I called her Orthopedic doctor to set up an appointment. He had discharged her in 2013 as he said her back looked fine. Ava has grown so much over the last year. Something like 6 inches... crazy huh?

Ava and I before her appointment. We are now the same height 5'3!

So I'm having a hard time grasping today in my brain so I'm not going to go into detail. Yes I know scoliosis can happen in CDHer's due to the fact that their patch pulls and "tethers" down their spine but STOP not on Ava. I'm not ready for this. So for the facts of the day. She was in the fancy x ray machine once again. She also got x rays of her hands. They say they can tell about aging and growing through your hands.

Her curve is on the left... usually people with scoliosis have the curve on the right. It does make sense though as Ava's Gortex patch is on the left side.

Here is the findings of the x ray results.
Findings / Impression: There is levoscoliosis of the thoracic spine
with Cobb angle of 26 degrees between T6 and T11. Negative sagittal

balance with offset of 9.1 cm.

Dr. Weinstein diagnosed Ava with scoliosis today. He said she needed a back brace and he wanted her to wear it 14-16 hours a day. He also ordered an MRI which we were able to do today. She was very afraid at the start, tears streaming down but then she did fine. It was me that was a nervous wreck. I was able to stay in the room with her. Ava has penetrating eyes. I had flash backs of when she was small and she couldn't talk. Her eyes would show such sorrow. It was so hard watching the fear yet again. She was in the machine for almost an hour. I wasn't able to bring my phone so I didn't get any pictures of the MRI.

She had to be measured. She's excited about the brace. I'm not at all. Fifteen years ago I broke my back in a go cart accident. I had to wear a full body back brace for 4 months. It was terrible. It pains me to know she will have to go through this. However the goal is to keep her curve exactly where it is. We caught it before it was really bad. If we can maintain her spine now she will not need surgery in the future. All of this news is hitting me like a ton of bricks. I'm reminding myself to remain calm and let God take care of her. It's just so very hard to do all the time. I wanted to bawl my eyes out but I had to be strong for Ava. I'm just amazed at how brave and strong she is! She truly is one in a million! Now we wait for about 6 weeks and then we will be back to get her brace and have Dr. Weinstein make it perfect so that it will help Ava.

Ava getting fitted for her brace. 

Silly girl!

She got to pick out a pattern for the brace. She choose butterflies!

This is a sample of what the brace will look like. It will be opposite than this since her curve is on the left and not the right.

Please keep us in your prayers. This is another BIG change in our lives. We have yet to get the final read on her CT scan from her surgeon's appointment. I'm assuming they are okay however looking at her diaphragm today on this xray it concerns me. I'm just not sure if her patch is steady and good. SO much to think about... so much on my mind. We need your prayers!


Thursday, November 30, 2017

Test Day

Hello everyone. Today was a very long day. Ava had a CT scan and an ultrasound to see how her diaphragm was holding up. She had some symptoms last year and then at the last appointment her x ray looked different to the ones in the past as I explained in the last post. Our goal is to be proactive with her situation... if that is possible. Congenital Diaphragmatic Hernia has been anything but true to itself. It keeps us on our toes to say the least! Ava did so well as always. She downed the contrast for her CT scan like it was water. I've had this stuff and it's not that good. She did have lemon flavoring added to make it taste a little better. She's so amazing!

Here she is in the CT scan. No fear at all. It took a big whopping 1:15 seconds.

She then went to the ultrasound room where a very nice lady and Dr. Kao. He remembered us both so well. He couldn't believe how tall she had gotten. (Everyone says this!!) We wanted to see how her diaphragm moved while she was breathing. I was shocked to find out that her left (patched) left side does not move at all when she takes a breath. The right side performs like a normal diaphragm. The doctor said this is typical for cdh kids. Of the 12 years I've known about CDH I'd never knew this. It goes to show you that we just keep learning about this birth defect at each and every visit.

So next we went and talked to her surgeon Dr, Shilyansky about the tests. He couldn't confirm anything as he is not a radiologist. He wants Dr. Kao to look through the scans and get his opinion. It is very hard to tell what everything is by just going through a CT scan fast... especially when you are looking at things that are in odd places like how Ava's body is. We know that her small bowel is on the right and her large bowel is on the left. Her large bowel goes all the way up to where the diaphragm patch is. Her spleen is laying oddly there as well.

We were able to see Dr. Fisher today. He is a plastic surgeon. I was so happy he was able to get us in on such short notice. We had so many questions about the muscle repair surgery. He was great at answering all of them. So basically if Ava had a large hole again in her diaphragm Dr. Shilyansky would go in and clean up her scar tissue. Then Dr. Fisher would take a side portion of her left muscle in her back and lay it down to form a new diaphragm. It is a very difficult and long surgery. It will be huge! Now if the hole is small they want to put in another patch. I'm hoping we won't need either. Brian and I just want to know our options when it comes to fixing her this time. Last time when she reherniated. (Her diaphragm failed) she was so sick that they just had to go in and save her as fast as possible and that meant using another Gortex patch. Ava has grown so much over the last few years that it's almost unbelievable. I worry the patch will break. And learning today that it also doesn't move with her disturbs me as well.

So we now wait for the official results. It should take a day or so. It's so tough being a parent and having to make such tough choices about your child. Choices that will affect the rest of her life. I do feel that God is with us every step of the way. I try not to ponder to much on the what if's. I think if it's bad we will deal with it on that day. One day at a time! Please keep Ava and our entire family in your prayers.

~Terri Helmick