Scoliosis

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!

~Terri

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

Ava sees her Surgeon Dr. Shilyansky.

Hello Ava followers and friends! Ava had her yearly check up with her surgeon Dr. Shilyansky on Thursday. It was in a brand new building but still part of the hospital. We were a little confused where to go. A few people had to guide us along the way. Once we found the office they told us she had to go get an x ray so again we were wondering around trying to find it. Ava and I always seem to get turned around! BUT at last we found it. She's a pro at x rays. I can't even tell you how many she's had over her life, hundreds I'm sure!

We adore Dr. Shilyansky! Nine years ago when we met him it was due to Ava re herniating. (Her diaphragm failing.) She had flew in a helicopter and was in dire need of help. She was hanging onto life. It was one of the worst days of my life. She was 25 months old. So of course, every time we see him our hearts are just so thankful to him and his team. God did big miracles for her! He used to be a bit larger. He's gotten healthy and has taken up running like me. I had to get a picture of her and him together.

Ava is always a clown. She bounces off the walls waiting for the doctors to come in the room!

A doctor's appointment is always fun with me! Or at least that's what I think! Her dad was with Emeline at the Dentistry clinic there in Iowa City. It was a full day for sure!

Dr. Shilyansky came in and said, "She's not a baby anymore!" No she certainly isn't. They took her weight and height. She weighs 68 and she is just a touch under 5"2. (My height!) He was happy she was feeling great and looking so good and strong. He asked her how old she was... he couldn't believe she was 11! She told him that that she was in choir and that she did a few plays this Summer.

He then turned to her x ray. When he pulled it up I was a little taken back. He said that he doesn't know for sure what is in her left diaphragm area. There is some space which "could" indicate a possible hole or what looks to be bowel in her lung area. He did not say this... I can see this. He said that he is "concerned" about her left diaphragm and wants us to return in three months for another x ray. He will then access how it is and a CT scan would tell us a little more on what was actually happening. My heart fell. This was the first time since Ava has been able to understand and is old enough to see that her body is fragile... so to speak. Brian and I always fear the possibility of more issues or complications. It's just part of our thinking. She was born with a severe birth defect and no left side diaphragm. It's never been easy. Praise God He has helped her and all of us overcome so much so far. Dr. Shilyansky told us that she was older and stronger and if she needed surgery it would be more doable this time around. "Ha ha.. is that even possible?" Here is her x rays from last year and Thursdays. They look similar but it doesn't look good. We don't want another hole. A hole allows bowel to become obstructed and possibly her breathing to be compromised. It's a scary thing.

My wheels are turning fast as we drove home. Brian and I didn't discuss much as I knew it was a conversation to be had in secret, away from Ava. I don't want her to worry or be scared. I can't imagine her angle in all of this. She doesn't remember any of her surgeries or hospital stays that occurred when she was born and then up unto age 4. Brian and I remember them too clearly. 

Here is what my brain is thinking. We need to watch her closely. If she complains of stomach pain, has issues with passing stool or has trouble breathing this will alert us to the possibility that her diaphragm is in trouble. I'm having her chart her bowel movements. (Yep serious mom in overdrive here keeping her baby safe!) If she gets through the 3 months without issue we will get that x ray and if she needs the CT scan done we will get answers. "If" she needs surgery we want her to have the Latissimus dorsi muscle repair surgery. This is when they take would take the muscle from her side or back and use it as her diaphragm. This would be her own issue allowing it to grow and stretch with Ava. The Gortex patch does NOT grow with the person. It is made out of mesh. It usually produces scar tissue around it but in my mind is not stable and reliable. I don't want her to keep having repair surgeries. So my mission is to research and find out where we should go. We don't want to wait for an emergency to get this fixed if there truly is a hole again.

Here is a poster I made to explain the LATT procedure as described above.

I've found some x rays so you can see the progression of her x rays. Some I've used as teaching devises on my page so that is why there is information on them. If I have any CDH parents on here that have any advise please email me at mycdhlife@gmail.com. Any thoughts or words we would appreciate.

This is Ava's x ray at birth. Her stomach is right next to her heart and her organs are in her left chest area. I have it all marked.

Here is when she was 6. You can see her left diaphragm is really low.

Here she is at age 7. And again her diaphragm is still pretty low on the left side.

Now I will show you the last two years again. It becomes more scary. Things have moved up. I will go back through my x rays and find more and fill in these years but this is all of them I had on this computer right now.

So please if you would say prayers for Ava and our family. I will not let fear scare me or worry me. I will do just as I have before and do my research and prepare ourselves for what may lie ahead. I'm praying that nothing more happens. I can't be alarmed until God brings me to that place.

I'll leave you with a quote from a great pastor.
Your mind needs a break. It wasn’t meant to “go” all the time. The Scripture says in 1 Peter 5:7, “Cast all your care on Him.” You have to turn your cares over to God. You weren’t designed to carry that load. It’s going to frustrate you. Here’s the key: when you rest, God goes to work. ~Joel Osteen

God Bless each and every one of you!

~Terri Helmick

LONG overdue update...Lung and GI Check up

Hello Ava friends and followers! It's been a LONG time since I posted and update. We had a wonderful Summer. I'm so happy to finally feel cooler weather! Ava's health has been excellent. I hate even typing that as it might bring the germ bugs our way but HEY I'm so thrilled she is growing and becoming her own little lady.

In August she turned 11. I talked her into doing a Fairy Photo shoot. She is always up for any of my weird ideas. I think she made a perfect fairy!

Her birthday cake.

Most of you know I started a facebook page to help CDH parents in 2011. It has brought so many amazing families together to share their stories of HOPE! I'm so proud of the page. Yes my life is busy. These days I am watching my sister, Mary's 4 year old twins. They are in Preschool so I get a few mornings to myself. My nephew has Autism. So yet another challenge I've come to get to know and to accept. It has brought a lot of same emotions that CDH bought in the early days. The unknowns and the what if's... you could go on and on. I trust that through this God has a plan and that the little man whom I adore will come through this loved and totally accepted just as Ava is!

Here are the twins on their first day of 2nd year Preschool. They have come a long way. These two are like my 4th and 5th children. I love them just as much as my own. I'm so happy they are in our lives. Their mom works so hard as a Postal carrier and she needs my help during the days. It's a whirl wins sometimes but ALL worth it!

So talking about my CDH facebook page Ava and I went "LIVE" on it a few months ago. You may want to check that out. She is so confident and so carefree! I've always loved that about her! If you go to our page you will find it pinned as one of the first posts you will see. We talk about her congenital diaphragmatic hernia journey and also her complications. We even answer questions. We had a great time. I LOVE putting our face to our page! https://www.facebook.com/raisingcdhkids/

This Summer we took a small get away to a Royals game in Kansas City. The entire family went. Lexis is now 19. Emeline is 17 and Ava is 11. We had so much fun. We all sported our Royals outfits. What a treat!

Ava with the trophies!! Her dad is a TRUE Royals fan... so we all join in!

Brian and I celebrated our 22nd wedding anniversary. Ava was our photographer. She did an amazing job. She may take over my work in the future! We are so lucky to be with each other after all these years. Marriage is hard. It's very stressful with a sick child. We managed it like it was butter.... we slide through. We decided to wear our wedding attire. I have lost 55 pounds and fit perfectly into my wedding dress. What a neat thing to be able to do, huh?

This was our old photo with our new photo. Oh the wonders of Photoshop! Such fun. We haven't changed a bit. ;)

Also this Summer Ava was in a play. I was shocked that she was not afraid to be in front of a large audience. So we know that acting will remain in her future. We are so proud of her. 

Ava had a check up appointment with her Pulmonary nurse practitioner and also one with her GI doctor. Ava still deals with Asthma (during colds) and reflux everyday. She is still on Prevacid and her daily Symbicort. We also did a "live" on our page when she did her lung function test. We know that many parents want to know what lies in the future for their CDHer and we are glad to give them a glimpse. And also we have older survivors that like to see how things are done currently in the medical field. She was happy to have people follow her along. The University of Iowa Children's hospital did a major remodel. If you haven't heard about their half time wave to the patients... well please read. It is SO awesome! I remember when Ava spent so much time in the hospital we'd try to go get a glimpse of the game on game days. However you couldn't see it at all. NOW the children's hospital is up super high and you can watch in over the game. The game is stopped at halftime I believe so that the fans and team can all turn and wave to the children in the hospital!! http://www.ncaa.com/news/football/article/2017-09-21/iowa-football-fans-wave-childrens-hospital-hawkeyes-newest

Here we are waiting for her appointments to start. This was September 25th. She of course got all good news at these appointments. The doctors were thrilled with her progress. She is growing so much. She is 5 foot 1 inch tall and weighs 68 pounds. She grows on her own curve. She is almost as tall as me... YIKES! It won't be long.

Ava also sings in our town's choir. She has been practicing and will be preforming in December. We are so happy that she is able to do normal things just like every other 5th grader her age! She's also a crossing guard at school. She does that job on Mondays. I still can't believe this is her last year of elementary school. Where does the time go, seriously?

Carepages... which I started journal-ling Ava's story at birth has now said they will no longer offer the blogger's service. I'm so thankful I started Ava's blog many years ago. They did give me her entire carepage I can download so I was thrilled. A lot of writing and memories right there!

As always thanks so much for your continued love and prayers. We feel the love and support. So thrilled to be filling you in on all the wonderful and amazing things our family has accomplished.

~Terri Helmick

Check up DAY!

Hello to all our friends and family! Thanks for checking in. Ava had two appointments on Wednesday. We got up very early and made it there by 8 am. She saw her Pulmonary nurse practitioner, Cheryl. We really like her. She takes great care of Ava. She started the day with getting weighed and measured. They were all shocked by how tall she has gotten. Next we went to do her lung function test. She gets better and better each time. She is coming down with a cold but it didn't seem to affect her numbers. She has normal test results of a child her age. I find that Amazing... of course they can't separate your lungs and test them individually, so this means that Ava's good lung functions that of two lungs.

Doctor visit selfie!

So Cheryl was happy to see her over all jump in height and weight. Her height is 5'0.79 and her weight is 75 pounds. She finally got on the BMI chart (body mass index) We know she is growing and is healthy at that! We are continuing her same medicines. She is on a twice daily Symbicort inhaler. If she gets a cold we then do her regimen of albuterol inhalers and Atrovent. And if that doesn't kick it we bring the Prednisone on board. That too is a hefty amount. (20 mg's twice a day) Thankfully over this Winter we only needed steroid once. (A seven day course.) So that's great! 

She still loves to write on the chalk boards. Her writings always consist of her love for me, which blesses my heart. There is no doubt she loves her Mom! And of course her dad and sisters!

We then saw Dr. Ebach her GI doctor. She too was pleased with how Ava looked. We agreed on backing down on her Prevacid from 30 mg's 2 x's a day to just once a day. Yes you read that right... she was on 60 mg's a day. Her reflux is severe. Prevacid can cause your bones to be fragile so I'm hoping Ava's body does good with this change. If she stops taking the meds then she gets terribly sick and throws up and feels nauseous.... not a good thing at all. She still isn't quite old enough to take her medicines on her own. She does pretty good though. After all she is just 10... almost 11.

After her appointments we decided to check out the lobby of the new children's hospital. They have been building it for a LONG time it seems. It opened a few months ago. It is so nice. (I'm hoping and praying we never have to experience an over night stay.) So please keep the prayers coming.

I thought she MUST get a photo near the giraffe as "April" is all over the internet... any day she will have the baby calf. We check in from time to time. They said today is the day... we will see huh?

And the new theater... how big and AMAZING is this?

These were a few cool things on the wall. Ava loved them all.

This lobby is HUGE!

We decided to go shopping afterwards. What girl doesn't like to shop? I love my little Aya-baya!

I've been so busy I haven't had time for much of my passion... PHOTOGRAPHY. So I decided to sit Ava down the other night and get some great shots of her. She adores this bear. I often wonder how I ever got so lucky? Every day this special little girl gives me a huge hug and says this to me... "Mom do you know how much I love you?" And I say, "A LOT Ava." and she shakes her head yes. There is never a day that she doesn't do this? I get emotional at times. It's like she knows I need encouragement too. I give it all day long but getting it... well us moms we NEED it too. God knew I needed this child. Please don't get me wrong I LOVE my other two daughters equally as I do Ava. They are now teenagers and they get caught up in their own lives which is to be expected. And perhaps one day Ava will forget to tell me... and that will be okay. I just savor each and every day. Life is a GIFT! 

I always look to the future but occasionally when we make doctor's visits or I see an old photo, or when I'm reminded I can't help but think of this beautiful healthy little lady and the struggles she endured. I still have my facebook page that helps cdhers and their families. It serves as a constant reminder that we just never know if tomorrow will come. I'm so grateful for ALL that God has given me! We've been on quite the journey!

Thank you too all who come here, read about Ava and pray for her. It means so much to us all. God is good! I'll exit with a wonderful Bible verse about Our loving, God's GRACE... 

1 Peter 5:10 And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you.

~Terri