Wednesday, October 11, 2017

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



Friday, March 31, 2017

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

Sunday, November 27, 2016

And Life is good...

Hello friends! It's been awhile since I've updated. Life has been so busy! Ava has had a few colds since the last time I posted. Many things have happened....

She turned 10! It was a milestone to us. How can ten years have gone by!


We are reminded daily of what a miracle she is!! She has such a wonderful, loving, giving and lively spirit! She embraces every minute of life.



At school she was asked to write thank you notes to people in her life. Ava shocked me completely when she told me she wanted to write the notes to her surgeons and her nurse practitioner. Her words gave me goosebumps. To know her little spirit choose these people. I was just so happy and proud.

Last month we went for her surgery check up. (We still go once a year.) She gave her NP the note after he was through looking her over. She is doing well. He was happy to see that her weight (69) was climbing and so was her height. (Almost 5 feet tall!) He then got Dr. Shilyansky, her second surgeon to come in to visit. He was thrilled with her progress. She gave them their notes and they were so thankful she thought of them. Her surgeon told her that the photo we gave him many years ago still sits in his office. He said each time he looks at it he is humbled by Ava and all her complications. (That brought me to tears...) God knows exactly what we need when we need it. Her doctors are proof of that. We are so grateful for ALL they did and continue to do!


Here is a photo of her thank you cards. On the inside she basically wrote "thank you for saving my life."



This Iowa City, doctor trip Brian came along so I got in on a photo which is rare. YES don't be shocked I've lost a little weight and no I'm not sick. I'm great! Just go healthy.


Halloween was fun. You know me I LOVE to dress up. Ava and I went to a few different things around town. Here is a few of our adventures and costumes.

We HAD to do a scary one. Those gorilla eyes are yours truly... Ava Lou! And me well I'm about to be eaten. But all was well. :)


Downtown trick or treating... I was Alice in Wonderland and She was Katniss Everdeen of the Hunger games.


Trunk or treat... we both went as "good" clowns. We said we wanted to change the perception of clowns. (Isn't this world just crazy?) We had a great time!


Thanksgiving went great. I have to tell you again I was so proud of this little lady. She came to me the night before Thanksgiving and asked if she could write a little something for the family that she could say on that day. I was so happy and wanted to help her. It was all her! I had to help her with a few words but here is what her speech said, 

"I am thankful for my family. My life started kinda hard. My mom and dad saved me from the hospital. My grandma and Aunt Amanda were there to look after me too. My sisters Lexis and Emeline had to go to school and act like nothing was happening to me. My cousins made me strong. There were times I had to stay home from school. In the end I want to thank Jesus for letting me stay with my family and making me healthy now." ~Ava

When it was time for her to do the speech she read it as loud as she possible could. It brought tears to many eyes of those in our family, myself included. We have been so blessed! Oh what a day.

All is good here with the Helmick's. She's doing so good in school and is trying to stay healthy. (That's a very hard job to do!) We love that you check in with us. Sorry I didn't update sooner. 

~Terri L. Helmick


Friday, June 3, 2016

Pain in her Side.

Good day everyone! It's been a while since I updated. She did have a coughing cold a few weeks ago but a little help from her inhalers and a five day course of Prednisone it stopped fairly quickly. I was very thankful for that.

Ava has been having pain on her left side for about 6 days now. As most of you follow you know that this is the side that her diaphragmatic hernia occurred on when she was born. The good news is that she's been eating great and her stools have been normal and frequent. (We keep a chart in the bathroom that she writes it down each time. Or at least tries to remember to write it down.) So yesterday we took her to see her AWESOME/THE BEST/GREATEST nurse practitioner. (With the exception of my sister Amanda since she is now an NP too!) He was happy to see her.

First we were off to ultrasound. They wanted to see if any of her scars. (Ava has a lot of them.) They looked at her initial horizontal scar from birth. Then they looked at her scar from her g tube and her drainage scar on the left side. We also saw her Gortex patch (fake diaphragm) on the left side. We learned or at least I did today at her large intestines runs right under her patch along with some fat on top of that. Her spleen is transverse meaning it right there under it going a different direction than normal. I did know that she had the ladd's procedure during on of her many surgeries. That is when they place the small intestines on the right side and the large intestines or bowel on the left side. (Normally you have your small intestines then your large bowel is underneath.) She also had her appendix taken out.... so I didn't have to worry about that. Can you imagine her having a pain and it being the appendix and it being in a totally different spot? I can and it would drive me nuts because even though they can chart where things are placed after surgery they can often move a bit.

So doctor Simon Kao did the ultrasound. He remembered us and especially Ava from all the years he has run tests on her. He was fascinated by her insides and brought another doctor along to explain what they were seeing. I'll have to say it was quite interesting. They don't see too many people like Ava everyday. She's a challenge to say the least. He couldn't believe how well she was doing. He even asked about Brian. He recalled how we were always there together advocating for her. It was great to see him! Here is Dr. Kao.... intelligent OH YES and he had an excellent memory. Awesome doctor to have on Ava's side!


Looking over all her scars he didn't see any hernia. (A hole in the muscle allowing the intestines to pass through.) So great news!

We then stopped into see Josh Peterson ARNP. He is always a breath of fresh air. He cares so much about Ava. He examined her and agreed with Dr. Kao that it could be stool in her bowels not coming out fast enough causing soreness. He also thinks it could possibly be scar tissue pulling since she is growing quite a bit. She is now 66 pounds and 4 feet 10 inches tall. So we are going to try a daily dose of Miralax and see if that helps make her side feel any better. If that doesn't work we will have to investigate more. Here is a photo of Josh Peterson. He has been a God send to us through these many years.



A few pictures of her yesterday. Here was her in ultrasound.


When we got into the room she was very cold. So baby blankets it was!



We stopped and ate lunch at her favorite place... Steak & Shake. Then went to shop at one store. Huh image what she wanted... this hat. An Ava selfie!


When we left he shook Ava's hand and gave her a little hug. Wow all we have all been through with her! She is such an inspiration to so many. In a few months she will be ten. This is crazy to me! She's been doing so well. Looking back ten years ago I was so worried and thought that possibly my unborn child would pass away at birth. Little did I know of God's plan for her life.

Lexis (Ava's sister) graduated on Sunday from High School. We were so proud of her. Time seems to be flying by! A few pictures of the graduation.



And of course I had to have a photo booth!




I think of of the neatest, bravest and cool thing is she doesn't mind that her scars show. She is happy with who she is and I just love this!


We thank you for your thoughts,support and prayers for Ava. We truly appreciate all who read her blog. 

~Terri