Happy 14th Birthday Ava!

 "Ava, It's picture day for my birthday girl... we do it every year! I can't believe all you've been through. This year was extremely hard and very challenging. I've seen you walk through some very dark days but you come out with a smile! Thanks for continuing to fight to be with us. I always get so emotional the days leading up to your birthday. I'm reminded of God's love... you are a miracle and it's been quite the ride. I love you with all my heart. You have made me a stronger person. You keep me on my toes. Love you forever my MIRACLE girl! Happy 14th Birthday!!!"

Can you guess which Disney Character she is into now?

We surprised Ava last night with a beach party. She was shocked to say the least. It was just our family. We really had a great time. She's been through so much the least I could do was give her a party. I'm sad her friends couldn't come... someday I pray.

And so it begins... the hat that will never leave her head. No, it was not my gift!

Yes that is a Stitch Onsie!

What are you wishing for Ava?

Photo prop time!! The photographer in me LOVES this part!

We are so blessed!

Ava started online school today. This is going to be an interesting year. I think her phone will have to be in my possession when she is doing school. Does she look thrilled?

Thanks for stopping by. We thank you for all the birthday wishes on facebook and on our CDH page. I did break down last night and had to come down and hug Ava. I cried and told her how much I loved her... how much she meant to me and that I was so happy she was okay now. I usually keep these feelings to myself. (It's kinda a ritual for my mind to just go back to her birth delivery and all the memories.) This year I felt overwhelmed and needed her to know that I'm so proud of the young lady she has become. We spent so many time in the hospital. I am just amazed at God's goodness to us. I want to let other CDH parents know that they are not alone in feeling sad even during moments of celebration. I've learned the most in life on the worst days of my life. I keep saying the Bible verse... "I can do all things through Christ!" Amen! We love you all, Have a good night.

-Terri

Surgery Follow-up

 Hello friends! Ava has been doing great. She said she feels better than she did before surgery. That is huge to us. We are so thankful that she feels this way. Today was her follow-up appointment with her surgeon Dr. Shilyanky. He said it was not uncommon for her to have a bowel obstruction after surgery. (If we had a chance for a redo I wouldn't have let her eat solid foods right away. I think that was the cause... but only God knows for sure.) He was happy to see she was feeling and looking.

I better warn you we colored her hair a medium brown. She has been begging me for weeks now. She likes this color much better. I felt a bit sad as I lost my twin?!

She weighs 113 pounds and is 5'7 and a half. So far she's stayed this height so we'll see if she grows anymore.

Covid-19 will you ever leave? These masks are not fun to wear at all. I feel for the people that have to wear them all day long. 

Her x ray looked good too. I am so relieved that things are going well. We have really been blessed.

Here is what her incision looked like on a few days ago laying down. There are a few spots where the stitches are trying to break through her skin. He said if she wanted to pull them and cut them off she could. Also he wanted her to really clean that area. It will make it look better.

Here is her incision today while she was standing up. 54 days after surgery. She's one tough cookie!

Here is her x ray of today. It's great to see when organs are in their proper places!! Diaphragm looks great! So happy to see this... the down side is we too can see her scoliosis as well. She has an orthopedic appointment September 23rd to see Dr. Weinstein. We are praying her curve is holding steady. She had an appointment with him in July that we had to cancel due to her hospital stay.

I asked her doctor what will happen if she needs another operation when she is an adult. He said that he sees/can do surgery up to age 21 and then he would refer her to a Thoraracic surgeon. He also said he could possibly look in or help the surgeon if more needed to be done. Her and him have been in this so long together! I asked this question because several people have come to our page as adult survivors asking where are they to go for help or if they need a surgery. I honestly didn't know. Thoracic surgeon is the answer. We pray that this will be her last repair but nothing is for certain. It's the most asked question she gets... is this the final surgery? We just do not know but are so blessed to be in this place now. Her journey has been a roller coaster ride.

So yea... all good news! 

Ava will begin online classes soon. Our county is really being careful as the percentage rate is at 15.4% today. They postponed school this last week due to the virus. They have the option to go two times a week or do all online. It was an easy decision for us. She must still be careful and we will do our best to keep her well. Our hearts go out to so many that have contracted the virus. I know I'm not in control so if she gets it... well we will go from there. We are just so happy she is eating well, going to the bathroom and feeling no pain. 

Thanks for your support, love and prayers. We know that with God ALL things are possible. I can honestly look back and say I can't even begin to tell you how 14 years ago at this time we didn't know if she would survive and now for her to be a teenager and healthy?! God is so good. She turns 14 on Monday. How can this be? I'm so thankful that God exceeds my expectations ALL the time with this young lady. He still has so much more for her to do with her precious life! I can't wait to see what that turn out to be!

-Terri

Zoo. Zoo? Zoo!

 Hello friends! I'm sorry I haven't updated. We've been too busy doing normal things!! (Ha ha!) We LOVE normal! We don't even mind boring. Ava is feeling better. I can't believe how quickly she is healing. Praise God things are moving in the right direction and she is healthy. She has a follow up appointment with Dr. S on August 27th. She looks AMAZING. Her eyes tell so much.

Last night we went to our river front so Ava could practice on her skate boarding skills. She got a skate board a few days ago and is doing so good. I got a tad bit nervous when I saw her get on for the first time BUT you know what? She is a normal young lady and God has given her the ability to do ,many neat things! (She's amazing on a hover board!) And she takes full advantage of it all!

The weather was PERFECT for My skater girl!

Our beautiful River front in Burlington, Iowa.

Today we went to the Zoo. They had a ton of rules in place and there were only selling a few tickets. We had a wonderful day enjoying the Sunshine and God's magnificent animals! I'm so thankful and blessed to say All is Well! God is good in the good times and He is good in the bad times as well!

So here is what we saw...

Yes even dinosaurs!

Turtles or Rocks?

Zebra.

This guy was parading around in front of us as soon as Ava started talking doggie talk! As if it was a dog. Silly girl. It worked.

This giraffe looks little here but in real life it was big!

She's gotten a lot of pictures with this over the years. I wonder if she is done growing?

You can't really see them in the picture very well but there are two very beautiful leopards laying right next to the window and Ava.

What a blessed day we had today at the Zoo. Sorry we look a little scary in this picture.

I'm so very happy to have this little lady here with me happy and healthy.

We sang Disney songs on the way home. She knows ALL the words to ALL the songs to "The Princess and the Frog." I'm not sure why she loves that movie but she does!

Thanks for all your thoughts and prayers. We love the support you give us.

My Bible verse for today. 

Psalm 27:4 "One thing have I asked of the Lord. that will I seek after; that I may dwell in the house of the Lord all the days of my life, to gaze upon the beauty of the Lord and to inquire in his temple." 

-Terri