Check up Day

 Hello friends. Ava has been busy with school. She is struggling to keep up with online learning. It's so easy for her to get distracted so I've been sitting in on most of her classes with her. This is a whole new world for me. I'm learning things... or maybe I just forgot them! Regardless things are getting done! She misses her friends but we are all about her staying healthy. I believe that three staff members at her school have gotten the Corona Virus. It's sad and we pray that the school stays safe and healthy.

I can't get over how quickly she is recovering from surgery. She feels a lot better now than she has in the past. She goes on walks outside everyday. We are still pretty quarantined to the house just to stay safe.

See how excited she looks.

Mother and Daughter... I was so glad I felt well to go to these appointments. Please keep me in your prayers as I have to go through a lot of testing this month to figure out what is wrong with me. I've been having a lot of abdominal pain and pressure. I'm so thankful that Brian works and I can just stay home and rest. I have faith that it will get solved and I'll be running in no time. Oh how I miss running!

A quick picture without masks before heading up to the doctor's office.

Today we saw Dr. Ebach her Gastrologist (GI). She was thrilled that Ava looked so good. She said that she had looked over her notes about her surgery in July and hospital stay. It was a lot. We are so happy she has healed so well! We told her that Ava was able to go down on her acid reflux medicine since her hospital stay in July. She was really liked that.

My dad said to Ava... "You have prayed so much that you wore your knees out in your jeans." So funny. I love how he comes up with things like that to say! Oh how we have prayed, right friends?!

Next she had a lung function test. She never likes to do them. She is good at the blowing the air out but has it's hard to keep exhaling until all of the air is out of your lungs. She got to test her diaphragm patch today. The technician was a blast. She has been at Children's for a long time and remembers when Ava was tiny. I brought up a picture of Ava doing a test in 2012. She suggested we reenact the picture. We gave it a shot! How adorable is this?

Time sure goes by so quickly! Ava's health is wonderful. We have been blessed that her body is healing and that it is growing. She is now 5'7.6 and 116 pounds. 

For those that are curious here what she does for her lung function test.

Thanks everyone for your comments. We do read them all! They are so encouraging to us! Your love, support and prayers are ALWAYS appreciated. God bless!

-Terri and Ava

 

Scoliosis Check-up

 Hello Ava friends! She says, "Hello"! She's been doing great. She does school online now. Mondays and Wednesday from 7:45 am to 12:35 pm. Then Tuesday and Thursday from 12:35 pm to 3:15. I kinda had to get on her today as one of her teachers called to tell me that Ava had several missing assignments. She then told me Ava had not got online today for her class. I had to disagree with her as Ava was sitting at the table with me as I was figuring out doctor's appointments... I could hear the teacher on her Chromebook that Ava had in front of her. She was even taking notes so I'm not sure what is going on but I told Ava that I want her school online time to be spent in the living room where I could double check that she is listening and participating.

As I mentioned above I was making appointments. I've not been feeling well. I have gone to several specialists and nothing is showing up in blood work and on scans. It's frustrating... I've had two kidney stones and once last year when my tubes that pass between my kidneys and bladder were narrowing on the right side. The doctor placed a stent in both kidneys. That "unwell feeling" returned on the 3rd and has not let up. It has stopped everything in my life. I can barely walk. So... that is why her Dad had to take her to her Orthopedic appointment today in Iowa City with Dr. Weinstein. This is the very first doctor's appointment I've ever missed with Ava. However Brian is very capable and I think they had a little father/daughter time today.

So here is what they both reported. Ava's spine is still holding at 24. This is great news! We had to reschedule her appointment due to her surgery in July, so we were wondering if her curve had changed. Thank you Lord that it is still stable 24. They did the x ray of her hand and found that she was done growing by her bone age. 

Photo credits... via snap chat by her Dad. I get what I get, folks!

Her x ray... See the curve? It's also interesting to see her new diaphragm placement as well.

Little education about bone age... A child's bones, such as those in the fingers and wrist, contain "growing zones" at both ends called growth plates. These plates consist of special cells responsible for the bones' growth in length. Growth plates are easy to spot on an X-ray because they're softer and contain less mineral, making them appear darker on an X-ray image than the rest of the bone. 

So she stands tall now at 5'7 and a half. Meaning that most likely she is done growing so therefore her bones will not change anymore. This is AMAZINGLY GREAT news for Ava. Dr. Weinstein says he doesn't see any surgery for her back in the future at all. Brian did so good that he got a few pictures for me to add to the blog. She doesn't need to return for a whole year and then again when she is a Senior in High school. One less thing we have to think about. Amen!

Thanks for checking in on Ava. As always, we Welcome your love, support and prayers. (Please pray for me too. I need to figure out what is causing so much pain in my abdomen and my back.) I hope everyone had a good day. I'm on pain meds so I hope this post makes sense. I try. Got to keep it updated!

-Terri

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

Beautiful Lady

Hello friends. Ava has been doing really well. We were watching her incision as it was blister-like and a little red. I called the nurse yesterday morning and she said to try warm compresses on it and if it didn't get any better we would have to come in so they could lance it. (Yikes!) So after 5 times (20 minutes each time) it finally popped on it's own. We were so relieved. It is looking much better. 

Here is what it looked like yesterday.

This morning it looked so much better. We put Antibiotic cream and a band aid on it all night. Again I'm so happy we didn't have to travel to the Children's Hospital. God worked it out right here at home.

You might notice a change on our blog. I redid the banner at the top. She's been through so much and wow so much more has happened. So that meant a new large picture for the center. She looked beautiful today. It was perfect weather for pictures. She choose the one for the blog. I love them all! I think I took around 45 pictures and they all turned out so good. She's the strongest person I know!! I'm so proud of her in so many ways.  She has fought hard and long and I'm so happy she is feeling better.

Last week at this time we were in the hospital. She's been out for five days now. I thank God for His continued healing. We are so blessed to be home! I drive her nuts sometimes because I check on her a lot. I can't help it. The nurse in me can't stop. Before bed I hook her up to the pulse ox machine to see her heart rate and her oxygen saturation. I then take it off. I just want to be sure she's okay.

Something you take for granted is being able to sleep in your own bed. I've missed my bed! My heart goes out to those still in the hospital fighting. If I could give you any advise I'd say, "Live a day at a time.... sometimes you have to live minute to minute but you can do it! Better days are ahead!" Thanks again for all the prayers.

-Terri