Ava’s Tea Party!

Ava has been great. I did have to change her g tube on Thursday night…it came halfway out. It had been in three and a half months so it was time to renew anyways! HOWEVER it was MY first g tube change. I was a little nervous but got through it just fine! She cried. I tried to console her and do it as quickly as possible. It is a tight fit for sure! So glad it is done!

Ava had a tea party at the park today. She is so funny. I love to watch her and of course photograph her ever move. Here are some of the highlights of today.

Say, “Cheers”!

Ava giving her bear a little face drink…:)

I HAD to do a little art with a few of these!

On August 31 Ava will be three. It is amazing the story of her life….already. I intend to write a book. I did start and have a lot more to write. She is such an inspiration to me and to so many. I want to thank everyone that leaves  messages. YOU all are my blessings. I can’t wait for Ava to someday read through all these lovely messages and know how many people were praying and supporting her. We are so happy that we will get to celebrate yet one more birthday with Ava. My grandfather that is 80 asked me the other if I ever doubted whether Ava would survive. I have to admit I really thought she might die many, many times. However God had His own agenda. Praise Him!

~Terri

The Wiggles LIVE…Go bananas!

Hello to our Internet world friends! I’ve worked hard on putting this video together of Ava’s “WIGGLES” Live Concert. I am warning you it is VERY long. She enjoyed herself as you can see as the video goes on. We will never forget this awesome experience.

 

A Note to the Wiggles: You rocked! Our daughter has loved you for awhile now and you have made her happy over the months she was ill. I can’t begin to thank you for your love of children and making their lives better. I too felt like a child as I sat there and sang your adorable songs. Thanks a MILLION for giving us an amazing night we will always remember! ~Love Brian, Terri and Miracle Ava

 

 

Make an on-line slide show at www.OneTrueMedia.com

Ava is just truckin’ along doing all the things she loves to do. HEr vocabulary is slowly growing. She is now saying “No!” (gotta love that one) “Baby” “Bob” (She still calls me this.) Oh and my special favorite…. “Please?”

I went back down to two cans of Compleat Pediatric at night. Three was making her sick. And with two cans she will eat breakfast for me in the morning. She is gaining weight and is up to 29 pounds. I just talked with Josh our NP. I scheduled her line to be taken out September 21. I am so scared not because I don’t think she is well enough….just that it means if she gets sick we must go to the hospital if she needs fluids. AND for Ava this is not a pleasant thing. I may call and change it to October. (Feel free to give me your opinions!!) I’m concerned with the upcoming fall/winter months ahead where the flu runs rampid that she could benefit from the central line IF we needed it. Although I do know that she can’t keep it forever and it is a HUGE infection risk.

She is really doing great. Her bowel movements are SUPER. Actually they have never been better.

Here are some pictures of Grant’s Farm when we were in St. Louis. Ava was thrilled to ride the “train”. She had a huge smile the entire time.

See her checks?

Miss Ava and Daddy feeding the goat. She liked it at the start but then they started trying to eat her shoes and then she was not a happy girl!

The huge turtle!

Ava following the horse hoofs!

Thanks for your continued messages of support and your prayers. We are thrilled so many still follow Miss Ava in sickness and health. She is our miracle.

~Terri

Ava loves the Wiggles!

I am happy to tell you Ava saw the “Wiggles” LIVE in concert last night. She was excited talking about going to the show. Then when we got there she was a little afraid. One thing you have to keep in mind is that Ava has not been around many children or adults. We have sheltered her from sickness and germs. She has never seen more than a few small children at a time in her entire life. She really did not know what to do….a little in shock too! The concert was GREAT! The Wiggles are such happy guys. They are talented. They dance and do flips the whole show. Ava was entranced. I held her at one point but then she wanted down. I made a HUGE sign for her to hold. Murray read it out loud. We were the only ones that had a sparkly sign! We also brought roses for Dinosaur Dorothy!

Thinking about how the Wiggles got Ava through her many, many days in the hospital and how they always seem to make her smile when her little body was fighting so hard makes me know how special they are to her life. It was a “full circle” moment for me. She is getting better and they helped her. We will always be grateful! Her sign says it all, “Miracle Ava loves the Wiggles!”

Before the concert she was all kisses!

Taking pictures around the pond. My sister and her husband made this pond. It is so peaceful and relaxing. We love it!

A few right before the concert.

Daddy got a great picture. Does she not look just like me in this picture?

AND here is Ava at the concert. This is her first expression! She didn’t have any emotion at all. She is much like her Dad….he is hard to read sometimes too!

For those that are not familiar….HERE ARE THE WIGGLES!

SAM!

ANTHONY!

JEFF!

MURRAY!

AND Murray did acknowledge Ava’s sparkly sign!

Thanks Wiggles for a FANTASTIC show! I am so glad we were able to take her. YES I was afraid of the germs….and yes I was a nervous wreck…and yes I am praying she stays healthy BUT she is ALIVE and is healthy at this perfect moment.

“Thank you Lord, Jesus. I am humbled by your gifts you have given us…. We are honored to be able to hold Ava up to you and count our blessings that she was able to experience something every child should…..THE WIGGLES! Continue to give us the strength to live each day and to never forget your goodness.”

First thing when we got home from St. Louis tonight Ava put her Wiggles movie in the DVD player and proudly held up her sign up to the TV screen. It is something I will never forget. I know she will remember this forever. I know I will!

If you will continue to help us pray Ava stays healthy. Tomorrow she will get a blood test to see how all her levels are doing. I’m pretty confident she is doing fabulous! Also pray fro Lexis she is not feeling well tonight. I hope it is not the flu. Her tummy is really bothering her. Thanks for popping in!

~Terri

Gorgeous Day!

I just have to share how great Ava is doing. She is over her cold. It really didn’t mount to much of anything. She is back up to 3 cans of formula at night…..even at that amount she is beginning to eat breakfast. She has been eating more and more. The girls are both over their colds but now Daddy has it!

The weather here in Iowa has been so beautiful. We are enjoying it. I have started the long project of painting our house. I’m talking about the outside. I have already scrapped a few sides and primed them so now to get the paint and work, work, work.

Many have told me time and time again they want pictures. You all know me I have a million of them so here ya go!

We were walking through the park and she nearly lost her shoe. I adore this picture. Imagine where I must be to get this shot?

Ava playing at Grandma H’s!

Enjoying some cold Lemonade with her big sissy.

Saturday we went to the Fair. Ava loves to see ALL the animals. Here were her favorites.

And a few of tonight at my parents house. This is her innocent look!

Ava closely watching Grandpa work. I asked her to stay back. She listened.

Here is hard working Ava. She HAS to pull this heavy wagon all on her own….imagine that?

Her hair is really growing….it turned out a beautiful picture.

And last but not least…Ava and my Father. These two are always hand in hand on Sunday afternoon.

We found out today that the “Wiggles” Ava’s favorite group will be a few hours away on the 11th. We really want her to see them. I’ll keep you posted. Pray things fall into place and this will be something she can enjoy. Her face lights up just at the mention of going to see them!

Again I feel like a broken record…thanks for all your continued thoughts and prayers. Someone asked me today if I thought we were over it all. I said, “only God knows the answer to that but what I do know is that I will cherish everyday I have and have a smile on my face and a joy in my heart.” God is amazing and he seems to be working in our lives to show us true love and His beauty. Thanks a million for stopping by!

~Terri