Hello to all you Ava followers out there! Ava has been truckin’ along pretty good. It was just last Thursday night she was admitted to the University of Iowa hospitals. Wow what I week! I didn’t see that one coming. We are trying to catch up on our sleep…..not easy to do. Ava’s been sleeping great…….if only her feeding machine would do the same. ;)
A few months ago one of you wonderful people out there gave me a website (www.songsoflove.org ) that writes songs for critically ill children. I filled out an application, a few days later we got an email saying they were in the process of writing her song. ALL personalized just for us…..all about Ava. I had to write what she liked and all our names. Well it came in the mail on Wednesday. I cried when l heard it. The songs is Ava. I am putting this beautiful song on a video so you all can hear and see how far this girl has come. I’ve named the song….. “She’s out little Girl.” It was written by Thomas Jones. I just love it so much. I can’t wait for you all to hear it. Ava dances to it.
As always I took more pictures of Miss thing. Last night we went out to my parents house to let Ava do her Easter egg hunt. She had so much fun! Then after she found about 10 eggs she was done. She wanted to swing…..figures huh? I just stand back and thank God that I can watch her do these precious small pleasures. I love to capture it on film. Maybe one of the reasons I love photography.
“Ava can you hold all of that?”
Swing time. She LOVES to swing! She can swing for hours.
“Grandma D can you keep up with her?”
So no one should worry that Ava missed out on the Easter egg hunt. She had plenty of fun! She has been eating more but it comes and goes in waves. I talked with her dietician yesterday as I am concerned about her weight loss and how many calories she needs. We have bumped her up to 900 ml’s of 30 calories formula. (Elecare) She is doing better. The other day we got up to 1005 ml’s in 24 hours. I weighed Ava this morning and she is 25.5 down 2 whole pounds since a week ago. I hate to see this but I’m praying it is just her body’s way of getting back to normal without the TPN. Her chest is healing very nicely. I’m thinking the scar will not be noticeable in a few months. She eats so much more than she did a week ago….so we just have to trust that God will pull her through this feeding thing too.
I took a few pictures of her on Tuesday a few hours before my photography class. She and Emeline were my models. I’m pretty lucky!
“I ADORE this picture of my Sweet Emeline.”
“My new favorite picture of Ava.”
I want to thank Gayl, The Collins Family, Caterina and my sister Amanda for sending Ava and the girls things for Easter. It was so very nice of you all to think about them. The as all kids love things in the mail.
Thanks so much for dropping by I know life is busy and it means so much to me that you check in and that you say a prayer or two for our Ava. She truly makes us stop and thank God for His blessings as there are so many each day. We believe in Miracles for we have witnessed them with our own eyes many, many times in Ava’s life. Please stop back and next time I will have added Ava’s new video with her song on it. Until then, Blessings to all!