Thursday, October 23, 2014

Life changes

Hello Ava followers! I'm sorry it's been awhile since an update. Things have been a little crazy around here lately. We did have several good things happen with Ava that I did need to update on but life has just been so hectic I haven't had time. My grandfather passed away and that threw us all. He was healthy and active so it came as a surprise that he got a flu shot and then a week later developed double pneumonia then was put into the ICU at our local hospital and a week and a half late he died. It has been tough to say the least. Ava was very sad over the loss of her great grandfather. He would always ask for many hugs as he loved her so much and always bragged about Ava and the Miracle she is to all he knew. We will miss him greatly.

Here is a picture of Ava and her great grandpa Delbert. "We will see you again Grandpa!"

Last month Children's Hospital of Philadelphia went "on the road" to Chicago for a reunion. I thought it was a great opportunity for us to see them all again. (It's so hard to travel all the way to CHOP for their Summer reunions there.) This was a great option for our family. They held it at the Chicago Zoo. What a great time we had. Ava was so happy to be able to see her surgeon Dr. Scott Adzick. I am always so thankful and in awe of him for all he does to help families! 

It's so nice meeting other families who struggled, for we know we aren't alone. It's so easy to connect and understand each other!

Here is Ava with Dr. Adzick.

Our family minus Lexis. She had other plans that day. We love Dr. Adzick.

Ava also had her yearly check-up with Surgery. They were thrilled with how well she is doing. Her weight was 51 pounds and her height was 4' 5.7". She is growing great.

(Doctor visit stats- Blood Pressure was 112/60. Pulse 86 | Temperature was 98.6 °F | Respiratory rate  24 |  BMI 12.65 kg/m2)

Her reflux is staying about the same. I've been really stressing for her to avoid people with a cough and to keep her hands away from her mouth when she is at school. Last cold she had in August she stayed home a few days then I sent her back to school. She didn't get any worse so to me that was big!

Josh her nurse practitioner was so happy to see her. Dr. Shilyansky was busy so we didn't get to see him. I was a little disappointed but I know how it goes. I remember when she saw him often as she was very sick. God has been good!

Here is Ava and I... on rare occasions Brian comes with us to her appointments in Iowa City. I always make him take a picture of us. People tell us we look alike...

Here is Ava's lung X rays. As you can see her left side doesn't look like the right. She was born with no left diaphragm at all. As you can see her stomach is the air pocket right under her diaphragm. It all looks... well expected of a diaphragmatic hernia survivor. I made this to help show other CDH parents but thought you guys might like to see her x rays as well.

They are still in the process of remodeling the children's hospital. We take a minute and get pictures of the progress. It should be something amazing when completed. We are hoping Ava never gets to use it!

Thanks so much for taking time out of your day to read about little Ava. We enjoy allowing you along on this journey. She is pretty excited about Halloween. I made her an Elsa costume. It's quite fitting I think.... Elsa had something "wrong" with her too and what did she did? She accepted it and embraced her difference. Ava does this every single say and we LOVE her for it! Keep the Faith! We love and thank you for praying and supporting our little girl.

~Terri L. Helmick