Day 236 - Amazing Ava

Ava's gas was 59 today even after going down in her settings. They took off the paralytic at 11am today. She awoke pretty happy and content. I was able to come in today from 3pm to after 8pm and I absolutely loved every minute of it. She was so happy, smiling, cooing (if she didn't have a cuffed trach we maybe could have heard it), and even mimicking what my face was doing. I sat her up for a bit in my lap and she even held her head up pretty well. Praise God for this day! I bathed her and changed her trach ties too.

I also got to meet with "Stone's Buddies" who support families coping with chronic illness. http://www.stonesbuddies.org/index.asp We are going to go to a support group they have once a month. I am really looking forward to talking with families with the same type of situation. It really does help knowing your not alone.

The staff at Children's have been really supportive lately about how we can improve Ava's care. I have talked to the charge nurse and thankfully we have been having the nurses that really care and our excited about Ava and love her. (Some of which read this blog!) We are hoping to take a better look at sanitary conditions as well as helping Ava to be more active and productive.

I finally figured out how to post Ava's slideshow from her prayer vigil. Check it out!

Praying for Ava to come home soon and to never get sick again...