I Believe in Me!

Hey guys. We were so excited when we found out favorite nurse Maja was back. Ava and her really click. She brings so much life to our room. She feels like family already. It's crazy how hard this hospital stay is but wonderful nurses and staff make it bearable... that was Ava's word.

Ava got a central line today (PICC) to get TPN which is nutrition from an IV since she can't tolerate food. It is in her right hand upper forearm. Ava had the option to do the procedure with or without sedation. She choose without! She said the only thing she felt was a prick from the numbing medicine. Maja encouraged Ava to name her PICC line. Ava choose Princess Fiona. This little lady cracks me up. We are so happy to have Ava's personality back... she is uncensored and totally real with anyone that asks her how she is doing. She is tired of everyone asking her how she is feeling and how do you rate your pain. So her plan is to say it as soon as they come in the door. "Fine and 2!... or whatever her pain level is at the time.

Kirsten our amazing music therapist came in and, oh my goodness Ava played the xylophone!! Kirsten seriously is a miracle worker. She had her guitar and played a blue-sie song... encouraging Ava to play with her on the xylophone. She held back at the start but then you'd think that Ava was a pro! I'm so glad I videoed this. It makes me heart so happy! See that smile? I love it.

This afternoon Brian left to talk to his work. Ava and I went for a short walk outside. We had to take her IV pole with us and it was almost 90 degrees... hot and muggy outside. It was nice to just breath fresh air! We sent a snap to Emeline and she sent this back to us. She is always encouraging Ava to be strong, keep fighting and that we all love her so much. Sisters are the BEST!

Ava spent 2 hours off of suction. She did not feel sick and had no pain. We hope to get to a point when her ng output is very low and whatever is blocking her bowels will push through and she can eat and drink again. In the meantime we will just be thankful she is here and that she has no pain. The tube is not at all what we ever wanted again but it is the only way to make her better. It's very hard but she is adjusting better now.

The Shopland's sent Ava this shirt and socks. They are wonderful friends we met at the New Jersey, Ronald McDonald's when Ava was born. Their oldest daughter was born with a birth defect and was treated at CHOP. We love then so much and are so happy to have their love and support at this time. Her shirt says, "Once in awhile someone Amazing comes along... and here I am." It's perfect!! 

So they just started Ava's TPN and lipids tonight. I remember these bags from her central line in 2009. However they have gotten BIG! Woah.... I guess she has grown too! I'm so thankful and relieved she is getting the nutrition she needs! I painted her fingernails and she is watching Cars now. All ready for bed. We had a very good day.

Thanks for all the love, thoughts, gifts, cards, support and prayers. As Kirsten sang today. "I Believe in Me!" and we certainly believe in Ava! "God thank you for keeping her safe. We pray she gets better and better each day. Amen."

-Terri