Good evening everyone! I typically wouldn’t do this but I have had several people including providers here at Mayo Clinic say it doesn’t hurt to throw it out there. As many of you know, Miss Ava has several health issues. We are currently up at Mayo Clinic in Rochester where we are praying to get some answers. With that being said, there will be more trips up here but so far this week, this has been what’s going on.

Yesterday we just met with the “primary” pediatrician who will be overseeing Ava at Mayo.

Today was more intense. Ava's first appointment was at 7 am today. That was with the immunologist. That Doctor was amazing. She does feel that there was something missing with genetics. She is going to put a referral in with genetics here and see what other testing could be done. She feels there are several physical features that fit with certain genetic conditions..... this doctor also ordered a CT of her lungs under sedation. This will be happening Friday morning. So we probably won't be leaving until Saturday now. During this scan and while she is under, they will be doing blood work and ordered several different labs like CK levels and amino acid checks.... we also saw the GI/ hepatology doctor earlier today who also add more labs. They also want to EGD while she is under to look at her tummy. This could be happening on Friday morning as well because she will already be under.

Tomorrow we see ENT, pulmonologist, and Genetics. There are so many questions and unknowns right now but I know we are in the right place. I wasn’t going to start a go fund me, but between lodging, food, traveling, both John and I taking time off work, etc…. It is A LOT!!! I also want to add, even if you can’t make a donation, we will take all the prayers we can get. We just want answers. It is to the point where she scream and cries big tears when we leave the hotel because she knows we’re going to the doctor. No two year should have to go through all this. I kindly thank you for your time in reading this and would love some prayers and positive vibes sent our way!!!!

I will also be keeping everyone updated on Ava’s future appointments this week along with procedures