Again wishing I had something more positive to report but this photo is one of only a hand full of times Abri has sat up in the last 2 weeks. The pain med we had her on that finally helped had side effects that again proved to do more harm than good so we had to stop it as well. The blood infection cleared finally so we were able to put in a new picc line & we also placed another nj tube hoping that restarting feeds would go better now that she had a break from them for a while. Unfortunately the feeds are causing worse pain and she is not passing them again. Abri spends her days crying, moaning and screaming then apologizing for being so loud. She is trying so hard to participate in musical, art therapy & physical therapy. She does what each asks of her even though she would rather just lay in bed since sitting up makes her pain worse. We still have no answers but she is currently in the OR having a new more aggressive procedure done that we are praying will finally give her some pain relief. This procedure comes with more risks than ones she has had previously so she will be in the ICU for the next few days for closer monitoring. The only things we do know that the doctors have explained time and time again to us is that her pain is real, she does not have an eating disorder, this is most likely a side effect of her cancer treatments, there is no compression syndromes that they can see and she is not the only kid in this same complex boat. We also know that the code and the seizure like episode last week has left her with more medical trauma anxiety and she has started some anxiety meds and psychological therapy to help with that. We are praying that this procedure today helps her pain but we are also not naïve to the fact that this will still be a long journey. How she is staying even a little bit positive through all of this is amazing to me. This has taken a serious toll on her body and her mind. It will take a lot of work to get her back to where she once was. When I asked her what she would do if I could snap my fingers and make this all better she said “eat pistachios and grapes and go back to working at the church”. Praying we get there soon. 🙏🏻❤️