Trying to keep going......

Haven't felt much like blogging. So much going on that is taking me a while to process. I am just going to spit out the short version. Celia has gone backwards since coming home from the hospital. Her mood has improved with the highest dose of steroids however her bowels continue to go backwards. We will now be moving right past the mid level drugs to the highest level. She will start Remicade infusions in a few weeks. This will kill her immune system making her susceptible to everything including several kinds of cancer. Even the common cold could be fatal. She has been stable for so long I have been having a hard time with this kick in the stomach!!!! To add to everything. her last blood draw showed problems with her liver. We re-drew labs this week and has a liver ultrasound. Still waiting to hear on these things. Please pray for my baby girl as we travel this horrible road!!