So confused, frustrated, tired and sick of FPIES!!

We have no idea what is going on with Iyla at the moment. She just isn't getting better...well we might have a good day or two here or there...but mostly she is miserable, sleeping crap, eating very little, pooing out copious amounts of mucous, then pooing out hard pebbles and randomly vomiting. Every time we start to get excited that she is getting better things go down hill again and i'm ready to scream to the world that i HATE FPIES!!! 

I'm sure everyone that see us thinks things must be going well because every time we drop Connor off at school or pick him up she is full of smiles and cute hellos for anyone walking past. I'm thankful for the fact that after the screaming in the car the whole way to school i get a few minutes of peace (until we are back in the car or home again) but i feel like she is making me look like i'm making this whole thing up. Trust me, i wish i was! I would stop 'making it up' in a heartbeat so that we could have our happy little girl back. 

We are thinking that her reaction to the soy in the homebrand wheat biscuits has messed up her gut and that it might take awhile for things to go fully back to normal. We are also wondering if it will be worth it to put her on complete gut rest for a week. That means no solid food and only formula. I'll talk to her dietician about it first and see what she thinks. Iyla will hate it and i know it will rough on us too as getting her to drink her bottles lately is a huge battle. But something needs to change before we all go completely insane.