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.

Another rough few weeks

We have had some more issues with Iyla over the past few weeks. She seems to be having reaction after reaction. She has reacted to homebrand wheat biscuits (after we found out they have soy in them) so it's back to vita brits. She also reacted to the compounded paracetamol we got for her. So frustrating to still not have something to help her with teething pain and fevers. After talking to the pharmacist they confirmed that no food products were used to make her paracetamol and it seems it's just the paracetamol itself she is allergic to. Vanilla essence is another thing she reacted to. I added 1 teaspoon to a cake i made for her and it was a huge no go. I've since made the same cake again but replaced the vanilla essence for golden syrup. It's a huge hit! She also reacted to yeast after Reuben really wanted to try make her bread. I really need to get onto trying sourdough! And last but not least she reacted to a tiny piece of apple Abbey dropped on the floor. That made for 2 awful sleepless nights and an unending amount of poo! She is lots happier today, although still off most food and drink.

I'm sure you can all understand this has left me pretty exhausted. I'm seriously hoping for a few weeks reaction free so I can catch up with sleep and housework, and also not have to listen to crying almost all day long. I have been coping mostly ok, but the last few days have been extra rough. I seem to get to a point that it all gets too much and i find it hard to do anything but the bare necessities. I know if things keep improving i'll be back to my normal self in a few days. But my kids and husband need to be patient with me. Thankfully Reuben has been amazing and listens to all my complaining and gives me a much needed break when he gets home from work. Connor and Abbey seem to sense when things aren't going so well and they play up big time. I work hard to still pay enough attention to them but they always seem to get extra clingy when Iyla isn't well. I guess her crying gets on their nerves too. 

Hopefully when things have settled down some more we can start another trial. But i'm not going to push it right now. We all need a bit of a break.