Bah!

That's about all I can say when asked "How's things with Lucy?"
Its frustrating. Shes becoming an absolute rail and just doesn't even act like her usual spunky self these days. I want to help her but I don't even know which way is up anymore. Should I push her to eat more so that she doesn't waste away, or will that only put her in further pain and make her condition worse?
Her lips reached an all-time AWFUL yesterday when she woke up from her nap . Her cheeks, mouth and hands were covered in blood, and her pillow case had soaked a 3 inch spot straight through to the pillow. She has deep dark circles around her eyes and little red spots on her cheeks. Lucy also hasn't slept through the night in so long I cant remember. Some nights shes up once, others its 4 or more times. Friday night she had a diaper blowout around 11pm, and is now constipated- which is probably not good.
AND, the hospital STILL hasn't called to set up her scope!!! This is only going to further delay treatment for her!!! Ahhhhh! Sitting back and doing nothing while my daughter is clearly not doing well is just not something I am comfortable with. Lucy hasn't been in a boat this bad since she was a newborn, and I felt helpless back then too.
I am going to see if I can get in touch with at least ONE of our specialists tomorrow just to update the situation and hopefully get some reassurance that things are being done to improve her situation.
Thanks for checking in!