Caregiving resources for parents of ITP kids?

In the last 7 months I've been exposed to the roller coaster aka ITP to a 3yo daughter. She's received 2 IVIG's, had multiple falls and hits to the head (remember this came on when seh was learning to fine tune her walking skills and now she's on to jumping, climbing, etc)...There's SOME flexibility to my work schedule, but not much and the fact that I'm missing so much time for multiple issues that continue to arise, I'm wondering what, if any, resources are governmentally available to parents/caregivers to kids of ITP, as well as available through other resources. My fear is that while I've started a new job about the time she was diagnosed, support by employers only extends so far and I don't want to find myself in situation without insurance, and without income. (PS...we're in Fla.)

Any recommendations on how other parents have done it is helpful. While I'm married, my hubby is also disabled and technically I'm caregiver for two and it's tough without family nearby and i've learned that when life gets tough that people you THOUGHT you were close with, aren't really there as much as they once promised. Toughing it alone, but through the Grace of God.