We've been battling an infection this weekend and week in Cass' trach. He started an antibiotic last Thursday but a bad reaction to it by Friday night so we had to stop it. The doctors want to wait to start another to give him a rest, meanwhile he's not feeling to well. His weight is up to 11 lbs which gives us reason to celebrate, even though he is still in the 3% for his weight.
Today we met with SSI (Social Security) again. This time they gave a denial letter and said that they couldn't help us because we made too much money even though they agreed that nobody could afford Cass' medical costs. We hoped for the best, but expected to be denied, but we wanted it in writing. We're trying to get him on DDD (Division of Developmental Disabilities) but it seems as though any government program, state or federal, is denying us because of income. Eligibility is based primarily on income and not upon the disability. I think the system is pretty messed up. We don't want money, food, etc. We'd even take an insurance program that cost us a couple of hundred dollars a month, but no one will touch Cass. We can't find an insurance group that will cover him. I naively assumed that when something catastrophic happens there were these programs set up to help and give aid. You can never prepare enough for something catastrophic. Ryan and I prepared for a normal delivery and healthy child, but this is beyond our means financially. All the programs are income based, not disability based. We have even had the advice given twice that Cass would definitely qualify for programs if Ryan and I divorced. I'm appalled that it was even mentioned. Now we're collecting rejection letters to give us ammo. We're not feeling beaten, just exhausted.