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.

11/7/04

Sorry we haven't posted for a few days. The appoinment last Wednesday with the genetics specialist went well. We didn't really learn anything new, the doctors couldn't tell us anything definite because they don't know for sure. So we are just going to continue doing the course of action as we are and watch his development. They were pleased to see how much better he looks compared to how he looked in the hospital.
We're changing his meds a little, trying to figure out what mixture of meds will work best for him and keep him stable without pain. Nutritionally he's been given a microlipid to help him gain weight. He's also been given a new antibiotic which has been upsetting his stomach and causing pain. His doctor said that he'll probably be off and on with antibiotics which worries me.
We're setting a pattern of doctor visits almost daily or atleast 3 times a week. Hopefully things will settle in a little while.
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Cass in his bath Monday 

Cass having a bath Monday. 

Cass after his bath on Monday. He loves his bath time and enjoys getting everyone wet!