Wednesday, November 17, 2004

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.

4 Comments:

Anonymous Anonymous said...

I'll be praying for the healing of Cass' infection, and as well as the whole insurance/coverage situation. That must be so frustrating! God bless!
Allie

November 20, 2004 at 5:56 PM  
Blogger Luke's Mom said...

I think of you all often and wonder how things are going. I'm sorry to hear that you have been having to deal with all these problems on top of the exhausting role of taking care of Cass. I hope that they are still allowing you your nursing hours, I know how draining it can be to take care of a little one with health problems. I too get very upset at times with all that we have to deal with. It seems that our Insurance company wants us to have the cheapest of all equipment. We are continually having to beg it seems at times for simple things like an extra Trach.
I will be praying that things will start to go a little smoother for you. If you ever need a listening ear to talk or just vent for awhile you have my number.

Love in Christ,
Sue Searles

November 20, 2004 at 11:24 PM  
Anonymous Anonymous said...

Dear little Cass & your Mommy and Daddy,
We are little Luke Searles "great" Uncle & Auntie. We read your blogspot this morning and want you to know we will be praying MUCH for precious little Cass.....God is a prayer answering God....we have seen prayers answered time and time again....will pray first for a miracle in little Cass.....and the situation with your insurance companies, etc. God loves you all soooo much.....our lives (and yours) are in His Hands. (We have a senior's prayer group....will put Cass's name on their list for prayer). May the Lord bless you with added strength and may you sense His presence and love in a very "special" way.

November 21, 2004 at 8:12 AM  
Anonymous Anonymous said...

Check out www.tumbleweedfoundation.com This is a wonderful site where you might be able to have Cass and his story and blog featured.

November 22, 2004 at 2:21 PM  

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