Kara was diagnosed with food protein induced enterocolitis syndrome (FPIES) in August of 2010. She has had many FPIES reactions and complications that have lead to numerous hospitalizations and specialist appointments. It was a huge sigh of relief to finally have some answers and a diagnosis, however we have to remind ourselves daily that this is a very serious disease and this is only the beginning of the long road we have in front of us.

Wednesday, April 6, 2011

Neocate: Three and Final!

Our formula battle has been stressing me out, to say the least. We have too many things going on right now, that I may get the time to blog about some day but this one really had me worried. Finances are getting out of control with medical bills at 18 different providers (that may be a slight exaggeration but it sure feels like it!) and many upcoming appointments, which means traveling expense, meal expense and time off work. Top this with the almost $3,000 formula bill lurking over our heads and we were starting to panic.

Brian took our appeal packet to the post office on Monday afternoon. I was figuring it'd be a minimum of two weeks before we hear anything back. I work in medical billing so I know how these things can go. I decided it is what it is and to just relax until we knew either way. In the meantime, I've watched our dwindling formula supply as Kara asked for another bottle.

This morning, I was busy at work when an email popped up on my screen from our insurance representative. Her and I have been on emailing basis throughout this process. The subject was "KARA" and inside it said "Will you please call me when you get a chance." My heart absolutely sunk. I wasn't able to call right away but within minutes I was able to get on the phone. She said "I just want to let you know, instead of making you wait, that it was decided that Kara's formula will be covered." OH MY GOSH!. I nearly started to bawl on the phone! She went through the details of how they decided it was something that they shouldn't even second guess, covering it would be the right thing to do. I asked if it was something they were going to put a limit on, like six months of coverage, and she said no, they are just going to cover it as it comes. I thanked her, thanked her again, and yet again. I told her she has no idea how much this means to me. I got off the phone teary eyed and shared my joy with a coworker. This was going to be a wonderful day, things are looking up!

As soon as I pulled myself together, I called North Central Medical Supply to talk to our biller there about our news. She is getting it all together and shared in my joy. They have been absolutely wonderful for us to work with, letting us pay as we have the money to pay and hanging in there with us as we figured this formula battle out. I often remind myself of our beginning battle of even trying to find a provider to ORDER it for us. We couldn't have gotten more lucky with who we have!

I hope this is the last post I have to write about formula - at least until I can write the post stating that Kara is DONE with needing Neocate!

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