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Monday this week we had our SSI hearing. For those of you not in the United States, SSI is the Social Security part of our lives. They pay for you to be without a job if you have a proven medical disability. Well here, Cystic Fibrosis is considered one of their medical disabilities, but it has to be severe according to them. I had first applied for Naythan back in 2006 and was denied with them telling me he would grow out of it. Well, 3 years later, we finally got an appeal hearing, this time I think the judge finally seen my side of Naythan's life. He's got so much to do, and is fragile in an open air setting that I think we've won. I am hoping so because this will make Naythan's life much easier when he grows up. We told about a week. Monday isn't getting here fast enough.
Secondly, Naythan is having a new test done, as they aren't sure his enzymes are working correctly. When we first started the new clinic they did a fecal fat test to check to see how it's going. Well, the numbers weren't good, they were really bad. Well, right now we have to do a 3 day fecal fat test. Yup, you read that right. I have to take Naythan off his enzymes for 3 days, and write down EVERYTHING he eats and drinks. Well that's not the bad part, the bad part is I have to collect every bit of poop he has. Yup in a container and store it in my fridge, next to my food :(. Well, the worst part over that is, if you know what CF poop smells like you'd die. A person with CF has very FOUL smelling bowel movements. A person with CF on enzymes it's not so bad, but he's going to be without them for all 3 days. That brings us to the bad part for him. Without the enzymes the stomach can get horrible cramps, large amounts of pain, and lots of gas. I'm hoping he'll be ok over the weekend to do this. I'll just have to rub his poor little belly a lot.
I'm just frustrated that the old clinic told me nothing was wrong before and ignored me. Now I'm having to actually find out what is going on in my poor little boys stomach. Oh well, Good night my CF and non-CF friends. I must get some rest. I will blog tomorrow. We're heading back to the Chiropractor to get some much needed adjustments.
