Tuesday, September 7, 2010

Does it ever end?

     Where shall I start? Courtney had her CF clinic appointment today. That meant she had to get up a hour earlier than normal so she was up at 5:00 A.M. so she could do a hour of treatment and then eat and get dressed. Well even though she got up when she did and I got up at 4:30 A.M. we still some how left the house late and so there for we were late for her appointment but only like 10 minutes. That's when it all went up and down hill. She weighs 42.6 lbs so she gained 1 pound in 2 months I will take that but I wish it would have been more since it's getting that time of year again. Her doctor thinks her cough is more allergy and asthma related but want to finish her antibiotics and she is on Orapred 2 times a day of three days and she is now going to be taking a total of 40 mgs of Prilosec 20 mg 2 times a day. Her doctor had also asked me if she has ever had sinus surgery and then when I replied with no the next question was has she ever had a CT scan of her sinus, I felt like saying her chart is right there look but I didn't. I replied back with I think so and I think it was over a year ago when she was in the hospital so we may be looking at a CT scan and or sinus surgery. Not what I wanted to hear. She had a throat culture done today and bless her little heart she said can't I just get a shot instead. Well, her throat culture got done but 2 tries and I swear like 15-20 minutes later we finally got it. She signed a contract with her doctor saying by the time she goes back she will be able to spit for her sputum culture. We were also told that she can do her Pulmozyme when she is doing her vest. I was a happy mommy to hear this. She now has to do her Advair with a spacer with just the mouth piece. We go back in 6 weeks instead of 8 weeks and I don't know how I feel about that one. She is also running a fever 99.7 at clinic and that's what it seems to be hanging at so I kept her home and my poor baby hasn't had a chance to rest.

     The school is giving me a hard time because I am wanting a 504 plan for her and not a health care plan. School nurse called me today saying this and that and trying to tell me a 504 was like a IEP and I told her very nicely I don't think so I know what a IEP is for because my oldest has one. I think it's because they don't want to do all the paper work!!!! The nurse sent Courtney's health care plan home with her last week from last year and I about had to laugh because it was a joke granted it had what I needed in there but a lot of other BS!!!! Well, I am off to spend time with my girls before dinner time and treatments.

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