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Saturday, January 25, 2014

A CF Week

This week has been pretty consumed by cystic fibrosis. Bethany got a cold and then a slight cough and then she was coughing so much she was gagging and vomiting. A simple cold isn't always a simple cold when you have CF. So, now she is on 21 days of antibiotic along with extra nebulizer treatments each day, and 4 vest treatments along with two inhaler treatments. To make matters even worse, she just won't eat. She never eats much and it is always a job to get food into her, but this week has been awful. I think I have spent just about my entire day today standing over her trying to get her to eat something -- anything -- 45 minutes to get one banana in her and that was her entire breakfast. This is a kid that needs 2,500 calories each day according to her nutritionist  -- kids with CF need extra calories. It is so hard to get any weight on her and lung function is directly related to weight. Don't ask me why so many kids with CF don't want to eat, but it is very common. So, this has been a week of treatments and me pushing and pushing food -- which isn't working very well. At least I can get her to drink orange juice and maybe a PediaSure -- that adds a few calories. I will certainly be glad when she is better.


























Bella is doing so well, lately. Every single day when Bill comes home she says "Hi, Dad," as he walks in. Bill loves it. Here she is dressed up in a princess costume -- she definitely thinks she is a princess and we do, too.



1 comment:

  1. Sweet Bethany! I will say a prayer for her. Bella certainly looks like a princess. Look out Princess Kate!

    Sue H.

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