Saturday, August 14, 2010

Our Story

     I'm a mom of a sweet & very funny little girl, Rachel (4).  Rachel was diagnosed with cystic fibrosis (CF)  at 6 months.  Rachel has to do a lot to keep herself healthy.  She currently does 2 breathing treatments (one of them twice daily), chest therapy (to keep mucus from building up in her lungs), an inhaler, a special multivitamin, 2 pills to keep her liver healthy, 2 pills just before each meal & 1 before a snack, and 2 antacid pills......all this everyday.  She goes to "CF clinic" for a routine check-up every three months.  At clinic, Rachel sees a pediatric pulmonologist, a nurse, a respiratory therapist, a dietitian, a social worker, a  gastroenterologist , a pediatric psychologist, & a child life specialist.   She gets a number of chest x-rays, abdominal ultrasounds, and bronchoscopys.   Rachel had 3 different lung infections last year.  It's a lot and this really isn't all.  It's a pretty good start though for those who don't know about CF.  
     Having said all of the above, Rachel is just about the happiest little girl I know.  She is very sweet, funny, and thoughtful.  She is learning more and more each day how to take care of herself.  I've begun to let her do some of her own care and get her ideas on things.  She's hit some milestones this year.  On New Year's Eve, she began swallowing pills whole.  We were all excited about that.  For one, she was only 3 and learned how to swallow pills.....and for two, that made my life easier because that meant no more crushing pills or breaking them open and hiding them in applesauce.  She is beginning to talk to the doctors and other practitioners about herself.  I really encourage that because I want her to learn early that she needs to be her own advocate.  She can start her chest therapy/breathing treatments after they've been set-up.  
     Having to deal with CF and the gloom it brings, we try to keep a positive tone in our life.  We do what we have to do and get on with our day.  Sure, it's hard sometimes, as there is no cure for this deadly disease and the current average life expectancy is only 37....but I feel "feeling sorry" for Rachel would do her no good. 
    I had planned for this blog to serve as a form of awareness for CF and a place for people with a connection to CF could go and look around.  So, bare with me....I'm still building my blog.  Hope you have a great day.  

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