Quarterly CF Team Appointment

Oops, I almost forgot the appointment until they called to remind me! I'd never written it into my all encompassing calendar of events, but we made it work.


THANK GOODNESS our favorite nurse, Kasey, is BACK from her leave! She looked beautiful and refreshed and noted that she's ready to focus on work. We love her. I first met her the day I was in labor. She sat with me, cried with me and unbeknownst to us all then, that was the first day she became a part of our family because 2 weeks later Faith was officially diagnosed with cystic fibrosis. We've seen her at least every 3 months for the past 5 years.

Morgan couldn't make it to the appointment due to work and my forgetfulness. My good friend Tiffany watched Brooke so I didn't have to take both girls by myself. Faith did well as usual. She stayed busy on a workbook or playing games on the phone. Her lungs sounded clear, a throat culture was taken and the bad news....she's lost a pound. Ugh, again. Weight gain is always our issue. She just doesn't have a big appetite as it is, but then add on that she was on antibiotics for 4 weeks and it's warm outside and it doesn't help matters. Plus, her high calorie drink that she usually has daily (375 calories with breakfast) we are no longer receiving due to a change in insurance and pharmacies. Looking into options to get them back....

That weight loss puts her right back to the 50% range for BMI....to me that's a C- if we're grading it. Not her fault. Not anyone's fault really b/c we always try very hard to get her eating, but I still take it personally and think what more can we be doing?

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