Appt

We had our appt this morning with Dr Pfaff.  He was pretty funny and entertaining!  He asked a ton of questions and went through a questionnaire to determine if she was experiencing a pulmonary exasperation. She is still coughing but over this weekend she was doing better.  She also gained weight and has no fever.  So yes, the cough has lasted a month, but he does not suggest to admit her...sigh of relief.  He did say if she got worse we would have to do a tune up in the hospital.  I have to call on Thursday to inform them on her health.  My gut tells me we will be fine. 

I know I keep referring to my 'gut' on things, but I am quickly finding there is not a lot of black and white with CF.  It is not like she cultures strep and you put her on antibiotics to treat it.  It is a bunch of damn GRAY area.  It is a bit frustrating to navigate this disease.  It is a bunch of hunches and gut feelings that tell you if your kid is sick.  Then what do you do, do you call the dr, do you push for an appt, do you describe her cough well enough so they understand what it is like, do you tell them she had irregular bowel movements yesterday but not the day before, do you tell them her stomach hurt this morning but not now, do you tell them she slept over three hours on Wednesday for her nap, do you tell them that she has been burping a lot lately, do you tell them that you accidentally gave her yogurt one hour after you gave her the CRAPPY cipro they prescribed......oops...I could go on and on...but I won't :) 

Anyways this disease is frustrating at times.  It is times like these I remember there HAS to be a cure around the corner. 

On a very positive note and happy note, we went to the Sea Life Aquarium after the dr appt.  Avery LOVED it.  She was so excited to see all of the fish and I was surprised she could name so many of them.  I guess she is retaining some things we talk about!  We also walked around Grapevine Mills Mall and had lunch together.  I think I was feeling guilty that I drug her over to a dr appt she didn't really need:)