Kylie1At 1 month old, Kylie was diagnosed with Cystic Fibrosis through the infant screen test.  As most people would be, we were shocked and devastated.  But it was then we knew that we would fight as hard as we could for our baby girl, fight for her health and fight for a cure.  As an infant, Kylie was not thriving.  This is mainly due to the fact that people with CF do not absorb fat.  They take enzymes with every snack and meal to help digest the fat.  At 18 months old, Kylie got a feeding tube to help her gain weight. She is now thriving in the 65th percentile!  She has been hospitalized 2 times for “tune ups” where she was admitted for 14 days of IV antibiotics via a PICC line to “clean out” her body and give her system a boost.  Her most recent hospitalization was for Strep and dehydration.  Kylie has cultured various bad bacterias in her lungs such as MRSA and Psuedomonas.  These must be fought off with antibiotics and extra treatments, and it’s only a matter of time until they come back again.   We get asked several times throughout the year “How is your daughter doing?” and our usual response is “she is doing well”. The reality is that Kylie is a very sick little girl that’s doing great with an incredible daily routine managing her CF. Her treatment times continuously increase when Kylie is sick. She does up to 3 nebulizer treatments, 2-3 20 min. vest treatments, and 3 tube feedings all in just one day, just to stay one step ahead of this disease and to fight bacteria in her lungs.  With the help of feeding therapy, Kylie has made great gains with her eating. She is showing a ton of interest in trying different foods and experiments with taking bites and eating small amounts. Kylie continues to be on 7-9 different medications depending on her health. Kylie does pretty well with all her treatments, tube feedings, and medications.  They have become part of her daily routine and it is all she knows.  We hope and pray that one day CF will stand for Cure Found!