Our sweet baby

We have been given the devastating news at 4 weeks old that Kylie has Cystic Fibrosis. It was picked up on her infant screening. We have been coping as best as we can and are trying to learn as much as we can right now about this disease. Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States. A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections; and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food. The average life span of a person with CF is in the 30s, but we are fortunate to have caught this as an infant and have been told that the life span will continue to increase and she should live a full life. At this time, we are unsure of what Kylie's future will be. She has one very common gene mutation and one rare one, so it's difficult to predict how severe she will have the disease. So far, we know that her pancreas has tested as severe, meaning she would not be able to digest her food or keep fat in. To help her with this problem, she has been put on enzymes that she takes before every feeding. She will need to take enzymes for the rest of her life every time she eats. She is also on a liquid vitamin and an 1/8tsp. salt. each day. The main focus right now is to keep her gaining weight, which she has been doing wonderfully (she's over 8 pounds now!) and to keep her lungs clear. Eventually, we will start her on breathing treatments and chest therapies daily to clear her mucus from her lungs. For more information on CF, you can visit http://www.cff.org. We want to thank our family and friends for all the support you have given us so far! We'll keep you posted on Kylie's progess!