Lanie's Story

Lanie was born on February 18 2009, and weighed 7 lbs 3ozs . We brought her home on Feb. 21,2009 only thinking she was perfectly healthy. As weeks passed by she was growing and before we knew it she was 2 weeks old. On her 2 week appointment she weighed 8lbs 2ozs, she was getting so big. When Lanie was 19 days old we found out her PKU was abnormal and 2 days later we went to Scottish rite to have a sweat test done. We waited to find out the results and it came back positive. It was 1 week later we returned for the second sweat test only to find out she had Cystic Fibrosis. As any mother would be I was devastated, not knowing anything about CF I was looking for answers. We had to go back to Scottish rite and meet the digestive doctor and take a stool sample to she if Lanie's pancreas was sufficient. While we were there she went ahead and done a throat culture to make sure she did not have any bacteria growing in her mucus. She sent us home with the enzymes for her pancreas and said she would call us with the results from all the test. A few days later she called and said her pancreas was working but not 100% so she told me to start the enzymes, and that her culture came back negative which was great. Dr. Pilzer scheduled us to come back in 1 week to she how she was doing on her enzymes and to check her weight. On March 4 we went back for her check up and she got a great report , she weighed 9lbs 13ozs. Dr. Pilzer noticed she was alittle jaundice so we went for some blood work and a few other test of her liver and gallbladder. Lanie's gallbladder was working slow so they put her on Ursodiol to help it function properly, and said she would recheck her in a few months to see how it was doing.