Hi all!
I have been lurking on this site for about 5 months now and have made a few anon posts. My husband and I have 3 kids--Alyssa 8, Matthew 5, and Daniel 2. Danny has CF. We did not know we were carriers until my 20th week of pregnancy with Danny when the dr saw an echogenic bowel. To make a long story short, Danny was born with meconium ileus, has surgery at 5 days old, had an ostomy for about 3 months, had an initial hospital stay of about 7 weeks, had numerous feeding issues, weight gain issues, gerd, blood infection, liver issues. It seemed that for every one step forward there were two steps back. He came home with his PICC(4th one, by the way) and was on TPN and lipids because he just wasn't taking enough formula. We have come a long was since then. He is 25 months right now and doing well. He weighs a little over 33 lbs so he is growing great. I'm not saying that we don't have struggles with food because we do. Danny is allergic to lots of food--the biggest challenge being wheat. He hasn't been hospitalized for any lung issues and never been on antibiotics. He takes Creon 5, Vitamax, Pepcid, Vit K, Albuterol, and Pulmozyme. In March we received his vest--it has been great. We were initially denied by our insurance but with the help of Hill-Rom we won our appeal.
I have been reading and learning alot from all of your posts and just want to say thank you. You all are so supportive. I wish I had found this board sooner.
I have been lurking on this site for about 5 months now and have made a few anon posts. My husband and I have 3 kids--Alyssa 8, Matthew 5, and Daniel 2. Danny has CF. We did not know we were carriers until my 20th week of pregnancy with Danny when the dr saw an echogenic bowel. To make a long story short, Danny was born with meconium ileus, has surgery at 5 days old, had an ostomy for about 3 months, had an initial hospital stay of about 7 weeks, had numerous feeding issues, weight gain issues, gerd, blood infection, liver issues. It seemed that for every one step forward there were two steps back. He came home with his PICC(4th one, by the way) and was on TPN and lipids because he just wasn't taking enough formula. We have come a long was since then. He is 25 months right now and doing well. He weighs a little over 33 lbs so he is growing great. I'm not saying that we don't have struggles with food because we do. Danny is allergic to lots of food--the biggest challenge being wheat. He hasn't been hospitalized for any lung issues and never been on antibiotics. He takes Creon 5, Vitamax, Pepcid, Vit K, Albuterol, and Pulmozyme. In March we received his vest--it has been great. We were initially denied by our insurance but with the help of Hill-Rom we won our appeal.
I have been reading and learning alot from all of your posts and just want to say thank you. You all are so supportive. I wish I had found this board sooner.