We have also been looking into purchasing a air purifier because we live in the coal region and I thought it would be good for our son and then someone told me if we don't clean it every couple of...
Hi Jodi, How are things going? Haven't talked to you in a while and was just wondering how Bailee was doing? Conner is doing great! He weighs about 14lbs and is eating some cereal with fruit and...
Hi Only A my name is Heather and i have a son who is 3 months old with CF.We found out he had it when his newborn screening came back positive at 8 days old.I know I feel better when I chat with...
Hi Sea 2 Sorry to hear about your granddaughter,but glad to hear you now know what is wrong.It sounds like you and your daughter are doing a great job I feel you can never be to cautious,and it's...
Hi Jodi,How are you doing? How is Bailee doing?Conner is doing great! he weighs 12lbs8oz,how much does Bailee weigh now?Conner is a wonderful sleeper he sleeps between4and 8 hours at a time,and then...
Hi Toni Heather here sorry it took me so long to reply life gets hectic sometimes! Thanks for posting it is nice to talk to people who are going through the same thing we are.What mutations do you...
Hi Jodi, How is Bailee doing?I'm sorry to hear she got sick and was at the hospital.What did they do for her to make her better?Did she have to stay in the hospital?How much did it affect her lungs...
Hi Carrie my name is Heather and my son will be 8 weeks old on Friday the Dr's called me when he was 8 days old and told me they believed he had CF.We had no idea we were carriers either.My husband...
Hi Jodi! I haven't heard from you in a while I hope everything is ok.Cloey's test came back negitive for CF although she is a carrier I am so happy for her.Conner is doing well, he goes on Friday for...
We have noticed that he coughs alot more but we have not yet seen any mucus.Conner also sweats quite abit I really have to watch what I dress him in or else he gets heat rash.They put me on...
Hi Congrates on the new grandson! My name is Heather and we found out our 6 week old son has CF 5 weeks ago.He is taking one enzyme with every feeding and they just taught us how to do his chest pt....
They will have to do another sweat test on Cloey if her DNA comes back with two mutations.(lets pray it doesn't)I do Conners chest pt twice a day for twenty minutes.He seems to enjoy it he just lays...
Hi Jodi, How are things going? Cloeys sweat test did not work.They did it two times but could'nt get enough sweat.They say it could be good because cf kids normally are very sweaty.So now we have to...
Hi Jodi, How are you doing? How is Bailee doing? Conner is doing well! I had him for his weight check on Wed. he weighs 9lbs,how much did Bailee weigh this week?Been pretty busy this week getting...
Hi Jodi, how are you doing? I hope are CF team is good too. We have only met with the pulmonary Dr. and the cf nurse coordinator.They also have a dietitian,social worker,and physical therapist. Is...
Hi Jodi how are you doing today? We have not yet gotten to talk or meet any one from our clinic so I am very greatfull to be able to talk with you.All we have had is what the Dr's tell us and what we...
mycfangel my name is Heather and my sons is Conner thanks for replying I know how difficult this all is I feel the same way. ( drained) When did you find out your little girl had cf? We found out...
The doctors have put him on enzymes but we were just wondering how you know if you really need them. The dr's say 85% of all people with cf with the 2 genes need them but how do you know if your not...
I just found out my 4 week old son has cf, I have read so much information in the last week but I would really like to talk to someone who has a baby with cf or who has grown up with it . Thanks...