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Wow! I'm really sorry to hear your daughter took such a turn for the worse so suddenly. Was she ever evaluated for a transplant? I suppose all of the cf related complications she had made her a not-so-good candidate. Sorry again for your loss and I'm glad she passed peacefully. She's certainly...

My daughter wasn't on enzymes until she was 4 due to her mis-diagnosis but OMG she had to eat so much to maintain. I'm talking bigger portions than a human adult. She's doing much better now that she's being treated for CF but I just don't understand why if her new born screening yielded one...

My daughter wasn't on enzymes until she was 4 due to her mis-diagnosis but OMG she had to eat so much to maintain. I'm talking bigger portions than a human adult. She's doing much better now that she's being treated for CF but I just don't understand why if her new born screening yielded one...

Try googling the eflow neb. I came across it the other day and I think its good for everything but Tobi.

Try googling the eflow neb. I came across it the other day and I think its good for everything but Tobi.

My daughter had a true positive and then a false negative on her newborn screening. She was always in the 90 percentile for height and weight but then dropped off shortly before her diagnosis and is now considered to be very pancreatic insufficient. Some people have cf without the g.i. issues...

My daughter had a true positive and then a false negative on her newborn screening. She was always in the 90 percentile for height and weight but then dropped off shortly before her diagnosis and is now considered to be very pancreatic insufficient. Some people have cf without the g.i. issues...

Danika is 4 and gets up in the morning and does albuterol, 30 breaths on the acapella, nebulizes her tobi then takes the flo vent. At night she repeats this process and once a day in the afternoon she vests while nebbing her saline and pulmozyme. When not on tobi she takes albuterol the vests...

Danika is 4 and gets up in the morning and does albuterol, 30 breaths on the acapella, nebulizes her tobi then takes the flo vent. At night she repeats this process and once a day in the afternoon she vests while nebbing her saline and pulmozyme. When not on tobi she takes albuterol the vests...

My daughter is 4 and we let her get away with using the acapella sometimes since she always complains that the vest hurts. We used to have this thing with a hose that you connect to the side of the mouthpiece of the acapella and it lets you know you're exerting the right amount of pressure but...

My daughter is 4 and we let her get away with using the acapella sometimes since she always complains that the vest hurts. We used to have this thing with a hose that you connect to the side of the mouthpiece of the acapella and it lets you know you're exerting the right amount of pressure but...

Those guys are awesome. Their first album was probably the best. I think its called Pipers at the Gates of Dawn which featured original guitarist syd barret. Everything after that was really good too. I don't think they ever really had a bad album except some are definitely more memorable than...

Those guys are awesome. Their first album was probably the best. I think its called Pipers at the Gates of Dawn which featured original guitarist syd barret. Everything after that was really good too. I don't think they ever really had a bad album except some are definitely more memorable than...

My girlfriend's sister moved up here from California after our daughter's diagnosis to be closer to her and help us out but she's been getting really bored lately. She decided to start learning Japanese and she's also taking a tight rope walking class. If you have an old piano in your house...

My girlfriend's sister moved up here from California after our daughter's diagnosis to be closer to her and help us out but she's been getting really bored lately. She decided to start learning Japanese and she's also taking a tight rope walking class. If you have an old piano in your house...

Have you spoken with your doctors about this substantial drop in PFT's. Maybe its time for another tune-up. It also sounds like there's alot of stress in your life. Maybe an exercise plan or doing transcendental meditation could help get you back on the road to recovering some of that lung...

Have you spoken with your doctors about this substantial drop in PFT's. Maybe its time for another tune-up. It also sounds like there's alot of stress in your life. Maybe an exercise plan or doing transcendental meditation could help get you back on the road to recovering some of that lung...

I think they will as long as the benefit out weighs the risks. I know for a fact that the University of Washington children's hospital here in Seattle does specialize in pediatric transplants on kids even younger than your friend. However I'm not sure if all centers perform them so she may have...

I think they will as long as the benefit out weighs the risks. I know for a fact that the University of Washington children's hospital here in Seattle does specialize in pediatric transplants on kids even younger than your friend. However I'm not sure if all centers perform them so she may have...

Bill, You say that you're allergic to tobi. Do you ever actually culture pseudomonas? I'm just curious and I haven't figured out how to PM other members yet.