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I haven't had a compassionate reassignment, but my daughter was registered in EFMP for our last military move. They called ahead to make sure all of her specialists were available before we moved. Is your new CF team from an accredited CF center? I know Tricare has rules for how far they can...

Sterilizer bags I use Madella sterilizer bags that were designed to sterilize bottles and breast pumps when we travel.

For disposible nebs I recommend Hudson RCI UP-DRAFT 11 OPTI-NEB. They cost about $65 for 50 nebs. They can be used the same time as an Acapella Choice. You just use the Acapella in the back neb in the middle and Acapella's mouth peice. The nebs each come with their own tubing. I take out...

I E-mailed you again. Let me know if you get the E-mail. If it helps Becca is still in diagnostic limbo and started CF vitamins, vit D and has been on scandishakes as long as I can remember maybe a decade, but she is always on supplements they just change as new ones are invented. Hopefully...

scrapper1264 my daughter's takes Xopenex and I was wondering if the generic has a counter on the inhaler or do use the nebulized version? Financially switching to generic sounds good.

I 2nd the opinion on always call the CF team about any antibiotics. Peds tend to use a much lower antibiotic dose for the weight/age/bacterial infection then our CF teams (daughter's and mine) recommend. I also have a concern that some of our anitbiotic resistence (bacteria no longer respond...

I think Becca is trying to set the record for diagnositic limbo 13 years and counting. I sent you an E-mail. Thanks for keeping in touch.

My understanding is that is the school accepts any federal funds, then they are required to comply with a 504 plan. So if they accept funds, then try for a 504 plan. That is so crazy. Great advocating mom.

I just returned from Florida with my vest and this time I had a skin it on the vest that I chose the pictures for myself. I have pictures of my children, a family picture including myself, husband, and kids as well as CF awareness ribbons. The security guard said these are cute pictures and I...

My daughter now 13 had a similar issue with her gymnastics routine. At the time her FEV1 was 50%, but at clinic her pulsox was around 97%. I did buy a portible pulsox machine and her O2 stayed 95%. For my daughter albuterol and Xopenex did not help in inhaler or neb form. Duoneb which is...

I flew with my vest Tuesday and I am currently driving to the airport today. My advice is to ensure you book a flight on a larger flight. Avoid express planes because their over head bins are too small. I bring a clear plastic bag so if needed I can take the vest compressor out of the bag and...

For a clinical trial option we went through the diagnosing Primary Ciliary Dyskinesia (another mucus clearance disorder) clinical trial to get to UNC and then the PCD testing was negative, but this doctor agreed that mucus clearance treatment was necessary. With treatment my daughter is doing...

Have you looked into clinical trials? I used to think clinical trials were just for treatment, but I learned this past year that there are clinical trials regarding testing as well. There is a mucus clearance consortium which consists of a group of hospitals that have money to focus research...

Thanks so much for the details this information was very helpful.

Thanks for checking in with us. We are doing well. How is your daughter? I sent you a PM on 10-29 and on 10-31, so I am not sure why they aren't going through.

Does anyone know about generators? I am probably going to lose power in this storm and want to get a generator before the winter storms hit. I see prices from $200 all the way to $4000. So what type do I need to run a refrigerator, freezer, space heater for one room, vest (2 if possible) and...

For homework while vesting my daughter uses her IPAD to type papers, create flashcards, and uses an app called notability which allows her to take a picture of any dito and then create text boxes and type in her answers so penmanship is not an issue. She is also a gymnast and in 8th grade. The...

For homework while vesting my daughter uses her IPAD to type papers, create flashcards, and uses an app called notability which allows her to take a picture of any dito and then create text boxes and type in her answers so penmanship is not an issue. She is also a gymnast and in 8th grade. The...

Have you consulted with a lactation consultant? I was in you difficult situation 13 years ago and stopped breast feeding so my daughter could be on high calorie specialty formula. 2 years later my second daughter no CF was a premmie and failureto thrive the best lactation consultant at the...

Thanks for the preyers. My daughter and I are both being care for by CF teams. After 4 pulmonologists and 3 states she has the most wonderful doctor. With CF treatment her FEV1 went from 55% to 110% in a year and now it is hovering at 90%. I am very fortunate to learn that I have I have CF...