Cystic Fibrosis Forum (EXP)

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  1. F

    Liliana is struggling.... :(

    It has been a while since I have posted on here. Life has gotten busy and we seem to be running in every which way. Liliana is struggling with 2 lung infections. But we are pushing through each day. She is also losing weight... :( Please keep us in your prayers. Here is an updated picture of...
  2. F

    ??Pseudomonas??

    Hi Everyone! How is everyone doing? It's been a while since I have been on here and I miss chatting with you all. But I wanted to see if I could get some feedback on Pseudomonas. Liliana has cultured Pseudomonas for the first time. We got the call yesterday. They are starting her on Tobi for 28...
  3. F

    ??Pseudomonas??

    Hi Everyone! How is everyone doing? It's been a while since I have been on here and I miss chatting with you all. But I wanted to see if I could get some feedback on Pseudomonas. Liliana has cultured Pseudomonas for the first time. We got the call yesterday. They are starting her on Tobi for 28...
  4. F

    ??Pseudomonas??

    Hi Everyone! How is everyone doing? It's been a while since I have been on here and I miss chatting with you all. But I wanted to see if I could get some feedback on Pseudomonas. Liliana has cultured Pseudomonas for the first time. We got the call yesterday. They are starting her on Tobi for 28...
  5. F

    ??Pseudomonas??

    Hi Everyone! How is everyone doing? It's been a while since I have been on here and I miss chatting with you all. But I wanted to see if I could get some feedback on Pseudomonas. Liliana has cultured Pseudomonas for the first time. We got the call yesterday. They are starting her on Tobi for 28...
  6. F

    ??Pseudomonas??

    Hi Everyone! How is everyone doing? It's been a while since I have been on here and I miss chatting with you all. But I wanted to see if I could get some feedback on Pseudomonas. Liliana has cultured Pseudomonas for the first time. We got the call yesterday. They are starting her on Tobi for 28...
  7. F

    Nemours and Blue Cross Blue Shield

    I live in Saint Augustine, Fl and also have BCBS PPO and am having the same plm. I got a letter on Friday from Nemours saying that they haven't come to an agreement and as of Jan 1st my ins is an out of network ins. I am looking into CMS and Nemours Funding. We applyed for Medicaid after I got...
  8. F

    Nemours and Blue Cross Blue Shield

    I live in Saint Augustine, Fl and also have BCBS PPO and am having the same plm. I got a letter on Friday from Nemours saying that they haven't come to an agreement and as of Jan 1st my ins is an out of network ins. I am looking into CMS and Nemours Funding. We applyed for Medicaid after I got...
  9. F

    Nemours and Blue Cross Blue Shield

    I live in Saint Augustine, Fl and also have BCBS PPO and am having the same plm. I got a letter on Friday from Nemours saying that they haven't come to an agreement and as of Jan 1st my ins is an out of network ins. I am looking into CMS and Nemours Funding. We applyed for Medicaid after I got...
  10. F

    Christmas

    Merry Christmas and a Happy New Year to everyone!!!
  11. F

    Christmas

    Merry Christmas and a Happy New Year to everyone!!!
  12. F

    Christmas

    Merry Christmas and a Happy New Year to everyone!!!
  13. F

    Girl with CF on The View

    Yes I was in tears too. The whole getting her wish to come true thing got to me. I just picked Liliana up, cried and held her close as we danced. Every parent should get to see their child's wish come true.
  14. F

    Girl with CF on The View

    Yes I was in tears too. The whole getting her wish to come true thing got to me. I just picked Liliana up, cried and held her close as we danced. Every parent should get to see their child's wish come true.
  15. F

    Girl with CF on The View

    Yes I was in tears too. The whole getting her wish to come true thing got to me. I just picked Liliana up, cried and held her close as we danced. Every parent should get to see their child's wish come true.
  16. F

    Sweat Test mix up

    I take Liliana to Nemours in jacksonville and I haven't had a plm with them. They did her sweat test and everything. We haven't gotten the dna test done because they are having a hard time getting enough blood from her. Have you taked to anyone there about it? Are they the ones who did the testing?
  17. F

    Sweat Test mix up

    I take Liliana to Nemours in jacksonville and I haven't had a plm with them. They did her sweat test and everything. We haven't gotten the dna test done because they are having a hard time getting enough blood from her. Have you taked to anyone there about it? Are they the ones who did the testing?
  18. F

    Sweat Test mix up

    I take Liliana to Nemours in jacksonville and I haven't had a plm with them. They did her sweat test and everything. We haven't gotten the dna test done because they are having a hard time getting enough blood from her. Have you taked to anyone there about it? Are they the ones who did the testing?
  19. F

    CF Family Day

    We had our CF day on Sat. Wish I could have gone, would have been my first one. But we didnt get to go because my hubby had to work and we dont leave Liliana with any sitters as of yet. SO I missed out. Maybe next year. Jen
  20. F

    CF Family Day

    We had our CF day on Sat. Wish I could have gone, would have been my first one. But we didnt get to go because my hubby had to work and we dont leave Liliana with any sitters as of yet. SO I missed out. Maybe next year. Jen
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