Search results

  1. H

    Rough few days...

    non-rsv bronchiolitis (i think that's what they called it) was what resulted in our first visit to the hospital just about this time last year--before the cf diagnosis. pretty mild case--no oxygen needed. it was what led us to our pulmonologist referral and eventually to the cf dx (when dd was...
  2. H

    Rough few days...

    non-rsv bronchiolitis (i think that's what they called it) was what resulted in our first visit to the hospital just about this time last year--before the cf diagnosis. pretty mild case--no oxygen needed. it was what led us to our pulmonologist referral and eventually to the cf dx (when dd was...
  3. H

    Is there a need?

    I'm toying with the idea of starting a foundation to provide funds to CF families to help with the cost of "extra" activities--program fees for swim team, soccer, gymnastics, dancing, etc--with the idea that these programs provide necessary treatment for those living with CF and they are often...
  4. H

    Is there a need?

    I'm toying with the idea of starting a foundation to provide funds to CF families to help with the cost of "extra" activities--program fees for swim team, soccer, gymnastics, dancing, etc--with the idea that these programs provide necessary treatment for those living with CF and they are often...
  5. H

    Is there a need?

    I'm toying with the idea of starting a foundation to provide funds to CF families to help with the cost of "extra" activities--program fees for swim team, soccer, gymnastics, dancing, etc--with the idea that these programs provide necessary treatment for those living with CF and they are often...
  6. H

    READ ME: a challenge to the board

    My daughter (18 mos) was diagnosed just over 2 months ago. A couple of days after her diagnosis (while checking out the CFF website) I registered for a Great Strides walk scheduled to take place just about a month later (at the end of Nov). Having no idea what to expect, I asked just a couple...
  7. H

    READ ME: a challenge to the board

    My daughter (18 mos) was diagnosed just over 2 months ago. A couple of days after her diagnosis (while checking out the CFF website) I registered for a Great Strides walk scheduled to take place just about a month later (at the end of Nov). Having no idea what to expect, I asked just a couple...
  8. H

    READ ME: a challenge to the board

    My daughter (18 mos) was diagnosed just over 2 months ago. A couple of days after her diagnosis (while checking out the CFF website) I registered for a Great Strides walk scheduled to take place just about a month later (at the end of Nov). Having no idea what to expect, I asked just a couple...
  9. H

    Traveling/flying with CF

    Thanks for sharing. We're flying to Hawaii with our daughter (who will be almost 2) in May . . . a 14 hour trip--yikes!!! Hope you don't mind if I send you a pm before I go for any last minute tips!
  10. H

    Traveling/flying with CF

    Thanks for sharing. We're flying to Hawaii with our daughter (who will be almost 2) in May . . . a 14 hour trip--yikes!!! Hope you don't mind if I send you a pm before I go for any last minute tips!
  11. H

    Traveling/flying with CF

    Thanks for sharing. We're flying to Hawaii with our daughter (who will be almost 2) in May . . . a 14 hour trip--yikes!!! Hope you don't mind if I send you a pm before I go for any last minute tips!
  12. H

    now I'm being told...........

    Hi Katie. I know a lot of people have responded--just wanted to let you know that I also tested negative during my prenatal screening because the screening was the standard panel and I have a mutation that shows up in the expanded panel (not one of the 99% most common mutations). I agree with...
  13. H

    now I'm being told...........

    Hi Katie. I know a lot of people have responded--just wanted to let you know that I also tested negative during my prenatal screening because the screening was the standard panel and I have a mutation that shows up in the expanded panel (not one of the 99% most common mutations). I agree with...
  14. H

    now I'm being told...........

    Hi Katie. I know a lot of people have responded--just wanted to let you know that I also tested negative during my prenatal screening because the screening was the standard panel and I have a mutation that shows up in the expanded panel (not one of the 99% most common mutations). I agree with...
  15. H

    Where to start...?

    Hi. I'm new to all of this, too--just found out about a month ago that my 17 month old daughter has cf. I was screened during pregnancy, and my husband and I have no family history of CF, so this has all come as quite a shock. I now know that the screening isn't for all mutations, and I have...
  16. H

    Where to start...?

    Hi. I'm new to all of this, too--just found out about a month ago that my 17 month old daughter has cf. I was screened during pregnancy, and my husband and I have no family history of CF, so this has all come as quite a shock. I now know that the screening isn't for all mutations, and I have...
  17. H

    Where to start...?

    Hi. I'm new to all of this, too--just found out about a month ago that my 17 month old daughter has cf. I was screened during pregnancy, and my husband and I have no family history of CF, so this has all come as quite a shock. I now know that the screening isn't for all mutations, and I have...
  18. H

    Is there a "best" place to live?

    Is there a we live in de, too <img src="i/expressions/face-icon-small-smile.gif" border="0"> just found out about a month ago that our 17 month old daughter has cf. moved from california before we new about her dx. so glad to be close to such a great care center.
  19. H

    Is there a "best" place to live?

    Is there a we live in de, too <img src="i/expressions/face-icon-small-smile.gif" border="0"> just found out about a month ago that our 17 month old daughter has cf. moved from california before we new about her dx. so glad to be close to such a great care center.
  20. H

    Is there a "best" place to live?

    Is there a we live in de, too <img src="i/expressions/face-icon-small-smile.gif" border="0"> just found out about a month ago that our 17 month old daughter has cf. moved from california before we new about her dx. so glad to be close to such a great care center.
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