Search results

  1. Z

    PTC124

    I was on the CFF drug pipeline page and I was curious if anyone knows anything, or is trying this drug in phase II right now. If I understand it, it sounds like it would really help those with nonsense mutations (which is what my daughter has). I was curious if anyone knew anything about it...
  2. Z

    Missouri Center

    We also go to Children's. My daughter sees Dr. Cannon and we have been very happy with her. She also is very aggressive, but it has eradicated PA for my daughter so I appreciate that! I would definitely recommend going there. They are just so positive at Children's too. I remember my first...
  3. Z

    Missouri Center

    We also go to Children's. My daughter sees Dr. Cannon and we have been very happy with her. She also is very aggressive, but it has eradicated PA for my daughter so I appreciate that! I would definitely recommend going there. They are just so positive at Children's too. I remember my first...
  4. Z

    Missouri Center

    We also go to Children's. My daughter sees Dr. Cannon and we have been very happy with her. She also is very aggressive, but it has eradicated PA for my daughter so I appreciate that! I would definitely recommend going there. They are just so positive at Children's too. I remember my first...
  5. Z

    blood in runny nose

    Hi all, My almost 14 month old has started to get a runny nose AGAIN and this time there is some blood in it. We do not have a humidifier in our home, and the air can get pretty dry. My husband actually said his nose has had a little blood in it too. I was just curious if any of your kids...
  6. Z

    blood in runny nose

    Hi all, My almost 14 month old has started to get a runny nose AGAIN and this time there is some blood in it. We do not have a humidifier in our home, and the air can get pretty dry. My husband actually said his nose has had a little blood in it too. I was just curious if any of your kids...
  7. Z

    blood in runny nose

    Hi all, My almost 14 month old has started to get a runny nose AGAIN and this time there is some blood in it. We do not have a humidifier in our home, and the air can get pretty dry. My husband actually said his nose has had a little blood in it too. I was just curious if any of your kids...
  8. Z

    Trouble feeding toddler

    Thanks for all the ideas. I guess what has me the most stressed is that my daughter goes to daycare on Fridays only and they want her to be eating tablefood in that room all the time. If it wasn't for the daycare I would think we are making decent progress. They have suggested just putting...
  9. Z

    Trouble feeding toddler

    Thanks for all the ideas. I guess what has me the most stressed is that my daughter goes to daycare on Fridays only and they want her to be eating tablefood in that room all the time. If it wasn't for the daycare I would think we are making decent progress. They have suggested just putting...
  10. Z

    Trouble feeding toddler

    Thanks for all the ideas. I guess what has me the most stressed is that my daughter goes to daycare on Fridays only and they want her to be eating tablefood in that room all the time. If it wasn't for the daycare I would think we are making decent progress. They have suggested just putting...
  11. Z

    Trouble feeding toddler

    Hello, Does anyone have any advice for switching a toddler to table food and a sippy cup? My daughter is almost 14 months and we are still struggling with it. I think the main problem is that so many people I know have said they just took the bottle and baby food away and their child learned...
  12. Z

    Trouble feeding toddler

    Hello, Does anyone have any advice for switching a toddler to table food and a sippy cup? My daughter is almost 14 months and we are still struggling with it. I think the main problem is that so many people I know have said they just took the bottle and baby food away and their child learned...
  13. Z

    Trouble feeding toddler

    Hello, Does anyone have any advice for switching a toddler to table food and a sippy cup? My daughter is almost 14 months and we are still struggling with it. I think the main problem is that so many people I know have said they just took the bottle and baby food away and their child learned...
  14. Z

    Ashton

    I'll be thinking of you guys. My little Kate was born about a week before Ashton and I have been following your story. Good luck Monday! Zoe mom to Kate with CF
  15. Z

    Ashton

    I'll be thinking of you guys. My little Kate was born about a week before Ashton and I have been following your story. Good luck Monday! Zoe mom to Kate with CF
  16. Z

    Ashton

    I'll be thinking of you guys. My little Kate was born about a week before Ashton and I have been following your story. Good luck Monday! Zoe mom to Kate with CF
  17. Z

    Pregnant - was also posted in "Newly Diagnosed"

    Pregnant - was also posted in "Newly Diagnosed Hi Shannon, I have a one year old with CF. On our big ultrasound they also noticed a bright bowel. They tried to do an amnio, but didn't get enough of a fluid sample. My OB had me see a perinatologist throughout the rest of the pregnancy to...
  18. Z

    Pregnant - was also posted in "Newly Diagnosed"

    Pregnant - was also posted in "Newly Diagnosed Hi Shannon, I have a one year old with CF. On our big ultrasound they also noticed a bright bowel. They tried to do an amnio, but didn't get enough of a fluid sample. My OB had me see a perinatologist throughout the rest of the pregnancy to...
  19. Z

    Pregnant - was also posted in "Newly Diagnosed"

    Pregnant - was also posted in "Newly Diagnosed Hi Shannon, I have a one year old with CF. On our big ultrasound they also noticed a bright bowel. They tried to do an amnio, but didn't get enough of a fluid sample. My OB had me see a perinatologist throughout the rest of the pregnancy to...
  20. Z

    Cheyenne is being admitted

    Hi Debbie- my daughter was admitted at 6 months for PA. I cried the entire day before and the day we got there. She ended up staying a week and it really wasn't that bad. Our children's hospital had a bed in the room for me, and we just brought in tons of toys and movies and basically made...
Top