Recent content by mehlingfamily

  1. M

    2585delT

    I know that I have asked this once before. We are still curious about this mutation. There is not much information about it online. We are always curious. Our daughter is 7 years old and has been relatively healthy. She has had a few GI issues. Thank you for any help that we get.
  2. M

    Picky eater and fighting 3 year old

    Our little CFer is 3 1/2 years old. And she is a really picky eater. Currently all she wants to eat is baked potatoes with lots of butter and sour cream. What are your childs favorite foods? I am also looking for fun breakfast and dinner ideas....
  3. M

    G Tube Supportive Belts

    I am looking for a good G Tube supportive belt for my daughter that is 3 years old. Does anyone have a good web site or a medical supply company where I can buy one? Or has your child out grown theirs? We are wrapping my daughter up with a ACE bandage at this time. I would really appericate any...
  4. M

    2585delT

    I have sad news Adaira had colonized Pseudomonas Fluorescens once again. The last time we got that result was for Christmas. So Adaira will be on Cipro, and Tobi for a month every other month. I just got a call from clinic a little while ago today. Looks like Adaira is hitting another milestone...
  5. M

    2585delT

    Jenny I am sorry Adaira does not qualify for Kalydeco as what we have been told by our medical team. But we will be asking at next clinic. Adaira is 2 1/2 years old and she has been pretty tiny most of her life except while I was nursing. It is a struggle to get food down her. And there has been...
  6. M

    2585delT

    Thank you very much. We knew Adaira's mutation were rare but we did not know how rare. Here other mutation is 621+1G>T. And we are still learning about these mutations also. Adaira has been pretty healthy in our really mild winter. Adaira is also pancreatic insufficient, and we do have to give...
  7. M

    2585delT

    Our daughter has 2585delT as her second CF mutation. And we have not been able to find any information on her mutation except what her doctor has given us. Does anyone else have 2585delT as one of their CF Mutations.
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