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Type: Posts; User: grammakaky

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  1. Replies
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    What was her job there. She didn't do anything...

    What was her job there. She didn't do anything to help our cause. The ones they were worried about voted it through.
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    7,464

    Thank you for having the link for the live...

    Thank you for having the link for the live blogging. I followed it all the way and right now I so full of Emotion. Happiness, crying. Thank you, Thank you.
    the FDA advisory panel votes to...
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    2,466

    So sad to hear this. Prayers for all of them

    So sad to hear this. Prayers for all of them
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    2,091

    Forwarded the infor to my facebook CF group. ...

    Forwarded the infor to my facebook CF group. They are getting their letters together too.
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    2,091

    Sending my letter right now, TODAY!!!!!

    Sending my letter right now, TODAY!!!!!
  6. My two granddaughters have cf and we have been...

    My two granddaughters have cf and we have been diffusing for acouple of years now. We use a Himalayan salt lamp with a built in diffuser. She also sells the different oils. My granddaughters are...
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    I do remember right off if pancreatic...

    I do remember right off if pancreatic insufficient; stools were almost a neon green color. Very noticeable if not on enzymes!
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    Our doctor said the same thing. His hopes are in...

    Our doctor said the same thing. His hopes are in the vx-661 and he told us that a year ago. I just hope the vx-661 doesn't get a delay if the vx-809 isn't promising.
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    Im so sorry to read this. I remember reading...

    Im so sorry to read this. I remember reading Jane's posts also about her sons. This is so tragic. My thoughts and prayers are with all of them.
  10. Hi everyone, Im a grandmother to 2 girls with cf...

    Hi everyone, Im a grandmother to 2 girls with cf and I've been using essential oils for little over a year. We use a salt lamp with a built in diffuser for buring essential oils. This is the website...
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    I would love a Grandparents section. I'm a...

    I would love a Grandparents section. I'm a grandparent of 2 granddaughters ( ages 3 & 5). My daughter is a single mother and we are her main support team. It's hard at times; esp now, my oldest...
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    Hypertonic Saline in 2 year old

    Both granddaughters (3yrs & 19mths) only do HTS twice a day. They tolerate it well. They were not put on Pulmozyme.
  13. Replies
    80
    Views
    8,914

    Hypertonic Saline in 2 year old

    Both granddaughters (3yrs & 19mths) only do HTS twice a day. They tolerate it well. They were not put on Pulmozyme.
  14. Replies
    80
    Views
    8,914

    Hypertonic Saline in 2 year old

    Both granddaughters (3yrs & 19mths) only do HTS twice a day.   They tolerate it well.  They were not put on Pulmozyme. 
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    Enzymes & Feeding Tube

    It's funny cause my daughter took a small video on her cellphone of her taking her enzymes. CHOP asked her to send them a copy of it and they were amazed. It's funny she would take them over a...
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    4,246

    Enzymes & Feeding Tube

    It's funny cause my daughter took a small video on her cellphone of her taking her enzymes. CHOP asked her to send them a copy of it and they were amazed. It's funny she would take them over a...
  17. Replies
    32
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    4,246

    Enzymes & Feeding Tube

    It's funny cause my daughter took a small video on her cellphone of her taking her enzymes. CHOP asked her to send them a copy of it and they were amazed.  It's funny she would take them over a...
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    4,246

    Enzymes & Feeding Tube

    Why don't you just try putting the enzyme in his mouth whole, followed by the second.  He is already use to eating food and he will think its something different.  My daughter went through...
  19. Replies
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    4,246

    Enzymes & Feeding Tube

    Why don't you just try putting the enzyme in his mouth whole, followed by the second. He is already use to eating food and he will think its something different. My daughter went through the same...
  20. Replies
    32
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    4,246

    Enzymes & Feeding Tube

    Why don't you just try putting the enzyme in his mouth whole, followed by the second. He is already use to eating food and he will think its something different. My daughter went through the same...
  21. Replies
    80
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    8,914

    Hypertonic Saline in 2 year old

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>grammakaky</b></i>

    Hi my two granddaughters are on HTS since they are 6 months old and have tolerated it well.&nbsp; They inhale...
  22. Replies
    80
    Views
    8,914

    Hypertonic Saline in 2 year old

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>grammakaky</b></i>

    Hi my two granddaughters are on HTS since they are 6 months old and have tolerated it well. They inhale Albuteral...
  23. Replies
    80
    Views
    8,914

    Hypertonic Saline in 2 year old

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>grammakaky</b></i>

    Hi my two granddaughters are on HTS since they are 6 months old and have tolerated it well. They inhale Albuteral...
  24. Replies
    80
    Views
    8,914

    Hypertonic Saline in 2 year old

    Hi my two granddaughters are on HTS since they are 6 months old and have tolerated it well. They inhale Albuteral first to clear airways then 12 min of HTS. It makes them cough and really helps. CHOP...
  25. Replies
    80
    Views
    8,914

    Hypertonic Saline in 2 year old

    Hi my two granddaughters are on HTS since they are 6 months old and have tolerated it well.&nbsp; They inhale Albuteral first to clear airways then 12 min of HTS.&nbsp; It makes them cough and really...
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