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Type: Posts; User: emacsurak

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    So- We got 24 inch extension kits. This give...

    So-
    We got 24 inch extension kits. This give you a little more length (only 12 inch comes with the button from the hospital). They have Mini One but are using the Mickey Extension kits. So we get...
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    Sorry- Totally read your post as 7 months and...

    Sorry-
    Totally read your post as 7 months and not 7 years... skip the whole jammie foot crib thing :)
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    We are going through the same thing. After...

    We are going through the same thing. After MONTHS of trying with ng feeds- our twin girls had g tubes placed two weeks ago. (they will be one in two weeks) It was a really hard decision and one...
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    One other thing. We are switching to Nutren...

    One other thing. We are switching to Nutren Junior because it is a supplement to feeding and not their primary food. It will only be given through the gtube overnight. For this reason, it is...
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    Our twins are on Pertzye. Talk with your...

    Our twins are on Pertzye. Talk with your dietician- but for their g-tube night feeds we give them double their normal dose of Pertzye at the start. We crush Viokace in the overnight bags to help...
  6. Thread: CF and salt

    by emacsurak
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    Because of the salt loss... watch for dehydration...

    Because of the salt loss... watch for dehydration in the summer time. Our docs told us that is how they first diagnosed CF as "something" It was really hot in New York and they had a bunch of kids...
  7. Getting the cost of Mini One AMT coverered

    We have twin girls with CF. They are 11 months old and after battling with ng feeds for the last 10 months- they had Mini One tubes placed last week. Going into the surgery- the doctors told us...
  8. Getting the cost of Mini One AMT coverered

    We have twin girls with CF. They are 11 months old and after battling with ng feeds for the last 10 months- they had Mini One tubes placed last week. Going into the surgery- the doctors told us...
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    Getting the cost of Mini One AMT coverered

    We have twin girls with CF. They are 11 months old and after battling with ng feeds for the last 10 months- they had Mini One tubes placed last week. Going into the surgery- the doctors told us...
  10. Overnight feeds of infants leading to SUPER WET mornings

    Hey all-
    I wasn't sure where to post this... thought "families" was my best bet. I have 9 month old twins who are on overnight feeds through an ng (soon to be g tube). Despite all efforts they wet...
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    Mic-key/Mini versus G Tube?

    Thank you all for your support concerning the my girls possible g-tubes. I was wondering if anyone had any thoughts on Mic-key vs Mini vs traditional G Tube. My girls are army scooting and spending...
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    Thanks! I will post and see if there is someone...

    Thanks! I will post and see if there is someone in a similar situation in the Family section- thank you for the offer of pen pal-ing. I may take you up on that!

    The girls are both homozygouys...
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    Thanks.

    It is soooo reassuring to hear that there are other parents out there who are feeling the same way I do. I feel like everything the clinic gives me to read is pro-g tube because that is what they...
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    Where do you turn...

    My twins are 8 months old now. They were diagnosed at 4 weeks. It was a total shock- I had a screen when pregnant with my first and it was negative- guess it was a false negative. I think that we...
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    They are at the 10th percentile unadjusted for...

    They are at the 10th percentile unadjusted for weight- BUT at the 50%ile for the height to weight ratio. IE they are short but proportionally fat enough for their small size. They are following a...
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    When to consider a G Tube

    I have twin daughters with cystic fibrosis. They were born 6 weeks premature- and were twins. So they started out life small. They have also been taking Creon since 4 weeks old. They just stopped...
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