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  1. R

    G-Tube Advantage

    Here is a great recipe to make and actually drink it - just to prove to someone that you are not that much of a lab machine. It tastes great and has lots of calories - it is gluten free and dairy free. Almond Gainer 1 cup of almond milk 1/4 cup almond butter 2tbls Rice protein 2 tbls honey...
  2. R

    G-Tube Advantage

    Here is a great recipe to make and actually drink it - just to prove to someone that you are not that much of a lab machine. It tastes great and has lots of calories - it is gluten free and dairy free. Almond Gainer 1 cup of almond milk 1/4 cup almond butter 2tbls Rice protein 2 tbls honey...
  3. R

    G-Tube Advantage

    I also do eggs and spinach and sunflower oil. Basically anything you can think of you can mix it and bolus it. Here is the process. 1. Slow juice the veggies needed ( ie brussel sprouts or spinach). 2. Mix in good blender ( ninja or vita mixer) 3. To save some hassle i filter the formula through...
  4. R

    G-Tube Advantage

    I also do eggs and spinach and sunflower oil. Basically anything you can think of you can mix it and bolus it. Here is the process. 1. Slow juice the veggies needed ( ie brussel sprouts or spinach). 2. Mix in good blender ( ninja or vita mixer) 3. To save some hassle i filter the formula through...
  5. R

    G-Tube Advantage

    Sharon: I use the same formula via g-tube night feedings. I just make it more watery to avoid clogging. I also run it through a strainer to filter out clumps. I dont use eggs or salmon for the night feeds due to food safety. I also add ice if you want to make sure it stays cool. But it can...
  6. R

    G-Tube Advantage

    Sharon: I use the same formula via g-tube night feedings. I just make it more watery to avoid clogging. I also run it through a strainer to filter out clumps. I dont use eggs or salmon for the night feeds due to food safety. I also add ice if you want to make sure it stays cool. But it can...
  7. R

    Clarification

    Any updates on NON G551 taking VX-770? My doc wrote a script by insurance said no. Doc said they wont or cant send any letters of need etc.
  8. R

    Clarification

    Any updates on NON G551 taking VX-770? My doc wrote a script by insurance said no. Doc said they wont or cant send any letters of need etc.
  9. R

    Anybody try a dairy-free, gluten-free, sugar free diet?

    Gluten Free is the way to be. Being Gf has completly improved my health. I too had to find answers through a health practitioner. She said I might have an allergy to wheat. So I kept researching and looking for tests that stated so. IGE/ IGA antibodies, which were elevated. Then I had a genetic...
  10. R

    Anybody try a dairy-free, gluten-free, sugar free diet?

    Gluten Free is the way to be. Being Gf has completly improved my health. I too had to find answers through a health practitioner. She said I might have an allergy to wheat. So I kept researching and looking for tests that stated so. IGE/ IGA antibodies, which were elevated. Then I had a genetic...
  11. R

    Rallying the troops.... we need to get together on this

    Yeah we need to be proactive on this. It is so hard to get on a trial and if given a placebo is a risk. I think if the drugs are reasonably safe then we should be on them. How many years have we waited for something. How many clinical trials have we been in over the years, too many. It is time...
  12. R

    Rallying the troops.... we need to get together on this

    Yeah we need to be proactive on this. It is so hard to get on a trial and if given a placebo is a risk. I think if the drugs are reasonably safe then we should be on them. How many years have we waited for something. How many clinical trials have we been in over the years, too many. It is time...
  13. R

    Pneumonia Vaccine Shown to Actually Increase Bacterial Infections It Is Supposed to Prevent

    Pneumonia Vaccine Shown to Actually Increase Bacterial Infections It Is Supposed to Prevent Pneumonia Vaccine Shown to Actually Increase Bacterial Infections It Is Supposed to Prevent <h5></h5> <div class="article-date"> <h5>May 22 2012 <span class="gray">|<span...
  14. R

    Pneumonia Vaccine Shown to Actually Increase Bacterial Infections It Is Supposed to Prevent

    Pneumonia Vaccine Shown to Actually Increase Bacterial Infections It Is Supposed to Prevent Pneumonia Vaccine Shown to Actually Increase Bacterial Infections It Is Supposed to Prevent <h5></h5> <div class="article-date"> <h5>May 22 2012 <span class="gray">|<span...
  15. R

    Daughter Exposed to TONS of dry dirt in the air camping

    Looking back at what I did as a kid I cringe, surprised I made it through. If she is only exposed once in awhile she should be ok. I also rinse with saline and do a breather of just saline 3% to keep things moist and moving. You could always say it is too dusty for you and take the heat off, I...
  16. R

    Daughter Exposed to TONS of dry dirt in the air camping

    Looking back at what I did as a kid I cringe, surprised I made it through. If she is only exposed once in awhile she should be ok. I also rinse with saline and do a breather of just saline 3% to keep things moist and moving. You could always say it is too dusty for you and take the heat off, I...
  17. R

    VX 770 / VX 809 / VX 661

    That would bring it out closer than VX661
  18. R

    SSI and Special Needs Trust

    ssi is usually so low it is crazy and you have to be basically destitute. Do you have any work credits for the last few years? You can find out and might be in ok shape for ssdi or at least in a few years. If you have a job then you pay disability and ss tax into ssdi and would be a better...
  19. R

    SSI and Special Needs Trust

    ssi is usually so low it is crazy and you have to be basically destitute. Do you have any work credits for the last few years? You can find out and might be in ok shape for ssdi or at least in a few years. If you have a job then you pay disability and ss tax into ssdi and would be a better...
  20. R

    SSI and Special Needs Trust

    I would try to work a few years and earn enough credits to get ssdi. I learned that the hard way. You need 4 units x 5 years or so , per year of income and each unit is about $1100 in income. NOt sure how that will play out. Please double check with SS and Beth at the CFF It is best to plan a...
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