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  • My Christmas wish for you and your family is to live in Peace Harmony Laughter and Love and know how Beautiful You shine so bright with your Love and Light! I just want you know how much you mean to me ... we have never met in person, but you are known to me and stay in my heart. I feel we have been friends forever ....
    Wondering what other PALS do for excessive saliva...I feel like a toddler cutting teeth! Also how do you sleep through the night??? I have sevier stiffness and pain. Sleeping pills are not working! Meds DR prescribed to dry mouth not working! Suggestions appreciated! Thanks!
    Jim does not have a PEG uyet, but the oil melts very easily at about 80 degress anad can be mixed with other liquid foods. I don't think it would be a big problem. Go easy though, start with 1 tbsp and increase gradually.
    Judy, I posted my reply about the bed on my message page instead of yours. so sorry.
    Hi Judith,
    Had a wonderful mothers day. I hope you did as well. Been living in a whirlwind lately. Went to Barrows yesterday and was tested for the Diaphragm Pacer. I qualified! Now we are waiting for insurance approval. Exciting things are happening at Barrows and I feel very blessed to be receiving treatment from the best in the country. If all goes as planned I will be the second ALS patient to receive the DPS in Arizona. Right now I am the only candidate. Feeling a little delighted and hopeful. Will check in when I have details to share. Please Pray that the insurance approval is a smooth process. I hope you are well. How are you doing? When do you have your next clinic visit?
    Battling the adjustment to a hospitalbed, cough from sinus drainage(the cough assist is helping), learning to use the Bipap for daytime naps orTV watching, and a miserable persistant case of Candida related to the Ceftriaxone Trial. I have an appointment with the Infectious disease doc next week. I'm seriously considering dropping out of the Trial.
    It was great Judith! I did take a spill but didn't hurt myself. Are you going to do anything special this summer?
    Glad you got the peg place Judith Ann! I am now totally dependent on the peg, and it is keeping me alive.
    Hope everything heals up quickly...be sure to clean the wound every day. That keeps infection away.
    love you
    Glad to hear that the Peg placement went well. Hope you continue to heal nicely and tolerate the feedings well.
    Do you have any breathing problems or difficulty swallowing? Ask your doc about it. You shouldn't need a peg til you have symptoms.
    love you
    That's a good idea, I may try it. No, I have never had to clean the tube as long as you give a full syringe full of water after you put anything down it. when are you having the peg placed? Good luck!
    I am thinking about trying coconut oil, but dont know if it will clog my pegtube. Im not eating much by mouth these days. Any ideas?
    I don't have a peg. I would mix it with your formula after microwaving it. No more than 5 seconds. I use organic extra virgin coconut oil made by Nutiva...ordered from Amazon.

    Please tell me how you put coconut oil in the peg? I fear it will clog. what Im thinking is to microwave it and mix it with my formula. Tell me how you do it? What kind do you use? Where do you get it?
    Thanks for the info!
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