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    #16
    I think it's the transitioning period that's the problem. The 500 calories was supposed to supplement his food intake. Instead he's eating less food and now needs more calories. I'm supposed to be doing it gradually but I think it needs to be quicker before he loses more weight.
    when i can think of something profound i will update this.

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      #17
      Well I have 1000ml a day at a rate of 400mph which I completely tolerate and I am putting on weight. Only water down the throat and only when needed. Experiment with some things. Oh and the feed lasts 2 and a half hours. That's a decent film isn't it? πŸ‘πŸ˜x
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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        #18
        I’m eating less & less now so I just have an extra Fortisip when needed, also found a cake & custard very satisfying when I don’t fancy anything else x
        Janette x

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          #19
          He likes Cookies, cake and chocolate. Sweet stuff he's really keen.
          when i can think of something profound i will update this.

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            #20
            Denial is a common theme sadly. ☹️x
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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              #21
              denise When does Stephen have the pump feed - I wonder if he isn't interested in eating because he's not particularly hungry?

              Or maybe run the pump overnight if he currently gets it during the day? xx
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              ​

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                #22
                I usually start him about 9.30 and finishes about 5pm depending on breaks about lunch time. I'd love to do it overnight but his bed always looks like something from the exorsist so I think he'd pull it out. He doesn't know yet I'm going to add another half feed this afternoon.
                he's just eaten bacon, eggs and new potatoes a cup of tea and finished off the cookies. ☺
                when i can think of something profound i will update this.

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                  #23
                  I'm not surprised you're finding it hard Denise. It sounds like you're doing really well with feeding and making meals. It must be really hard there with little support.

                  When I was teaching if the children had done something admirable I used to give them a sticker and say.. go sit on the comfy chair and feel proud of yourself. I think you should do the same although unfortunately I can't run to a sticker !

                  Hugs to you both,
                  Love Debbie x

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                    #24
                    Hi deb
                    my daughter is a teacher I should ask her to send me some. Not sure what she uses. Perhaps a little star for being a good lad. He's on his next 250 calories in his backpack on the balcony. He's sitting in the sun. Peace at last! ☺
                    when i can think of something profound i will update this.

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                      #25
                      I'm getting syringes with blunt ends to put butterscotch syrup into my pump feeds and any spirit with a strong and distinctive flavour, I like Irish malt whisky. The flavour comes in burp. Beats the taste of plain feed believe me. πŸ˜„x
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                        #26
                        I agree totally with Lynda and Neil, every thing via tube now apart from an odd cup of tea, took a lot of pressure of trying to make sure I had enough calories per day plus although I could swallow small amounts that does cause such a big risk of aspirating, coughed and choked several times, so gave in, it’s just not worth the risk

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                          #27
                          Pride comes before choking in our world.πŸ˜‰πŸ˜„x
                          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                            #28
                            We're getting there. Forgot to recharge the battery. Then when I should have taken a 2nd satchet with us I forgot. Though Stephen has gone from 72 to 80 things (me I can only think in stones) then I'm getting it right it's a bit haphazard at the moment. Pizza buns and chocolate filled the gap. My weight has also gone up due to my encouraging nature. Let him see what I'm eating then he will join in! I'm not going to share the details it's too scary. 😁
                            when i can think of something profound i will update this.

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                              #29
                              Hi Sarah,

                              Overnight food is a bad idea. Your body is shut down and doesn't want food. Because we are generally inactive, we need less food.
                              Copyright Graham

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                                #30
                                Stephen was encouraged to do overnight feeding. It didn't seem right to me. Thanks graham you confirmed my feelings.
                                when i can think of something profound i will update this.

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