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Blended Diet at School - is school feeding her?

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  • čas přidán 3. 10. 2021
  • Now that Elin has a Mic-Key button, is school feeding her? Can they give blended diet at school? Elin is a child with a feeding tube in school and currently mum and dad give her school lunch every day due to there not being adequate provisions for paediatric tube feeding in school setting. We have done a blended diet risk assessment so what happens next?
    I'm a special needs mum vlogger in the UK with two daughters, one of whom is severely disabled. Elin is a girl with quadriplegic cerebral palsy, she has a feeding tube, is a wheelchair user and as she can't use the toilet independently she is in a nappy / diaper.
    Apart from cerebral palsy, Elin has complex medical needs and seizure disorder. She has tonic clonic, or grand mal seizures, partial focal seizures and absence seizures. She is on multiple medications every day, for her spastic muscles, for her reflux disorder and for her epilepsy. Elin is on a blended diet, which we give her through her feeding tube, and I share tips, how to and recipes.
    On this channel I share our day to day life, our morning, feeding, medication and bedtime routines, feeding techniques, how Elin communicates, etc. I also showcase the relationship between Elin and her sister Alice, and how they play and interact with each other.
    Elin’s medical procedures playlist: bit.ly/2HhKFsE
    Tips and tricks playlist: bit.ly/2ugfoy1
    Come and join us on other social media platforms:
    Instagram: / parentxp
    Twitter: / parentxp
    Facebook: / parentxp

Komentáře • 28

  • @dinahakim7114
    @dinahakim7114 Před 11 měsíci +2

    Ch, here in the states, we have some thing called the Americans with disabilities act. It’s a law she would fall perfectly under this act. I also have some disabilities though not as severe asELUN which by the way, I absolutely adore her. She’s such a sweetheart. I am legally blind individuals with a seeing eye dog I guess that’s what you see in the UK. We say here in the states guide dog, but I would fall under the Americans with disabilities act, so would. Rlin you just sometimes got to keep on fighting. Good luck. I absolutely think she’s such a precious girl.

  • @rhondaphillips7471
    @rhondaphillips7471 Před rokem +1

    I can tell her legs have gotten longer, 0ver all Elin looks so much better and stronger,So nice to her growing and thriving

  • @brendalevesque6384
    @brendalevesque6384 Před 2 lety +1

    I was thinking how well Elin was looking. All your hard work cooking amending her food is really paying off.

    • @ParentXP
      @ParentXP  Před 2 lety +1

      It really is paying off, she's doing ever so well.

  • @alternativeprovisioneducat8876

    I'm in Worcestershire, I'm not sure the protocol in Worcestershire or the west Midlands. I'm totally for blended diets. My father has cancer and forti sip actually makes him throw up. Blending soup and meals help as he can still drink normally at the moment. Stay safe xxx

    • @ParentXP
      @ParentXP  Před 2 lety

      I hope you sneak in your father's favourite bevvy at least once 😉

  • @sarahpreston1478
    @sarahpreston1478 Před 2 lety

    Hi I am just catching up with your vlogs (had a rough few months) and wanted to say how well Elin looks, the surgery has made a huge difference and I can't believe how much she has grown. So glad it has all been worth it and I am hoping you get the policy sorted for school asap. xx

    • @ParentXP
      @ParentXP  Před 2 lety +1

      Hi Sarah, hope the rest of the year runs a bit smoother for you. Remember to give yourself some grace and see how amazing you are.

  • @sonja9813
    @sonja9813 Před 8 dny

    Elin is such a beautiful girl, she looks just like you.

  • @patriciamcfadden869
    @patriciamcfadden869 Před 2 lety +1

    She has beautiful hair!! I could watch you braid all day! She has definitely grown!

    • @ParentXP
      @ParentXP  Před 2 lety

      Ha, it takes all day to braid that hair 😂
      Little Rapunzel!

  • @marieked
    @marieked Před 2 lety +1

    That’s so odd bc in in the USA and Canada we use a blended diet with PEGs all the time, they even make “formula” that is all food based. They don’t encourage it for a jeujonostomy though bc the small intestine doesn’t break it down as easily, though some people have done it anyway. I’m a peds nurse but I also have a GJ tube (AMT GJet button)

    • @ParentXP
      @ParentXP  Před 2 lety +3

      Oh, I agree it's odd. I mean, I get the comfort of formula because you can calculate exactly what goes in (if not what stays down) but surely every health care professional ought to know the benefits of actual food over chemical stuff.

    • @jessicasevigny1206
      @jessicasevigny1206 Před 2 lety

      @@ParentXP Could be their para professionals aren’t comfortable with it. Or make an offer that respite care nurse would be administrating it.

    • @ParentXP
      @ParentXP  Před 2 lety

      I think it is because there is no professional in our borough that has been officially trained, as it's a borough where this hasn't been rolled out. I suggested they let me and dad train them 🤷🏼‍♀️

  • @rebeccapruitt9263
    @rebeccapruitt9263 Před 2 lety +1

    Elin your so awesome and beautiful just like your mom love you both

  • @lauralie9658
    @lauralie9658 Před 2 lety

    I can tell her legs have gotten longer. Over all Elin looks so much better and stronger. So nice to see her growing and thriving. It has to be harder on your back for transfers. Do you have a lift and Elin will be growing thru her wheelchairs.... So good to see her grow. God bless!

    • @ParentXP
      @ParentXP  Před 2 lety +1

      She's definitely putting an increasing pressure on my body handling her but I'm delighted she's growing

  • @rhondaphillips7471
    @rhondaphillips7471 Před rokem

    I am just catching up with up your. viols ( had a rough few months) and wanted to say few well Elin looks,

  • @bencaldecott6583
    @bencaldecott6583 Před 2 lety

    ❤️

  • @cerealfibre6938
    @cerealfibre6938 Před 2 lety

    Glad Elin has a blend diet.😊😊😊😊❤❤❤❤

    • @ParentXP
      @ParentXP  Před 2 lety

      It's been so good for her!

  • @leahthompson3737
    @leahthompson3737 Před 2 lety

    Hello. Leah

  • @maddielangdell6496
    @maddielangdell6496 Před 2 lety

    It must be so frustrating when it’s literally just feeding a child but it’s just one of those things that has a massive list of things that you need to do but at lest at some point they will be able to feed her

    • @ParentXP
      @ParentXP  Před 2 lety

      We will get there. I spoke with Elin's social worker today and she will try to add her voice to this too.

    • @maddielangdell6496
      @maddielangdell6496 Před 2 lety

      @@ParentXP that’s good