wednesday thread *hour by hour*

Discussion in 'Cambridge Weight Plan' started by sumayyah, 30 December 2009 Social URL.

  1. sumayyah

    sumayyah please try again

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    morning everyone, hope your all having a good one

    realised yesterday i only had 2 packs ( whoops ) so today i dont know weather to have yesterdays forgotten pack or to just stick to the usual 3. hmm dicisions dicisions

    i want to go somewhere, do something but i bet im home all day insted :(

    i should crack on with emptying my daughters room, ive given up on waiting on the nhs getting thier act together, theyve been playing pass the buck for over a year about getting her an electric bed and my back is sick of me trying to get her up and over the side of her cot so were getting a cabin bed and my bro in law is going to adapt it with doors on the bed so she will still have large sides to stop her falling out of bed but it will be at a workable hight for me.
    hes also going to build me a floor to cealing wardrobe for her so we will have a good amount of storage for all her equipment and supplies

    only problem is i hate decorating, lol
     
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  3. emmapetty

    emmapetty Going for Goal!

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    Hi Summayah and those who follow,

    Wow sounds like you have been busy - does your little girl not have a hoist? Would be much better on your back. It may be worth speaking with her school about who to contact about getting one.

    I have previously missed a pack accidently before - if I was you I would stick to the usual 3 packs, but if you do start feeling hungry you know that you can have another pack if needed. Play it by ear hun.

    I'll need the hourly thread today. I'm back to it today. Just about to do a warm choc tetra for brekkie :)
    I also have my paracetamol at the ready and water :) If I can get through these next couple of days, the energy i'll regain will be well worth the grotty headaches and hunger pangs!

    Big Hugs x x x
     
  4. sumayyah

    sumayyah please try again

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    morning emma

    well i see youve got your cambridge start kit at hand ( paracetamol and water is a must for me ) so im sure you will be back in the swing of it soon

    we dont hoist, kaya can stand and can walk some so she can normally assist with transfers but when shes asleep and ive got to work on her its lethal as shes so floppy, currently to get her out of bed i have to grab a handful of her pj's and yank her out and to put her back in i lower her as far as i can and then drop her. if she was at waist height on me then i could just ipen the doors and work on her without moving her
    it was agreed she needed a high low electric bed with sides that had opening doors, just no one wants to pay for it
     
  5. emmapetty

    emmapetty Going for Goal!

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    Do you know what I would do? Write to your local MP. I know it sounds ridiculous and extreme but it will be worth it hun. This is completely different, but a relative of mine had her hair set on fire on a bus when she was a teen (now nearly 30) and her hair never grew back, so she was paying for wigs (bloody expensive) the nhs wouldn't pay etc, so I wrote to the local mp for her area. She wrote back asking to meet her, and she and I went along and the lady MP we met was lovely. Some time later (about 2 weeks) a cheque was in the post to redeem the costs of wigs she had paid for previously, and the NHS now pay for her to have a new wig every 6 months.

    Sometimes if you aren't getting the support, the MP is the next place to go to...

    No headache for me as yet. I've had my tetra, my earl grey tea and I'm just about to fill my litre bottle and start slurping :)

    Hugs x x x
     
  6. AlyB

    AlyB Full Member

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    Hi Emma, hows it going?? headache yet? hope not!
    x
     
  7. lancslass53

    lancslass53 Silver Member

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    claire do you not have a social worker, even someone from Barnardos that can help you with all this, if has been said previously that you need one of these beds then get somebody to give their arses a kick, its wrong that you should have to cope like this.
    i work in a special needs school and i also have a son who has Downs syndrome who goes to that school and when ive had a problem the school have been brilliant at least with getting me in touch with somebody who could help.

    hope everybody is having a good day, ive not been anywhere today as its so damn cold and windy so just drinking tons of water, going to have a cuppa to try warm me up a bit now tho :)
     
  8. NumNums

    NumNums Becca

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    Sorry Sumayyah, whats wrong with your daughter? The braces in the picture look alot like I had as a little kid. Please tell me to shh, if I'm poking my nose in too much.
     
  9. sumayyah

    sumayyah please try again

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    its ok num nums. my daughter is an extreme ex prem and as a result she has cerebral palsy, severe learning difficultys, autism, heart and lung disease and is fed via a peg tube overnight

    the things on her legs are AFO'S ( splints ) we recently found out she will require them until shes fully grown

    think i will try the mp as the ot who promised the bed is linked to the school ( as is the physio who suggested just putting her on the floor to sleep )
    will still go ahead with adapting the cabin bed as i know how long it can take to aquire the correct equipment
     
  10. NumNums

    NumNums Becca

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    Awww bless ya both hun. She's got a great mum and looks really happy.

    I had similar splints as I've got arthritis and have since 2yrs old.


    Hope you get her bed sorted hunnie x
     
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