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floating

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Reply with quote  #51 
yep we had the bible reader too who quoted lots too!!!

Yes Bolus and NG together at the moment
D complaining she is hungry and wants to eat...........o no you don't!! ploy to get NG off ASAP 

She was upset this morning and wanted to die but this tied in with a bolus feed
When I got tere this afternoon she was in very good form. Think NG giving her a break from fighting nasty voice for little while.....well till bolus shots go in

MHA assessor was there today to extend but she was calm about it

Overall good day sotired

Hope your day is going okay....and D is getting nutrition
Think of you each day

hug xxx

mumto2uk, deenl and ookoo thanks......yes she is in a safer place and enjoying wheelchair trips to hospital cafe twice a day for s spin x

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Torie

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Reply with quote  #52 
Floating, I can't tell you how happy it makes me to read positive news from your end!!! It just makes my day to hear a good report about your d!!

I hope you're able to sleep a little better now. Heaven knows you deserve that.

You're a rock star and hero mum - an inspiration to us all.

Keep swimming. 

Hugs,

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
floating

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Reply with quote  #53 
Thanks Torie

Hopefully weight gain in tomorrows weigh in...........we need to get above this present 35kg if we are successful with transfer application to make travelling safe

Yes I am less anxious as she has 2 medical consultants now who are reviewing her daily plus psychiatrist etc
They are minding her very carefully

xx

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mdmama

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Reply with quote  #54 
Floating, I'm a mother who reads the board regularly but doesn't post often-- but I have been following your threads and listening to your radio interviews online and want to add my voice as yet another who is astounded and inspired by your determination and boundless love for your D. I'm hoping fervently for only continued improvement for her, and I'm so glad she is under medical care right now. 
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D diagnosed with AN November 2015 , the week she turned 12. Gaining slowly but steadily, fingers crossed...
floating

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Reply with quote  #55 
Thank you mdmama

For kind comments
we have been going around in circles a long time fighting for even one professional with ED experience or trained to see D but Ireland is way behind.........hopefully this changes in near future....

xxx

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K63

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Reply with quote  #56 
Hi Floating, great to read your post that the nutrition is going in and it will help to heal . Keep the photos on your d phone just in case you need them. Hope you are getting some time for yourself now that you know d is getting nutrition in you must be beyond exhausted. Think of ye so often .
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Daughter started restricting in February 2014, tried re feeding at home hospital admission 4 1/2 months weight restored started restricting post discharge, back on meal plan full supervision weight restored april 2016. Starting to hand back responsibility for meals it's scary. 
Hebrides

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Reply with quote  #57 
Dear Floating, I'm so glad to read these positive posts from you - and so glad that your d's physical health is getting the attention she deserves on the medical ward - at least for now. You have done amazing things to get to this point - I hope you have a bit more peace of mind for the moment, and that you can manage to sleep a little better and rest, ready for the inevitable challenges ahead...

Sending hugs, as always, and thinking of you every day.

xx

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Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
mjkz

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Reply with quote  #58 
What is it with sitters?  My daughter had one from Jamaica who gave her a really "great" recipe for cooking chicken feet and she came home with a voodoo doll.  She had another who did nothing but play video game and "helped" her eat the trays of food.  Do they not screen these people?[confused]
mumto3

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Reply with quote  #59 
Hugs for you and your daughter!  And sending strength for both of you.
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worried mom
Bottle

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Reply with quote  #60 
Thinking of you all Floating.
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Bottle
D2 RAN as part of Pervasive Refusal Syndrome with a history of not walking for a year and being non verbal for a short while too. Considered to be Aspergers by everyone that has worked with her and by us but still awaiting a diagnosis that'll help us access support services she needs.
D1 recovered RAN and D3 doing pretty well considering the mayhem around here!
floating

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Reply with quote  #61 
Thanks for messages mean a lot
Daughter has gain 0.5kg in 4 days........hopefully this stays put and no loss......should not happen on NG & Bolus hopefully
Still on one to one special

We are awaiting funding news, hoping it is positive news soon, please God
She is certainly calmer on NG feed but wants to go back to meal plan but was not gaining
She has never refused food over last 5 weeks in hospital just loopholes keeping it in that tummy!!

Blood pressure slightly low but otherwise ok

xxx

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sk8r31

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Reply with quote  #62 
Glad to hear that d is gaining, & calmer.  Sending warmest wishes for continued gain, & stabilized health...and of course, that a clear way forward with a transfer to an ED unit comes soon.

Hope you are taking the best possible care of yourself as well...rest as much as possible, eat as well as possible...you've been an amazing support and advocate for your d.  Self-care at this point needs to be a priority.

Sending hugs,
sk8r31

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It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
iHateED

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Reply with quote  #63 
Great to hear about the weight gain .... may it long continue.  Sending prayers and hugs to you to keep moving forward.  Please rest and take care of yourself as best you can.
K63

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Reply with quote  #64 
Hi Floating ,great to hear news on weight gain hope this keeps going . Hope you taking time to rest up now that nutrition is going in .
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Daughter started restricting in February 2014, tried re feeding at home hospital admission 4 1/2 months weight restored started restricting post discharge, back on meal plan full supervision weight restored april 2016. Starting to hand back responsibility for meals it's scary. 
Torie

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Reply with quote  #65 
Hi Floating - I've been thinking about you and your d (of course) ... hoping that you have been able to sleep a little better and that things continue to look more positive with your d's treatment. Such a long, tough journey for you both.

Hugs,

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
deenl

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Reply with quote  #66 
Hi floating,

I have my fingers crossed for funding and continued medical progress.

Warm wishes,
D

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2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
floating

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Reply with quote  #67 
well after my family and ppl on here, media and losing all our privacy the psycho signed the treatment abroad scheme (TAS) form 10 days ago
I collected it and registered by post to make sure it was safe

It takes about 15 days for reply

Daughter trying really hard to gain to be stable to fly and gained 1.7kg in 8 days on NG

All the psycho had to do was post in a medical report

YES YOU GUESSED HE HASN'T

The TAS office wrote to him 8 days ago to ask as cannot proceeed without it and then 2 days ago but no joy
psycho has been at the hospital everyday this week so is at work

I emailed him 6 days ago to request he sends the letter ASAP

I phoned his collaege today and she spoke with him and he is denying receiving any letters and will do it if TAS email him the letter/form

Lady at TAS said he had to of received letters??? she asked him to fax them

I have emailed him 4 times today, blow him,,,,,,,,,,,,grrr but still not done

We had our hopes up, D asks everyday if she is going yet...........she is allowing NG just so she can get out of where she is and be transferred. I cannot tell her psycho is messing again.,,,,,,,,,,

Does this hell never improve

Sorry rant over xx

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Torie

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Reply with quote  #68 
Oh good grief. I wonder if the TAS lady can deal with him directly? I'd say this is unbelievable, but, sadly it seems to be par for the course of how your d is treated. Crazy. Sure hope someone can get the psycho to do his paperwork. Yikes. Their ongoing incompetence leaves me breathless.

Hang in there! You are doing hero's work, with fab results seen in the weight gain! Thank heavens your d has you on her side.

Hugs,

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
iHateED

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Reply with quote  #69 
Thinking of you as always floating.   So soooo glad to hear that your D is gaining weight.  May the healing continue and may the darn psycho just do what he needs to do to get the transfer.   Why the heck is he doing this to you and your D?  Maybe TAS can contact someone above psycho?   Continuing my prayers for both of you. 
deenl

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Reply with quote  #70 
Quote:
Originally Posted by Torie
I wonder if the TAS lady can deal with him directly?


Hi floating,

I'm with Torie on this. Explain to the TAS woman and give her all his contact details.
Or get her to email the form to you and print and put it directly in his hands yourself.
Or get it faxed to doctor's office at an agreed time and you be there too

And ask him to give you the form so you can express post it back to them. At least you will know it has been done.

Wishing you strength and the patience of a saint,
D

__________________
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
floating

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Posts: 877
Reply with quote  #71 
Thank you..........I am going through a very difficult time at present

Mainly due to psycho not sending medical letter to treatment abroad scheme and delaying process by 2 weeks

Life must get easier!!!

xx

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iHateED

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Reply with quote  #72 
Darn psycho!  Anything we can do to help?  Thinking of your and your D everyday.  Please take care of yourself as best you can. 
Hebrides

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Reply with quote  #73 
Floating - just to say you are much in my thoughts as you wait for the psycho to get a move on... So stressful for you and d (and the rest of your family too). Hoping tomorrow brings good news...

Hugs

xx

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Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
pipes2406

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Reply with quote  #74 
Hi Floating - just catching up on your post and so sorry to hear the psycho is giving you such stress. Sending hugs; I think of you and your d often. You are such an inspiration. Hope you have good news today - go give that man hell! Xx
Sotired

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Reply with quote  #75 
Hi floating-I know you aren't doing so well from what you posted but sadly my only suggestion is to go and bug the head honcho of the hospital.tell him that you are all set to sue the hospital if those papers aren't signed and sent today. (The only thing that moves a bully is force sadly.)
I think your pysch should meet the gastro doc at our hospital-they would get on like a house on fire...
I'm sorry hon.i know what it's like to be completely debilitated from stress.can you take a lawyer or a human rights representative with you?
We have been dealing with some horrible crap here so I'm just catching up with your news.
Can the person who helped you before help again?
Why is the pysch obsessed with your d?its creepy.if he wasn't he would have signed those papers.theres no logical explanation so obsession is all I'm left to think.
Anyway,I'm sure I'm not suggesting anything new-I just know how paperwork gets 'ahem-lost' in the system.printed out pages can't If they are presented to him.personally in front of a witness.could you ask for copies of the letters sent to be forwarded to you,then you print them out and take them as proof of the delay tactics?high lighting the date sent.those and some kind of lawyer might get you over this latest holdup.
Hugs from across the ocean,

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