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Old 23 Apr 16, 04:06 PM  
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#41
daytonababe
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Glad to hear she's heading the in the right direction with her recovery :-)
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Old 23 Apr 16, 04:23 PM  
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mouli1
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I hope things continue to improve , this is a horrible misunderstood illness that affects all the family not just the patient

its a long road and I hope you all continue to the help you need
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Old 24 Apr 16, 07:32 PM  
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Had a lovely afternoon at the sealife in the Trafford centre followed by a mooch round the home shops. Think DD really enjoyed it . Hopefully if her improvement continues it can be a more regular occurrence
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Old 24 Apr 16, 08:54 PM  
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Infinity Red
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So pleased your daughter is progressing well, it makes me realise what type of everyday things we take for granted without a second thought. May her recovery continue xx
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Old 24 Apr 16, 08:56 PM  
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daytonababe
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Originally Posted by buryboy View Post
Had a lovely afternoon at the sealife in the Trafford centre followed by a mooch round the home shops. Think DD really enjoyed it . Hopefully if her improvement continues it can be a more regular occurrence
Pleased for you and your family :-)
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Old 24 Apr 16, 09:18 PM  
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Really pleased to read your last two updates. I hope your daughter continues to make progress.
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Old 25 Jun 16, 10:12 AM  
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buryboy
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Just an update on how things are going with my DD

Her weight has steadily increased during the 14 weeks ( gulp) since she was admitted. From a low of 36.6kg ( 5 stones 11) to 46.8kg ( 7 stones 5 )
Naturally we are delighted with this and obviously while there is still a long way to go, she is not at the same medical risk any more
She is now off her wheelchair, and off her pressure mattress, and allowed to go on daily walks , and allowed 4 hours out with us every Saturday and Sunday

On the downside, her mental state is probably even more confused than ever. She now realises she needs to be in the hospital , but is actually afraid to come home ( even during her 4 hours out - we haven't brought her back yet even though there would be time ) . she is afraid of being discharged too soon ( it wouldn't be for months anyway) and having a relapse and having to be re-admitted. But we need to guard against her becoming dependent on the priory long term. She Is struggling more than ever to eat even snacks when she is out with us ( just stares and cries at the cereal bar or whatever) .
She fears falling asleep and never waking up , and is still struggling with social interaction and making decisions.
It looks like she will have to change units when she turns 18 to an adult ward so the thought of that isn't helping, as she has just got used to some of the staff, and they know best how to deal with her. ( why the system means she has to move when it's not in her ( or the taxpayers who are funding her stay ) best interests is beyond me )

My wife has negotiated a day off work during the week to help her cope. We are still planning on going to Salou for our hols without DD but just limiting to a week , as we need the break ( son included ) . My DD still has stopped most of the family seeing her , so we feel we couldn't leave her for 2 weeks.

Here's hoping they manage to get to grips with her mental side, as its torturing us , but we are trying to remain strong
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Old 25 Jun 16, 10:19 AM  
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caj
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You are sounding strong and I have no idea how ...

Prayers for strength, wisdom (for you and staff) and above all for your DD. Tough times.
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Old 25 Jun 16, 10:21 AM  
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parisdisneyfan
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Good to hear about her weight but so sorry to hear of her confusion. I assume she is having counselling? Not had experience of this although my teenage ds has had counselling and meds for anxiety. I can imagine how easy it is for her to get dependent on an inpatient care and hope that the hospital has strategies in place to combat this.

Hope you can enjoy your break and your dd can overcome this awful disease x
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Old 25 Jun 16, 02:47 PM  
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Hugs to you all.

And yes; you and your wife and son are all just as affected and need a little time out.

Best wishes in the future-it's definitely a life long road-however; it can be done.
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