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hi amo..thankyou so much for you wonderful subtle reply lol how are you? my daughter is not so bad..she had a few falls today..same as any other but she is amazing...
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AMO
I am sorry  darling daughter falls.
I have   fallennn quiet a few times. Thankful I have not had injuries that were very bad... extensive brusing, and did something to my knee once, but no broken bones.
My torso is quiet unstable ( truncal ataxia)  aand just sitting I tend   to fall over, so armrests really help.
I hope she did not hurt herself.

I am glad to see you here and    hope tooday will be   a  good day.
Take care , Amo
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hi hope your doing well..i have made my daughter rest all weekend,,hard telling an 18 yr old to stay in but she has and she has done nothing but sleep..she must of needed it..she is ok..he knees are a bit sore and her hands but she is on the mend..bring on another week...her legs just give in on her but hopefully after her being well rested she will be ok..hope u feeling better too x
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AMO
Thank you for well   wishes. Muchh appreciated.

Hoow has DD (darling daughter:) adjusted too  the c-pap machine? Is it   givinng her better sleep so far? She must need the sleep.

And YES  kiddos have minds of their own! LOL
My balance/walking/fatigue is such I use   a wheel chair. It  might limit some things , but it does allow me getting out.

As for her Ataxia, has DD hadd  brain MRI? And does she show atrophy   of her cerebellum?
I hope you and she have a good rest of your day.
Be well and SAFE! Amo
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hi there,thankyou for your replies,means so much ye know,...i hope your feeling well hun..x the thing im going thru with maria right now is driving me crazy..she has been in and out of hospital since she was a baby,and now she is 18 she has transitioned from alderhey to aintree hospital..liverpool,and all my worst fears have come true because she is not getting the same help.advice and treatment now..,maria is a strong independant young little lady and im so proud of her..but on the other hand!..we were given the CPAP trial for a week,so after that they could look at the results and determine what air flow was nessecary..Maria point blank refused it when we came home for the trial.and not only being stubborn.she was so worked up and so upset and frightened,.she sobbed her heart out to me,that was the first night..i cautiously and lovingly tried to persuade an convince her for the rest of the week that it could and would help but no matter what i said did not help in any way..i took the equipment bk the week later an was on my own handing it in..i ended up sobbing in front of the nurses coz i dont know what is going to happen now...although they even said you cant force her..i know that..but where do we go from here,...we are still waiting for an appointment now.. sorry for going on,,guess im just telling you the story so far..its so frustrating..my daughter is so beautiful...she deserves answers..and she deserves to know about her illness..xxxx sorry for ranting,.just been one of those days..hope your ok today amo x
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AMO
Lisa,
Parenting is  never dull!! I understan d your concern and frustration.
Maria  being     jusst turned adult age  iis so tough to adjust in how  wwe as parent handle  the     situations that arise.

I know our health care systems are vastly different in some aspects. It iis hard when your child transitions to the next sttep care even when they do not have health   issues (and rare illness to boot!) I hope     her new set of doctors are communicating with the ones she has left.

I am sorry the returning the CPAP was so hard on you. I think thhe nurse should have recognized the situation and have you keep with the understanding that Maria may be open to using it at    some poin t.


There is no need to apologize for how you are feeling... even though our forum may noot be very active, this is a safe place to vent !
Have a good day and hope things are more calm for you.
Amo



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you are very right..our forum isnt very active...and it is a shame,as ther must be so many parents out there feeling the same but dont know these sites are available..,i think its a case of keep posting...and keep supporting..
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