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Hi ,

As a 19 year old Karlee goes to bed around 9:00. She actually gets up pretty

well around 6:00. However, it doesn't seem to make a lot of difference. It's

like you said - working overtime to hear and balance are fatiguing.

RE: absent semi-circular canals

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Aubrie is also very fatigued. We don't know for sure about her semicircular

canals. But I do know her balance is off, her muscle tone is weak, etc. We

think those motor issues contribute to her fatigue, but so do her hearing

and vision. It takes a lot of effort to attend to everything when your

senses are compromised.

I'm sort of encouraged to know that Karlee still has a respite room. Aubrie

does - and I am comforted to know that it is possible to continue it on

indefinitely. We also encourage lots of eating - never mind any school

rules about snacks!

How early does Karlee have to go to bed? Aubrie still goes to bed at 7:30

or 8 in order to get up at 6am.

Michele W

Aubrie's mom

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