Chester Worwa

--- On Fr
Just wondering.  Does Mary's AFO bend?


Chester Worwa

--- On Fri, 7/24/09, JOHN RUNER <[log in to unmask]> wrote:

> From: JOHN RUNER <[log in to unmask]>
> Subject: Upadate on Mary Runer
> To: [log in to unmask]
> Date: Friday, July 24, 2009, 5:57 AM
>  Hello,
> 
> 
> 
> My daughter Mary 9 has recently been confirmed by sleep
> deprived EEG to have
> Epilepsy on top of her  CP..it is due to
> excessive activity in her left hemisphere and seems to be
> triggered by
> fatigue.  The neurologist is not medicating her yet as
> she has only had
> one confirmed seizure ( he is having us call if we even
> suspect another seizure
> and will start her on meds at that time, he is also having
> her come in every
> couple of months for tracking).   Mary also
> had a second pulmonary
> function test and it confirmed a twenty percent reduction
> in lung volume
> capacity compared to her height and weight.  Her
> pulmonologist said to
> keep her away from the larger cities as much as possible as
> she is very
> sensitive to air pollution and we live at high elevation
> above the smog. At
> this point Mary does not require oxygen but she did until
> around two and a
> half.  Mary has her right ankle afo and actually loves
> it!  She is
> not tripping her self now.   We also
> recently started a special needs
> trust for her.  I sat and cried about the epilepsy as
> I used to have grand
> mal seizures and still shake on occasion.  I took
> Phenobarbital and it was
> terrible, apparently if she starts meds now they are much
> better. 
> 
> 
> 
> Thanks,
> 
> 
> 
> John Runer dad to Mary RH, cognitive delays, Epilepsy
> 
> 
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