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Date: | Fri, 24 Jul 2009 12:41:48 -0700 |
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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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