Hi Terri,
I hope that Janet's seizures stop and Janet starts feeling better
really soon. All of this must be very hard for you, Janet and the
rest of the family. I am happy that you and your little one are
getting some help from your rest and relaxation time out in the sun.
Have you noticed whether Janet's eyes look like they are working
together any better when she wears her glasses? For me that was an
immediately noticable improvement. In my case and Lu's, wearing the
filters every waking minute is a necessity. If we take them off,
even to clean them, we immediately start having problems and it
takes a long time for our systems to calm down again. Even when the
filters just fade a little too much over time, I start having really
bad problems. Some days I seem to be hyper sensitive and now that I
have my darker filters, I switch to those whenever I need them, even
if it is dark or I am inside. A lot of the improvement is
progressive, the longer I wear the filters consistently, the more my
system calms down and the better I feel. I realize that Janet has
wounds that have to heal from her recent surgery that probably make
wearing glasses uncomfortable for her, but since Janet is extremely
light sensitive, whenever the area is healed, you might find more
improvement if you can get her to wear the filters all of the time.
You are right when you say there are too many medical problems and
medicine changes going on right now for you to get a fair assessment
of how well the filters are helping Janet right now, but I sincerely
hope that there will be significant improvement soon.
What is an IEP meeting? I am not familar with the term.
It is amazing that with all you have going on that you had time to
write a book. I have read Marie Killilea's books, Karen, With Love
from Karen and Wren. They are about life with her daughter who was
born with cerebral palsy. They are informative and truely
inspirational. I hope that you can find a publisher, I am sure that
a lot of people would benefit from reading your book.

--- In glimmercoloredfilterglasses@y..., joebandterrib
<no_reply@y...> wrote:
> Hi Everyone,
> Sorry I haven't updated you lately.
> Janet is still in the very slow process of being weaned off of one
of
> her seizure meds.(She's on three) She had a partial seizure
saturday,
> so I kept a really close eye on her all weekend. I watch her
> constantly, because she seems on the brink of having one almost
all
> the time. I'm pretty comfortable with what her pre seizure signs
seem
> to be, to me anyway. It helps knowing what to look for. This will
go
> on until June and if all goes well we will begin weaning her off
> another, leaving her on just the one for long term.
> Her checkup with the neurosurgeon went well. Her shunt is working
> fine and we will do a cat scan for baseline purposes on her next
day
> off from school.
> She has worn her glasses some, but we don't see any drastic relief
> for her. This could be because she is going through so many other
> things. I'm anxious to try them when she is done with all this
> medication adjustment and back to her normal self.
> I'm pretty busy right now. She has her IEP meeting for school next
> week that I'm preparing for. I don't know if I mentioned it , but
> when she was in the hospital this last time I wrote a childrens
book
> about Hydrocephalus. I'm trying to find out how to get it
published.
> This is pretty hard , since I know nothing about that kind of
thing.
> Her surgeons, their nurse and everyone else that reads it just
loves
> it. It's very short and very basic. I was trying to reach the
young
> children and hopefully help them understand a little of whats
> happening to them and not be so afraid.
> Anyway....I'm feeling less panicky lately. I think the great
weather
> we had here about a week ago helped. I got out on my bike with the
> baby quite a bit during the day when Janet was in school. Fresh
air
> and sunshine can work wonders on ones spirits!!
> Stay well everyone,
> Terri