Hi Terri,
I tried posting this earlier but it wouldn't show up so I'm trying
again.
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 about the fact that 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.