Monday, May 9, 2011

no dessert

No dessert...I mean, I have made some but this blog post isn't about that
not really

maybe it is

I haven't written it in my head yet so I am not sure

I didn't want to make a blog about Finn and the struggles we face but maybe it is good to do that...maybe it is a release that needs to happen.  I don't know.  This is all new territory for me.  It's like running in the dark, with scissors, through the woods, with some sort of monster chasing me.

Finn has epilepsy.
Finn has autism

My beautiful baby, they now believe (although "now" is the word of the moment with the doctors) they now believe she was most likely seizing since birth...small seizures not readily noticeable but there...lurking like some sort of monster only in the broad daylight.  These seizures caused small electrical storms in her brain.  Although small might be a relative term there.  They know these give her migraine headaches.

Anyone have migraines???  I do and I can't imagine my tiny baby having debilitating headaches already...shouldn't she have to have her own children before those start??? :)

She has epilepsy.  It's official.  They had been using "suspected epilepsy disorder" but now it is official.  Epilepsy.

I threw myself into epilepsy advocacy.  Finding a cure, joining support groups.  I could do this.  We could do this.  We can give her her medication, time her seizures, track them on charts, bring them to appointments, travel 5 1/2 hours one way to see her neurologists, do blood work.  I could do this.  It was hard but I was determined.  I read books.  Lots of books.  I googled any and everything to do with epilepsy.  I was informed, knew the right phrases, spoke with authority.  I am a good advocate.

Finn has autism.
It's official.  The initial testing was done by the behaviorist who decided more testing was necessary.  More testing was done by the speech therapist and a behavioral psychologist.  There is no denying it.  There is no "maybe it's just some behaviors."  It's a full-blown, 5 alarm diagnosis.  The recommendation is 40 hours a week of intensive therapy.  40 hours.  Keep in mind she is 23 months old.  She still takes naps people.  Not to mention the nearest therapist in the therapy they suggest is 75 miles one-way away.

We have therapy for epilepsy and therapy for autism.  When will I get to SEE Finn?  When does she get to be a baby.  She still is a baby.  My baby in fact.


she is brilliant

She can concentrate on her blocks for hours...stacking and stacking.  She knows how to turn the TV off and on and change the settings to make sure her movie is in and playing.  I can't get that right all the time yet.  She can unlock our front door!!!

She likes to lick things is her newest fascination.  She licks her fingers, the dog, her food before eating, her fingers (again...she chews on them too) the windows, strangers.  She licks.  Her little soft tongue is always tasting.  I think she can sense people's moods by the taste they give off.  Of course, that is just my theory. :)

She likes to read and will eagerly pull books and climb into laps for a read.  She likes marshmallows and chips and her newest interest is Sommies (Zombies...ask Cori.)  She is fascinated in figuring out how everything works and would gladly take apart anything she can get her hands on and then put it back together.

Our house is filled with sensory toys and materials...bubbles and weighted everything...Velcro attached to crazy places, chewies and pull toys.  Boxes filled with packing peanuts and pringles cans with dried beans.  Baggies with oozy gel and noise, musical toys.  Finn loves music.  She sings all her words.  She can keep beat to the music and will stop everything to listen to Jack's Big Music Show.

We have sign language DVDs to help her try to lessen the frustration that causes her to chew her arms and beat her head.

We keep to schedules and introduce things slowly to try to minimize the melt-downs.
We play outside but only at grassy parks...the paved ones are too risky with seizures.
We often as we can.  Finn can swim....I am convinced she is headed for the Olympics.

Nick and Dylan are so patient.  More patient than I ever was with my younger brothers.  They dote on her and work with her and she learns more from them than any of the therapists.

I wish I could do more for them...the guilt consumes me...all the time and therapy and expense for Finn leaves little for them.  Like the leftovers.  That isn't fair.  I don't know how to change to correct it.  How can I give 100% to everyone????

I hear that is a regular feeling...that guilt.
I hate it.

I guess there was no dessert in this one

although I hear those Starbucks coconut mochas are pretty tasty!!!  :)