pictures retrieved!

Oh phew!  I finally got the pictures off of the camera.

Man, our blog is depressing!

There.  That's better.

-or different at least.

24 hr EEG

When the DR said she would need a 24 hr EEG, I thought she had misspoke.  Surely she just meant over night.  Nope.

On June 4th Brynn will be hooked up to an EEG machine for 24 hours.  She will have a 12 ft radius.  They said we might want to bring some toys.  Heaven help us.

Please give me your ideas on how to entertain/exhaust a toddler with the above constraints.

ps sorry there are no pictures.  The laptop no longer speaks to my camera.

Me, my baby, and a lot of guesswork

Today we had an appointment with an Epileptologist.  She was great.  We learned a lot of things that I could share, but one thing in particular is burning me up.  She said that we should not start Brynn on the Trileptal because she suspects that Brynn's seizures might be linked to a sodium channel mutation, and Trileptal interferes with the sodium mechanism. 

If we had followed the treatment plan given to us by Children's Hospital we could have made Brynn's seizures worse. 

This totally unhinges me.  My child's brain is in the balance here.  Nothing is more precious.  What the fuck are these doctor's doing?  I am making huge decisions about her brain based on internet searches, and gut feelings.  I want to scream out loud. 

And what if the epileptologist is wrong? 

We are going to get a third opinion.  We hope that two of the three doctors will agree.  In the mean time we are going to get Brynn some gene testing, and an all night EEG.  These two tests will be at Swedish 1st hill, not Children's.