Another Goose Egg

Today's seizure scoreboard reads ZERO!  Thank you Lord!  Thank you for blessing us with another day without having to hear her head hit the floor or the hard, plastic toy she's playing with.  A sight and sound that breaks a piece of my heart every time.  Or see Lucy drop her head and shake her body in imitation of what "Abby says".

Abby has only had one seizure in the past five days, down from 50 a day two weeks ago with no change in meds since mid-August.  Excited to talk to her neurologist today to see if he still wants to increase her Keppra dosage.  Or if he'll do what he did last week when the number was slowly decreasing.  Half heartedly acknowledge, then quickly dismiss, the fascinating possibility that it could be our treatments with Dr. Frymann that are helping her.  The world of neurology and cranial osteopathy don't exactly live in harmony.  Aside from the drop in seizures, she just seems more active, connected, eager to move.  She even cries when Lucy steals a toy from her.  Sounds like a small thing, but it's big in her world.  I'll have to keep myself from attacking Dr. Frymann with love tomorrow at our appointment.  I want to hug her to pieces and kiss her feet for the changes I see in my baby since we started seeing her a month ago.  And I guess you never know what is actually helping, but it's definitely not hurting.

Her seizures started two weeks after we learned she had a 20p13 (chromosome) deletion.   August 15.  I knew epilepsy had it's place with this disorder, but her EEG looked good so I thought we were on the good side of that.  We had at least escaped that.  During those two weeks, I tried my hardest to keep from worrying about the future and let her smiling face tell me that it was okay.  Not easy.  Okay, impossible most of the time.  Then the seizures started which made it particularly hard to be thankful for "today" when today I was watching her jerk and shake 40-50 times a day.  Not knowing what was happening inside that head of hers.  Getting a "we're not sure" to every question I had for her doctors.  Hearing that medication will not likely help her because of her chromosome disorder, but try this toxic drug with serious side effects and we'll see.  Not their fault, just hard to swallow.

I know better than to do the happy dance in celebration of never seeing another seizure.  But I am soooo happy, so I'll dance in celebration of TODAY!  And I'll hear Lucy say "Mom, no.  Don't dance please".  Really?  She's two and already embarrassed of my mad dance skills.  And, it's 'mommy' to you.