Sunday, February 21, 2016

Typical Sunday

Let me give you a glimpse into my life. Today, I:

Worked until 1:30 am.
Woke up at 8:30 and got my family ready for church
Church at 10:30
Lunch at Wendy's
Helped lead 4-H meetings at 12:45 and 1:30
Home for nap
Up at 4
Family party at 5:30
Home at 9
Showers for kids still awake
4-H paperwork
Watch tv show with my husband 
Bed at 12:45

Someday I'll wonder how we made it through these days.

Tuesday, February 9, 2016

And done. For today

So if you aren't familiar with the test, an EEG basically measures the brain's electrical activity. They glue 26 electrodes to your head and watch while you sleep, see a strobe light, and blow a pinwheel. To increase the likelihood of seeing seizure activity, you must only get four hours of sleep the night before the test. 

The pinwheel exercise sure looked like it triggered some activity during the EEG but we won't know for sure until Friday. Either way, we are most likely looking at a medication change. 

And I'm happy. Happy to know we might be able to make life a little easier for Lainie, easier than the last year has been.

Sleeping beauty

EEG part 2

Neurologist appointment was good. The doctor listened to my concerns looked not just at her physical symptoms today but also behaviors we've seen at home. They even added her recent IEP assessment to her medical record. They think we will need to change meds but will wait for the EEG results to decide.

And so we wait for 1230.

EEG day, part 1

Early morning selfie

Double tea for mom the driver 

Kindle in the car to stay awake for the 200 mile trip.

Now for shopping, you know, just to stay awake of course.

Monday, February 8, 2016

The face of epilepsy


Tonight's face of epilepsy. Lainie has to stay awake until midnight. Tomorrow we travel to KC for her annual neurologist appointment. And, because things at school haven't been great, she is due for an EEG to determine if her type of seizures has changed. So far, her only documented seizures have been tonic-clinic seizures, but her EEG has always shown "generalized seizure activity" in her brain. We will go see if she has added absentee seizures to the list.

And so tonight she must stay awake until midnight. At 4 am I will wake her up and keep her awake until her 1230 EEG. They want her tired so they can capture seizure activity. It's a painless test but still a pain. 

But I will tell you that this test prep is a lot easier now that she is nine and not two, like she was the first time we did this. She is reading Harry Potter and the Half Blood Prince, hoping to finish it by midnight. Then tomorrow I'm hoping she can watch the movie as I drive or while we wait in Children's, to help her stay awake.

I love this girl with all my heart. I am praying for no more challenges for her. She has enough as it is. And so do we.

But tonight, it's all about a late night reading. Not too bad of a prescription.