Didn't see THAT coming…EEG here we come.

Although I just recently posted an update, we've had a hectic few weeks.  We were lucky enough to have the construction on the upper two levels of the house completed and our belongings brought back from storage.  Everything from the garage and basement had to remain in storage until those two rooms can be finished.  We're hoping that will start next week!

Reagan had her first appointment with Dr. Lavenstein last week and it went very well and he is very pleased with her progress.  I shared the discussion we had with Dr. Pearl about the medication plan to gain his perspective and was surprised by his response.  As a reminder, originally Dr. Pearl recommended trying to bring Reagan off her meds when she turned five.  The at our last appointment he was adamantly that we should wait until she's eight.  Dr. Lavenstein recommended an EEG to verify how her brain activity looks and make a decision from there.  They were able to get us into an appointment today and it was nice not having a lot of time to think about it.  Although it is a very straight forward test that is done in the neurology office, it still brings back a lot of memories and emotions for us.

We were asked to prevent Reagan from sleeping more than 4 hours last night and ensure she doesn't sleep on the way to the appointment.  Given the appointment was at 4:30pm that was rather challenging, but we accomplished it.  They connected about 20 electrodes to her head and chest and as soon as the lights went out so was she!  The goal is to see as much natural brain activity as possible and not be distracted by activity caused by movement (including eye movement).  They let her sleep for about 20 minutes collecting both the EEG data and the video component.  After about 20 minutes they asked us to wake her up and have her keep her eyes open…but kept the lights off and we weren't allowed to shake her or tickle her since movement can affect the data being collected.  Who knew THAT would be so hard!  Once we had about 10 minutes of her awake, they started a series of light strobes that flashed about 10 times and then it went dark for a few seconds and then another series of strobes done more quickly.

Overall Reagan did a great job and took it all in stride.  We even had her smiling by the end!  We talked to her about what to expect last night and showed her pictures from her last EEG in April 2012.  It was two years ago this month that she started having her seizures again after being seizure free for over 20 months.  She was exhausted when we left and after giving her a bath to get the yucky glue residue out of her hair she was very excited about being able to go to bed.  The EEG tech and neurologist will review the results and call us in the next 5-7 days.  We're praying the results look good and she is able to start weaning off the medication.  And if not, we'll carry on with the current plan and increase her medication (to keep up with weight gain) in the next few months.

Next week we have an opthalmology appointment for Cole and then physiology and the pediatrician for Reagan in May.

After only four hours of sleep last night with a wake up call by Cole in the middle for water, it's time for me to go to bed!  I'm definitely ready for some rest myself.