To Detroit

We are in Detroit this week with Ella, seeing a child neurosurgeon who is a renowned expert on epilepsy and infantile spasms. We've known about him from the beginning of Ella's diagnosis and have exchanged emails with him in the past. We always thought we might head this way if it became clear that seizures were persistent even through many trials of medication. While some have had longer med trial periods and have "failed" more meds than Ella has before making this trip, we felt it was time to see if there is anything else we could be doing for her. This includes surgery, which would not happen on this trip nor would we make such a decision without ample analysis of the pros and cons. At the very least, we want to seek more information about why these seizures are occurring, and hope to gain insight about where we go from here. We don't want to get years down the road, still battling seizures, and look back and wonder if there was more or something different we could have done.



Today, Ella is hooked up to an EEG and video monitoring. She has been so good to lay in bed most of the day, which is not her normal m.o., and this was by far the least traumatizing hook-up experience we've had, thanks to the tender care from a gentle giant named Lomar. Chris & I are supposed to take turns watching her throughout the night and record any suspected events. We don't typically pray for seizures, but today we have prayed for that very thing. The more information we have about what happens in her brain during a seizure, the better chance we have of finding the proper treatment for her. (Of course realizing that seizure medications lose effectiveness over time and that we may not find the end all be all treatment, we hope to find at least something that will stop the seizures in the short term.)

Tomorrow, Ella will be sedated for an MRI and PET scan. The MRI machine here has a higher resolution than the one in Little Rock, and she's never had a PET scan before. During the PET scan, she will continue on EEG so that the information they obtain can be overlapped to give simultaneous comparison of brain function & activity.

On Thursday, we will see Dr. C who will do a full exam and will go over the results of all the tests with us. We are looking forward to finally meeting him in person.

I will post updates when we know more, providing that my phone will stay charged, as that is what I am using to tap out these entries. 

We miss our boys and send tons of hugs and kisses back home.

♦