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Wednesday, December 7, 2011

EEG results

Ava's video EEG was very helpful.

*It confirms that much of what Matt and I are calling seizures or seizure activity are, in fact, seizures.
*It also revealed that our sweet Ava Bean is having many more seizures that are going undetected.
*This allows us to make more informed choices about medication and possible future dietary changes.

After a 2 1/2 hour meeting with Ava's epileptologist, we have a bit of a road map for how we'll try to get ahead of and control her seizures, and we also have a better idea of the developing picture of Ava's brain development. Today we'll talk with Genetics and she'll get a lumbar puncture as well as some other blood tests. We'd thought we might go home tonight, but she had a pretty busy night and morning as far as seizures go, so that may or may not get to happen.

Of course no one knows for sure what the future holds. And honestly, there's mercy in not having the whole picture revealed to us now. However, we do know that right now, Ava's brain needs to "cool off" so she can develop. At this point, she pretty much like a newborn developmentally, so she deserves some seizure-free time to see what her brain can do when it's left alone for a while. We so appreciate your prayers that this would happen sooner than later.



Brea said...

Sara- as I've been reading your posts and praying for your family, I've been thinking about a close friend of mine who has two boys that have the same disability and they have seizures. It took them many months to figure out what it was that was causing the seizures and a doctor in Colorado knew. It's called NKH. Neuro-kinetic-something. It's a metabolic disorder. Have you heard of it? I'm not sure if this could be of any help to you, but I wanted to let you know just in case :). You're doing a fantastic job and it's such a blessing to hear about your families stories.

Sara said...

Brea, thank you for your comment! I haven't heard of NKH, but i'm glad your friends have found a cause for their sons' epilepsy. We're still doing lots of tests and are so thankful to be at a world class epilepsy center for that reason. I really appreciate your encouragement. God uses your words and the words of others to bless me along the journey regularly! Thank you!