Over the weekend last week Waverly started having infantile spasms again. If you recall they are a very damaging type of seizure and are bad news. We know that seizures are part of her condition, and it's a matter of controlling them but not medicating her so much to the point that she's unresponsive. However with the IS, they are so damaging that you want to get rid of them completely and quickly. (When she started with them last year they were so bad that after two weeks she no longer smiled or interacted at all, for several months!)
As a result, her neurologist asked us to come up to UVA for EEG testing to see what's going on and what to do with her medication.
We have been here since Wednesday afternoon and after a crazy fiasco of not being put on the EEG or even getting out of the ER for over 24 hours, she is now hooked up and we are rolling. We should hear from the doctors soon and have some direction after speaking with them.
From Granspa Greg's cousin Debbie; my prayers are lifted up for your comfort as you watch over whatever God has planned for Waverly. I saw a neat sign on Facebook today that was pic of Jesus' sandaled feet in water; it read .. When you feel like you're drowning in life, remember the lifeguard walks on water. What extraordinary peace!
ReplyDelete