The months of June and July have been challenging. Lily Kate's epilepsy started getting worse with some strange events I weren't even sure were seizures. When most people hear the word "seizure" they think of an out of control person convulsing on the ground. Well true this can happen, known as a grand mal, but the ones we were seeing with Lily Kate were far from this. The ones she has been having looked like she was just out of it and chewing something with her mouth. We would call her name and she wouldn't respond. It has been torture. In the course of a month and a half she had about 15 of these kinds of seizures that lasted anywhere from 5 minutes to 15 minutes. Everytime she had one I called the doctor and he continually increased her Keppra and ended up adding another medicine called Onfi. After several of these seizures and 24 hour ambulatory EEG we found out she has been having "Temporal seizures coming from the left side". These are partial seizures that only happen in part of the brain. After many increases in both Keppra and Onfi we think we finally found an anti-epileptic cocktail that seems to be working for now. Not fun. I hate pumping my 19 month old daughter with these crazy medications everyday. What are the long term effects? Who knows? But it's the only choice we have right now.
On the bright side Lily Kate has NOT regressed. Praise the Lord that heals and saves and rescues! She has been making some great connections in Speech therapy and Occupational therapy. She didn't even qualify for government assisted speech therapy (ECI) because she is a chatterbox. (We still have her in private therapy though) She is a mockingbird! And her fine motor skills in Occupational therapy are improving as well. She has an emerging pincer grasp and is being very purposeful with how she picks up things and places them. Her cognition is coming right along. She understands a lot. Sounds certain animals make, who certain people are, naming various things (everytime she sees something she knows the word for she says it aloud), says hi to everyone in every store, says "bye" and immediately says "wuv you" (love you) after telling them bye, and she sadly knows what a "time out" is. Its her least favorite thing. =) Thank you to everyone that has been praying for her during this time. Please don't stop. God is listening. Your prayers matter to Lily Kate. She would tell you she "wuvs you" if she knew you were praying for her.
