Another post and still no seizures to report! Yay! We slide through January with no seizures which is great. We haven't had a seizure free month since August. Here's to hoping we can make it through Feb with none as well.
In other developments we are finally off the living room floor! Yay! We got Lily a big girl bed that has a trundle that Taz just knows if his to sleep on. That works out very well because of all his long fur he gets very hot laying on a comforter. So he does start off the night in bed with her but once she is asleep he moves to the trundle where he is much more comfortable.
We also got a video monitor for Lily's room which is just awesome because now she can play in her room whenever she wants and I don't have to run upstairs every two minutes to check on her and I can talk to her through the monitor. And it makes it nice because I can now put her to bed at a decent time and Tracy and I can chill and watch movies, etc. And she loves it! Being a big girl and going to bed in her own room. Now when its time for me to go to sleep I do sleep in her bed and will for awhile. I need to do this in baby steps. ;-) I did try sleeping in my bed the other night but my brain kept yelling at me "She is over due for a seizure!" so off I went.
So we did end up switching Lily's Nuero to Dr. Brown (If you look back in Nov or Oct posts you can read all about the amazing Dr Brown) and we are very happy we did! I am completely pleased with Lily's team now and Dr. Brown is on board for the research with Lily and Canavan so yay! It's wonderful to have a neuro I can feel free to talk to about the research instead of having one that I feel I need to hide the research from. Also if/when the latest combo of drugs fail with seizure control (so optimistic aren't I? lol) we want to do the Keto diet so Dr. Brown is already checking into that for kids with Canavan. This guy is on it!
Well I really wanted to make this post longer but I have a rip roaring cold that is making my head really hurt, so until next time,
Thank you for reading!!
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