This last two days, since Ella’s episodes began, I have been walking around in a fog trying to keep myself off the Internet. Steve tells me all the time that google doesn’t have a degree in medicine. Blah blah blah. Where else am I supposed to get information if Ella’s neurologist isn’t on call 24/7?
I am happy to report that Ella’s amazing neurologist did get back to me very quickly and we are in the process of setting up an at home EEG for her. I am assuming this means we have to go down to Columbia to get her all hooked up. When I speak to the scheduler tomorrow I am hoping to get confirmation on that.
Yesterday she made it all day episode free. Today, we weren’t so lucky. She had three extremely short ones, and I missed them all. She was with Dani and by chance, Steve was in the room for one. He tried to record it, but it was over before he got the chance. I am hoping this new EEG provides some answers since the last one we had was inconclusive.
Tonight I ask everyone for prayers for my little fighter. She takes it all in stride and carries on as though she doesn’t have a care in the world. It’s me who is worried sick and has nine million thoughts running through my head. She is so incredibly loved and we have felt so much support from so many people since sharing our story. I can’t tell you the countless texts, messages, and calls I have gotten just checking in to make sure we are all ok.
I ask, if you can, to share my blog on your page. It sounds silly but maybe there is someone out there you know that might be able to help our little girl. I have already been connected with some great people, and resources, but am always looking for more avenues to explore. I have heard so many stories of how social media has changed peoples lives for the better. We can’t leave any stone unturned.
I will open up my posts as public so they can be shared on your page if you so desire, and just ask that you tag me in them so I can answer any questions people might directly have. I am hoping this might open up another door or two, or at least shed a new light in our current situation.
Once again, thank you all for caring so much and being there when we need you. We are so very lucky to have you all.
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