Wow! Today was a bit nutty but good. Started off the day getting three kids ready, dressed, fed, hair done and of course beautifying myself, all by 9am. Today was the day for our local TV news station, WGAL, to come tape. They did a really great job and I’m very anxious to see how they put the story together. It should air sometime in November probably on the 12th. The reporter said they wanted to save it for sweeps.
They first got some footage of Lorelei playing with her sister and brother and then moved on to her taking her morning medicine. I should have known that even though she fights with us tooth and nail to take it, she would do it with virtually no fussing at all while they were here…..of course! Next they did separate interviews with me and hubby. I think the reporter asked great questions and hopefully Jason picked up stuff that I may have forgotten and vice versa. I was so nervous, which is strange, I’m not generally a nervous person. I definitely need to learn to open up and be more myself in front of the camera. I was hoping they would have been able to catch one of Lorelei’s seizures on tape but that just didn’t happen today. I sent them some home video of her having a seizure so they will probably use that.
I think when people see her have a seizure that sometimes they think, well that’s so short how can it be so damaging? The fact is, it happens several hundred times a day. If you think about losing three to five seconds of time, several hundred times a day, it turns out to be quite a lot. Her brain is constantly trying to recover from her last seizure and she’s really not old enough to put all the pieces together.
On Thursday Fox 29 will be coming so its going to be a crazy week! Hopefully I can learn to loosen up by then. It’s so important that I get the message across in a knowledgeable, but emotionally connecting way.
Lorelei has still been eating great. Pumpkin roll has now been reserved mostly for snacks. A huge weight has been lifted knowing that, at least for now, a feeding tube is off the table. Her behavior has continued to be off the rails but I can’t even imagine what is going on in her little mind. With as much craziness as goes on in her brain I don’t know if I could hold myself together either.
We continue to live day by day and fight the fight and hope and pray that someday soon will be able to have chance at a better life for Lorelei through medical marijuana.
If you haven’t had a chance yet, please take a moment to sign our petition. There’s a link to it on this page. Please share it with everyone you know and ask that they sign and share it as well. Thanks!
Love & hugs