Your ads will be inserted here byEasy Plugin for AdSense.Please go to the plugin admin page toPaste your ad code OR Suppress this ad slot. I feel like that’s all we’re really doing. Every day we read about another girl with Rett who’s seizures are out of control, who had to get a feeding tube,[…]

Your ads will be inserted here byEasy Plugin for AdSense.Please go to the plugin admin page toPaste your ad code OR Suppress this ad slot. It’s to get the White House to approve funding for Rett. We need loads more signatures, but you can only get there one at a time. https://petitions.whitehouse.gov/petition/provide-funding-rett-syndrome-research-devastating-neurological-condition/JPSWw7gP

Your ads will be inserted here byEasy Plugin for AdSense.Please go to the plugin admin page toPaste your ad code OR Suppress this ad slot. Everyone other than me may have known it was a bad idea, but my pridefulness necessitated the sharing of the news. A week or two ago I had written that[…]

More positive developments: So last night I had a conversation with Maggie. A full, actual, amazing conversation. The first one I may have ever had. It started at dinner and went like this: AJ: Are you enjoying your fried rice? Yes? Or No? Maggie: Ess AJ: Do You want more beef? Yes? Or No? Maggie[…]

So the results are in. She is not currently experiencing seizures, but she did show some “disruptions”. All that means is that, as expected, her EEG was abnormal and she is at risk for seizures. This doesn’t really change anything from what we were told we were going to hear, it just changes from what[…]

After last week’s post, I think I need to share some good news. This is an update on her walking down the stairs. This took a lot of fighting. But now she can do it. And she’s super proud of herself whenever she does.