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, who at 25 is still no further along in their Continue Reading
Sign this petition
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
Jinxed on Sleep
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 Maggie was falling asleep in under an hour. I jinxed Continue Reading
Conversation Piece
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? Continue Reading
EEG results
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 Continue Reading
How hard work pays off for our girl with Rett
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 Continue Reading
Baby’s first EEG
A whole lot of screaming getting connected to the machine, but she ended up exhausting herself so she fell asleep as they had hoped. The EEG gave the doctors no immediate cause for concern but we won’t know the full Continue Reading
More testing. More problems.
I think Jenny and I have both been reticent to admit the nerves we’re experiencing. Maggie’s EEG which was scheduled months ago has finally arrived. We go in on Monday. While we were told it is very likely to be Continue Reading
