Waiting for the other shoe to drop

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 progress than Maggie, or for whom the worst has happened. With Maggie, I’ve convinced myself[…]

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 us. It was probably the next day when she figured out there was an opening[…]

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? Yes? Or No? Maggie: Ess AJ: Do You want more beef? Yes? Or No? Maggie[…]

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 from what we were told we were going to hear, it just changes from what[…]

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 herself whenever she does.

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 results until tomorrow or even later, so anxiety will continue until then.

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 abnormal, as all girls with Rett have abnormal brain scans, we’re both hopeful, maybe Maggie[…]