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
Government services
After months of fighting with the Regional Center for Early Intervention services I finally gave up and just started paying for private therapists and services. It was less time consuming than the alternative. We got an evaluation done in October Continue Reading
Communication Expert
We talked to a Rett communication expert today who told us that it has not been her experience that girls learn how to speak after their regression. She noticed Jenny and I took that a little hard. See, if we Continue Reading
The Dentist
We were supposed to go at her second birthday. But we were scared. Getting her to lie down, get her teeth cleaned, when she won’t even really let us brush her hair for 15 seconds seemed like it’d be a Continue Reading
Superhero Suit
Today we went to see a physical therapist who’s been described to us as a mad scientist when it comes to outfitting kids with motility problems. Maggie doesn’t have mobility problems, per se, but she does have ataxia. So, her Continue Reading
