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[…]

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 and it wasn’t until I called them again in January to ask what was happening[…]

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 struggle. It seemed like it would be confusing to her. It seemed like it could[…]

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 balance is a little wobbly. She manages fairly well, but she is more apt to[…]

Where to begin

This has been a crazy week. Maggie continues to impress every chance she’s given. She’s walking down the stairs by herself now. Most of the time she holds the railing, but tonight, she just walked. By herself. That’s something she couldn’t do a month ago. We saw this video of a girl with atypical Rett[…]

Virtual 5k

We did our first Rett event today.  It was supposed to be a 5k at a park but due to rain it ended up being a stroll around a mall.  It was nice meeting some of the other families, but Maggie was the only girl who could actually walk around the mall.  All the other[…]