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
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 Continue Reading
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 Continue Reading
Sick Today. We think.
One of the hardest parts about having a little girl who is non-verbal is when she’s not feeling well, it’s just a guessing game to find out what’s wrong. My wife noticed she looked a little pale this morning, but Continue Reading
Big Girl Bed
Great day today with a lot of vocalizing at speech and her surpassing her previous performance at PT for a spectacular 6th consecutive week. And after tucking her in calmed her rocking, we decided she would appreciate not being in Continue Reading
