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
Tucked in
I tucked my daughter in for the first time in over a year today. She likes to rock, so tucking her in has been impossible. See: But I used a king sized sheet and tucked her in so tight she Continue Reading
This is what Rett looks like
We’re grateful that she can do this. Not all girls with Rett can. It just goes to show that their only real limitations are our own self-doubt.
School
We’re having a tough time deciding between school options right now. The IEP we got, which is an evaluation from state funded therapists, recommends literally no services for a girl who needs intensive therapy in order to continue to progress. Continue Reading
What to do to help
I’m going to keep a running tab of the things you can do to help cure this disease. It’s honestly in our power to cure this. We just need to refuse to concede. And come up with more than four Continue Reading
Busy day
First stop today was the cardiologist which we’ve all been pretty anxious about. Girls with Rett have an increased incidence of prolonged qt interval (a doctor’s words, not mine (though I have been repeating it like I have any idea Continue Reading
Remaining Optimistic
The key to any real optimism you can sink your teeth into is a healthy dose of denial. The more you believe one, the more you can latch on to the other. I believe she can get better. I believe Continue Reading
