We looked into all of the medical interventions there were to help understand why suddenly her balance went away and her hyperventilation became uncontrollable. We couldn’t find anything. But, my optimism forces me to believe there’s always a solution. So Continue Reading
Looking for answers
https://youtu.be/c2DOAFYv-J4 Thank you to everyone who has reached out or left a comment or sent a note. We appreciate hearing the words of encouragement. These last few weeks have been difficult watching Maggie struggle as she has. But we’re fighters Continue Reading
Is it starting to go?
They tell me that Rett Syndrome is progressive. They tell me it’s inconsistent. They tell me it might get worse, but it might not. She might have seizures, she might not. She might need a wheelchair she might not. The Continue Reading
Maggie’s Response to the Chan Zuckerberg Institue
Thanks so much to the Huffington Post for sharing our story. http://www.huffingtonpost.com/entry/dad-fights-for-cure-for-his-daughters-disorder-in-emotional-video_us_573b5ac5e4b0646cbeeb08cc? Maggie and I made a video to thank Mark Zuckerberg for responding. We will try to keep dialogue open with the Chan Zuckerberg Institute, but now we will Continue Reading
An open letter to Mark Zuckerberg and the Chan Zuckerberg Initiative
Dear Mark and Priscilla, It feels odd to be writing to you in this way. Then again, I can’t imagine a better forum to connect with you then the one you dreamed up in your room when you were in Continue Reading
How to teach reading
As I sit here on the eve of her IEP meeting, combing through notes, preparing to fight, I’m reminded about what the fight is about. Maggie is smart. She understands everything. But the school system tests using motor skills and Continue Reading
Dealing with illness with grace
I’ve blogged about Maggie being sick. A lot. It’s the worst. Having a sick kid is always hard, but having a sick kid who can’t tell you what’s bothering them and can’t control their body to blow their nose, spit Continue Reading
How does a regression happen?
After witnessing Maggie’s struggles with communication, I’ve become more aware how complex communication really is. People who knew her when she had access to a few words are still, as are we, confused about how it can be there and Continue Reading
Holding our breath
https://youtu.be/uHIgNZHnBVo I don’t love sharing stories about going to the doctor. I follow enough blogs and other families of special needs kids that I get my fair share of unfortunate hospital visits. And we’ve been pretty fortunate to have avoided Continue Reading
The calming benefits of the aquarium
After the scoliosis scare I wanted to do something light with Maggie. I wanted to celebrate with some new fish for her tank. We had bought a fish tank for her many moons ago and she loves it, and I Continue Reading