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
The Scoliosis Scare
https://youtu.be/nov-LgyOidg When we were first told about Rett Syndrome the doctor suggested we start immediately on Speech Therapy, Occupational Therapy, Physical Therapy and Hippotherapy. While the first three were familiar, Hippotherapy was not. “It’s horseback therapy,” we were told. “For Continue Reading
The First Annual Gaga For a Cure
Guest blog – submitted by my brother Steve Tesler with help from Maggie’s cousins, Leo and Zeke Tesler. So grateful to have a village of people who go the extra mile. https://youtu.be/y6LflUvtPCg Every December for the past couple of Continue Reading
A New Addition – A Difficult Choice
https://youtu.be/eFKRFlljg-k We’d wanted to have a baby since Maggie was 1. I have two brothers (much older) and Jenny has a sister (close in age) and we’re both very appreciative of the relationships we have with our siblings. They challenge Continue Reading
Through her eyes
https://youtu.be/PJuUpDefrhY I wanted to put a go pro on her and show what it’s like to be Maggie. This was supposed to be a follow up to the communication video from last week. It was supposed to show how engaged Continue Reading
How to talk to a non-verbal kid
Talking to a non-verbal kid is a complicated endeavor. They can’t talk and so we don’t listen. But what we’ve learned is that they do talk. She doesn’t use words. She doesn’t use hand gestures (consistently) but she does talk. Continue Reading
Rettland Foundation
When Maggie was first diagnosed with Rett, AJ and I were adamant that we would only donate money to find a treatment or cure for Rett. Then we found out there were clinical trials that had started but were having Continue Reading
You Can’t Understand All
We’ve talked a lot about how great the Tobii is and how phenomenal it is to hear her thoughts. The thing that we don’t really talk about is the limiting nature of it as well. The amount of words she Continue Reading