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
Listen closely.
When Maggie was first diagnosed we delegated responsibilities – I was going to work with her on physical gross motor stuff. Shelly, Maggie’s aide, was going to focus on fine motor stuff and Jenny was going to focus on Continue Reading
A two week journey in two parts. Part 2 – The Disney Cruise
Christmas day. 2015. End of Leg 1 of our two week vacation. We all sit around the living room of my in-law’s house, opening presents, sharing the last moments of togetherness before we head out on the next leg Continue Reading
A two week journey in two parts. Part 1.
In Los Angeles, everything shuts down for the final two weeks of the year, as everyone escapes back to their family or goes on vacation. We’re fortunate to be able to do both most years. We typically spend Christmas in Continue Reading
The summary of Maggie in 2015
Last week I wrote about the science and how far it’s progressed. This week I wanted to reflect on how Maggie has changed, how much she has accomplished, how Rett Syndrome continues to affect her and how she continues to Continue Reading
Why the #hopeisreal…
Last week, Jenny and I wrapped up our formal fundraising efforts for this year. Our friend, Jaime Morgenstern, who runs Gilt City events gives us a booth and donates some money to RSRT. They also donate a bunch of liquor Continue Reading
Breathe
One of the symptoms of Rett Syndrome is a difficulty breathing. Maggie hasn’t always had this problem, though recently she’s developed it. And it’s a hard one to watch. We just have to watch her struggle and gasp for air Continue Reading
Cooking with Maggie
We’ve talked a lot about hand over hand exercises on this blog and have assumed that most people reading this go “oh yeah, I know what that means, I do it all the time.” But I realize I wouldn’t have Continue Reading
13.1
13.1 Miles. I have never aspired to be a runner. Two years ago, I downloaded the couch to 5K app on my phone. I thought, well it’d be nice if I could run a 5K, that’s 3.1 miles. Who knew Continue Reading
The implications of 5
Last week Jenny wrote about her birthday and the mixed emotions that come with it. This week, I wanted to share a little more detail about that. 5 is an important year for a lot of reasons. In my family Continue Reading
