I have seen people run races for causes. I have heard that this is a thing people do. But I am not a runner. I am not a biker. I am not a swimmer. I am just a dad who Continue Reading
How to Concert
Whenever we want to do something big and fun that typical kids get to do, it takes careful planning. We spend most of the time wondering if we’re crazy for making her do some of these things, and the rest Continue Reading
Return to Disney
My birthday was a couple of weeks ago. My sister and her family came to visit – it was her birthday too. They wanted to go to California Adventure and Disneyland. This is not something we have cared to do Continue Reading
It’s been a long year
I haven’t sat down to write a blog about Maggie since December. That’s actually not right. I have sat down to write, but I didn’t know what to say. Jenny took up the reins and she kept you all updated Continue Reading
It’s not if, its when…
The News We’ve Been Waiting for: “Gene Therapy Program for Rett Syndrome will be advanced by biotech company.” Last week RSRT sent out an email announcing they will be going to a Gene therapy trial for Rett. Reading those words took Continue Reading
Memorial Day weekend
Holidays can be stressful. All holidays. Right now, Maggie is so exhausted from her new seizure medications, on a day to day basis, we never know what to expect. There are plenty of days, we find ourselves tied to the Continue Reading
Back to school on April 11
We have been homeschooling Maggie this year, for various reasons – mostly, because she had a rough year last year. She was constantly getting sick, which in turn caused more Rett symptoms, and though she has fought so hard to gain Continue Reading
Seizures, part 2….
Today we are 10 days free of seizures (that we know of). After the last hospital visit and 48 hour video EEG, the doctor said they were happy with her meds. AJ and I were both happy, confused, and nervous. Continue Reading
Seizures, ugh?!
We are on our way to CHLA today for a 48 hour video EEG. Yep, that is where we are. We are now dealing with seizures. This has been happening for the past couple of months. We haven’t really discussed Continue Reading
Being a part of history
Looking back, it seems so long ago that Maggie was a part of the Trofinitide clinical trial. At 5 years old, my little girl went through 10 weeks of weekly appointments in a different city, to change her life. How Continue Reading
