US THEN 2016 , The words we have been waiting for… FDA approves Trofinetide for treatment of RETT SYNDROME! This is big news! This isn’t a Continue Reading
I am happy Magnolia thinks I’m annoying
A week ago, we forgot Magnolia’s eye gaze technology computer at home when we went to visit the grandparents for a night. Unfortunately, we remembered on the drive to their house which is 1.5 hours away. Special needs parenting fail Continue Reading
Its just a phase….
When Magnolia was 2. doctors would tell me, “It’s just a phase.” No matter what I would bring up to them. Of course with her, it wasn’t just a phase, it was Rett Syndrome. Actually for her it was a Continue Reading
Awareness is the goal
If you have been following us for awhile, you know that we focus on three main goals. Awareness for Rett Syndrome, fundraising for Rett Syndrome organizations, and living life as best we can. When Covid hit, our focus shifted. Those Continue Reading
This is 10
Today is Magnolia’s birthday. 10 years old! She is in so many ways everything I would hope my 10 year old would become. She is wise, and smart, and defiant, and demanding. She is strong and sweet and funny. She Continue Reading
Let’s play ball!
Summer has begun for everyone, at least in our hemisphere. On social media I have seen families sending their kids off to camps, going on family trips and also just swimming by the pool. It’s been a tough few months Continue Reading
Palm Springs
A couple of weeks ago, we took a little weekend trip to the desert because nothing says relaxing like 109 degree temperatures. It started out auspiciously with Maggie unable to calm her body, communicate her wants or regulate her body Continue Reading
Hand over hand battle
For the longest time it has felt like we were losing the battle with hand function. Stopping any more loss of functions for Maggie has been yet another one of our primary goals, since the diagnosis. We spend most of everyday, Continue Reading
The Houston Report
This trip to Houston was a little different than the last one. At the last one we were nervous and everything turned out as good as could be expected. This time we weren’t nervous and we didn’t feel like it Continue Reading
Back to Houston
After a really great and relaxing week spent with family, swimming every day and getting eaten alive by mosquitos, we’re going back to Texas Children’s Hospital in Houston today – the mecca for Rett research. We’re going to see Maggie’s Continue Reading
