Maggie can’t pedal a bike – but Jenny’s mission has been to get her to experience bike riding one way or another. There was a scooter she never quite got into. We tried a tricycle that worked for a little Continue Reading
Fender Bender and #givingtuesday
Since Maggie’s diagnosis, we have gotten used to unwanted news and adapting our lives. So much so, news that would send most people into a panic, AJ and I tend to just say “It is what it is.” So getting in Continue Reading
Finding things to be thankful for…
As the holidays roll around I realize it’s almost been a year since we got the diagnosis. We’ve gone through a lot of emotion this year and hardship and change, but still, it’s easy to find things to be thankful Continue Reading
NNZ trial press report released
This past week has been a roller coaster of emotions. Last Tuesday November 12,2014, two days after Maggie’s 4th birthday. Neuren Pharmaceuticals released the information regarding the NNZ trial for Rett Syndrome. This is a big deal. There are several Continue Reading
Maggie’s First Seizure
I posted this picture a few weeks ago on Facebook – what felt like a lazy Sunday. This was at 9am. She fell asleep right after this for about two and a half hours. Somewhere in the middle of that nap I Continue Reading
Beauty Marks
Sorry to be overposting this week, but a lot is going on. Our good friends Kate and Joey from Mr. Kate, a lifestyle brand, are just uber creative and smart and savvy and good looking. And they’re launching a new Continue Reading
Maggie on the news
The news did a story on us back in August when we put out the video (bit.ly/magnoliashope). It airs Wednesday, November 12th, on KCal9 at 10:00 PM. If you’re not local, here’s the story: http://losangeles.cbslocal.com/2014/11/12/couple-determined-to-find-cure-for-daughters-rare-condition/ I’m not sure what we said at Continue Reading
Birthday Celebration
Last year we were on the east coast for Maggie’s birthday and didn’t really have the opportunity to do a big party. Plus at 3, would she really care? This year, after a lot of uncertainty, we decided to give Continue Reading
Halloween
We didn’t know how Halloween was going to go, this year. It’s really only the second time she would have been trick or treating since she’s been born. It was too hectic last year. And the year before we went, Continue Reading
My email chain with the school district:
Names have been removed to protect everyone. I sent this first letter to the PT and OT assessor. Hi…, After some consideration, and in part, because I didn’t know I was supposed to have the discussion at the IEP, I Continue Reading
