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
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
IEP
IEPs are dumb. That’s the school district process whereby people who have never met Maggie spend 30 minutes with her and evaluate all of the things she can and cannot do and make recommendations about how she’s going to get Continue Reading
Event Wrap Up Brings Us to…
The auction I put together ended up raising over $30,000 and the event it was a part of raised over $700k – 96% of that goes directly to fund research. That’s a spectacular number and I’m so honored to be Continue Reading
Traveling
Traveling is always harder than it needs to be, with more thought than should be required needing to go in to what to bring, how she’ll be comfortable, what will entertain her on the plane, how will we keep her Continue Reading
Boston – IGF-1 Clinical trial
A clinical trial for Rett Syndrome called us over the weekend to let us know that a spot had opened up for Maggie. She’d be the 30th girl of 30 girls in the trial. Our emotions are all over the place. Continue Reading
October is Rett Awareness Month
We found out October was Rett Awareness month when we first were diagnosed and we’ve been talking about it for months. What are we going to do? How will we contribute to Rett Awareness Month? I had grandiose plans, but am Continue Reading
