So, a super cool new function of IPhone is head track switch control which allows any IPhone device to be turned into an eye gaze communication device, plus it allows anyone without use of their hands access to IPhone in 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
Reliving
Trying to disassociate from our own lives in order to craft a story as a filmmaker was difficult. Explaining how it feels to get a Rett Syndrome diagnosis, explain what Rett Syndrome is and the enormity of living with it, that was hard. Reliving life with Magnolia, I’ll cherish every moment of it.
Through the month of December the documentary is available to rent at www.magnoliashopedoc.com.
Spinning out of control
A very common statement said to me is, “I don’t know how you do it”. I usually don’t know how to respond other than smile and change the subject. Truth is, there are days that life is spinning out of Continue Reading
Diagnosis: uncertainty
We have all known life is uncertain, but 2020 has really handed us uncertainty on a silver platter. If anything Covid has given the world a glimpse into our lives. The entire world is contemplating medical uncertainty, a range of Continue Reading
What would you ask for?
We have been told numerous times, “We are so close to a cure.We are so close to treatment for Rett.” We have had so much hope for a cure, but even a treatment, something to abate one of her symptoms Continue Reading
Memorial Day weekend
We had a packed weekend, which I love. Saturday, Magnolia was to have gymnastics in the morning and Gray asked to go climb a mountain. So Mags and I had fun going to gymnastics while AJ took Gray to hike Continue Reading
One little pill
What a difference one little pill has made in our lives. Two weeks ago I lowered Magnolia’s seizure meds. She was taking 3 pills in the AM and 3 pills in the evening of Topirimate aka Topimax. She now takes Continue Reading
Diagnosis day – four years with Rett Syndrome
Maggie was diagnosed on 12/17/2013. This day is known as D-day in the world of Rett. Diagnosis day. This will be year 4 since diagnosis. Maggie is now 7 years old. Life is different now. Four years ago, Maggie hadn’t 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
