Hi! Its been awhile. Life has been a rollercoaster. This past year we have had the exciting news that two different gene therapy trials have started. YAY! Magnolia is loving middle school. YAY YAY! Gray loves STEM, legos and minecraft. Continue Reading
Words we have been waiting for….
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
How to turn your Iphone into an Eye Gaze Communication Device
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
Surfer girl
A week of surf camp was not enough. What an unexpectedly amazing week we had in Long Beach, NY. Magnolia has always loved surfing, we have been getting adapted surf lessons since she was 6 years old. She is now 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
In sickness and in health….preferably health
I am trying to relax, it isn’t easy. On days that I feel good, I often do too much. Last week when I woke up, I felt great. So I did three loads of laundry, went for a walk, did Continue Reading
Rett Syndrome, Cancer and coffee… a memoir
It just happened. I woke up, got dressed to go for a run and there it was. A large lump on my neck. I wondered…I had bloodwork done the day before, is this a reaction to that? What is it? Continue Reading
Am I missing something?
This past week I kept thinking, “I’m missing something. Is there something else we could be doing for her breathing? Or for her hands? Or for anything else?” To tell the truth I hadn’t been keeping up with where things Continue Reading
