
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
They thought they would teach their daughter about the world Instead they have to teach the world about their daughter
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
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
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
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
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
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
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
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
A hard 5 minute conversation for you, could be a gift of a lifetime of actual conversations for my child. As we start the new school year, at a new school, with new friends that is all I can think Continue Reading