“It is always sad when someone leaves home, unless they are simply going around the corner and will return in a few minutes with ice-cream sandwiches.” ― Lemony Snicket
Preparation to leave our CDKL5 family is intense!
It’s off to Pennsylvania for the 69th Annual American Epilepsy Society conference. AES provides information in “research and clinical care for people with epilepsy.” We are excited to learn about new technologies and treatments, as well as meet with our beloved Dr Francis Jensen, re-connect with Mrs. Brandy Parker of My Epilepsy Story, Kathryn Frame of International Foundation for CDKL5 Research, along with many others!
We look forward to collecting and sharing as much epilepsy-related info as we can, including any new findings in seizure research and control. Follow Hope4Harper on Facebook to get instant updates on our trip.
How do parents in special needs families prepare to leave home?
I made a video of everything we have to do before heading out the door on our trip to AES 2015.
A getaway for two…sort of
Dustin and I are also very excited to be making this busy trip with one another, united in the representation of our non-profit Hope4Harper. This is a very big deal for us as we are leaving behind our three children, one of which has special needs and is medically fragile. We are very fortunate to have nursing care for Harper, and parents and other family who are willing to bear the responsibility of caring for our home and our children (and Petey too!) while we are gone. Without them this would not be possible and we are grateful!
Although we are going on this trip “together”, Dustin and I are taking separate flights, on separate airlines, leaving from separate Dallas airports to arrive in Philadelphia at separate times. We will return home separately as well. Why? There are necessary considerations of the possible “what-ifs” in life and the impact for the little ones who depend on us. This means we never travel together unless all of our children are with us.
As parents in a special needs family, it’s very scary to travel because we have structured our entire life around providing life-sustaining care for Harper. I want to acknowledge it’s just as fearful for parents of typically developing children when they travel without them.
Sometimes it’s easier to just bring them with you!!
-Medical Consent Forms prepared
-Ketogentic Food Preparation
-Ketogentic Formula Preparation
-Medications Pulled
-Nurses Scheduled
-Prayers Said
We are ready to roll.