Blog
Blog
Our journey with Harper was full of adventure, difficult decisions, and exciting possibilities. Please use the search bar to type in a word of the experience you are searching for such as, CBD, Organ Donation, Eye Gaze, GTube, etc…. If you are unable to find information please feel free to contact us directly and we will help you in any way we can.
1 Month
After such a long time where our ‘normal’ was 10-15 seizures A DAY: 10/7: 1 Seizure 10/8: 1 Seizure 10/9: 3 Seizures 10/10: 1 Seizures 10/11: 2 Seizures 1012: 1 Seizure 10/13: 2 Seizures Total for week 4: 11 Seizures A recap of our previous weeks of our trial with […]
Week 3
It’s not about “All or Nothing”…It’s about Improvement! Harper had a low grade fever all week with some Gastro Intestinal Issues. Regardless, we stuck with our current dosing of Hemp Oil. For the first time ever Harper exhibited more seizures during illness. Usually she has significantly less or sometimes no seizures when she is not […]
Week 2
Zero is big During Harper’s second week using HempMedsPx high-CBD hemp oil we documented ZERO seizures! Oh what a joyous week that was!! From September 23rd through September 29th Harper enjoyed an entire week seizure-free, and we couldn’t have been happier! What does a week of no seizures get us? Sadly, on September 30th Harper […]
Hope4Harper Visits Seizure Research Project Lab in Philadelphia
Where the ‘Land of the Free’ was created Last week our family took a trip to Philadelphia to meet with Dr. Francis Jensen, Professor and Chair of the Department of Neurology at the University of Pennsylvania. Three years ago we first met Dr. Jensen in Boston to find out why Harper was having seizures that […]
Week 1
Is it the Medical Marijuana (MMJ)/Cannabis? or Is it the Cannabinoids (CBD)? We live in Texas where trying MMJ is not legal and we are not prepared to uproot our family and move away from our support system in order to try a supplement that may or may not work for Harper’s seizures. We were […]
Harper’s Unexpected Five-Day Hospital Stay
Harper’s spirit is strong but her body is fragile! It amazes me how she can so quickly go from good to bad, as I am sure it is with most children battling illness. Last Tuesday, September 10, 2013 we found ourselves unexpectedly hospitalized for five Days because of a severe electrolyte imbalance and a urinary […]
2013 HempMedsPX Run 4 Hope Results and Photos
2013 Run 4 Hope Photo Gallery Participants of all ages, organizers, sponsors, relatives and friends gathered with us to raise awareness of CDKL5 Disorder and money for seizure research. One fourth of the U.S. was represented by virtual runners. Thank you to everyone who participated with us! HempMedsPX Run 4 Hope 5K Results Courtesy of […]
WHAT COLOR ARE YOUR SOLES?
THE PERFECT PRE RUN to the Run4HOPE….SIGN UP NOW!!!! https://psim.shutterfly.com/5k August 31, 2013Andy Brown Park-East 260 East Parkway Blvd., Coppell, TX 75019 First 500 to pick-up packets guaranteed a 5K in the Park T-Shirt! Registration Fees $30 5K August 12th-August 29th $35 5K Race Day Registration Pre-Race Packet Pick-Up @ RunOn! Coppell Tuesday, August 27th […]
CDKL5 and our UNAVOIDABLE CIRCUMSTANCES
Harper will be having two surgeries at 9:30am on Monday July 22, 2013 Gastrostomy tube for feeding and hydration issues Nissen Fundoplication for gastroesophageal reflux difficulties. The surgeries are at Medical City Dallas and will take an hour and a half. Because she is non verbal, and severe special needs, a surgery that typically releases […]
CDKL5 “Plays Wisely”
“It does not matter how slowly you go as long as you do not stop.” ~ Confucius We learn shapes, sizes, colors, math, quantity, alphabet, reading and MORE! PLAY WISELY http://www.playwisely.com https://www.facebook.com/pages/PlayWisely/112131883048?fref=ts DVDs and APPS for your child: http://www.sparkabilities.com