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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.
CDKL5 Travels: The Magic of Disney
“A Dream is a Wish your Heart Makes!” …and we had a dream for our girls. Dustin and I wanted Harper and Lily to enjoy the magic of Disney together. Harper is old enough now to understand and enjoy much of what Disney has to offer and still able to manage for travel. Not knowing […]
Old Friends, New Adventures, and the Possibility of Princesses
Harper + Harper = Instant Friendship It’s been just over 2 years since we had the amazing opportunity to take Harper on my business trip to Orlando, Florida to meet the Dolly’s Foundation rehabilitated swimmer pup, Harper, and it’s inspirational founder, Erica Daniel! The two Harpers were instant friends. At that time Harper was just […]
6 Months
As I mentioned in my last post we decided to go for the “Gold” and add the “gold” industrial hemp oil to Harper’s current supplements which include “black” industrial hemp. To recap: Week One (adding high amount of “Gold”) = 22 seizures Week Two (2 days of gold) = 16 seizures I ran out of […]
4 Months
We CANNOT go back to life before high-CBD! January 16th will be 4 months on Industrial Hemp Oil! Oh My Goodness is that ALL?!? I can’t even begin to imagine Harper without Hemp! They can’t stop making it! We can’t go back to the way things were! On our bad days with Hemp, like with […]
Motivating, and Suffering: My Summary of American Epilepsy Society 2013 Annual Meeting
Motivating information, yet Harper and kids like her suffer still As motivating as the information obtained from the American Epilepsy Society 2013 Annual Meeting was it brings to light the realization that we have a long way to go. And the fact that we have been doing all we know to do for Harper for […]
NEW EPILEPSY RESOURCES from the 2013 Annual Meeting of the American Epilepsy Society
Penny is soaking up all of the knowledge she can at the AES 2013 Annual Meeting in Washington, D.C. and has set up a page of all the latest information and resources being made available to all attendants. So here it is, your Virtual 2013 AES handouts page. Enjoy!
Toes Painted Purple for Epilepsy Awareness Month 2013
What do purple toes mean? Hope4Harper supporters painted their toes purple during November to help spread awareness of Epilepsy. Below is Harper’s Facebook Gallery of toe painters and who they painted them for. The Facts about seizures: What they look like and what you should do Post by Hope4Harper CDKL5. Let’s commit to increasing awareness […]
2 Months
The numbers are clear The last two weeks for Harper on Industrial Hemp Oil have not been as good as the first two, but there is still improvement from prior to our use of the product. Week 7: 39 seizures Week 8: 45 Seizures Still less than 64 seizures from the week […]
How to Apply for Disability Benefits for a Child with CDKL5 Disorder
A post by a guest blogger means a brain break for Penny and relevant info for you! This week I am grateful for the help from guest blogger Ram Meyyappan who is a disability expert and advocate. Ram is associated with a subscriber website that promotes disability awareness and connects individuals with disability advocates and lawyers in […]
Week 6
In the six weeks prior to starting hemp oil Harper had 210 visible seizures Harper has what is known as “Spasms” not “Infantile Spasms” because Harper is no longer an infant. During these, we have rapid eye movement, pupil dilation and constriction, rolling and locking of eyes up and to one side, breath holding, screaming, […]