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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.
Harper’s Visible Seizures Reappear
7 Months Seizure Free in Perspective We enjoyed 7 months of seizure freedom: Harper’s smiles, attitude, increased vocalization, improved head control, and interaction with the family. What a blessing, a joy, a complete experience of “normal” despite Harper’s physical limitations. Sadly, I must report that the seizures are now visible again, but… they are not as […]
The Challenge of Giving Wings to Harper’s Wish
How much time can we hope for Harper? With the passing of 3 CDKL5 children in the past three months, and after our own scares over the last four years wondering how long Harper would actually be with us, we decided she was deserving of a wish come true; a once-in-a-lifetime wish that we simply were unable to provide for […]
Run 4 Hope 2014: A Recap
ANOTHER FANTASTIC YEAR FOR CDKL5 and EPILEPSY AWARENESS Total Registrants 190 Total Raised $14,014.04 See Run4Hope Race Results HERE: Thanks to Movin Pictures your support was captured HERE: SAVE THE DATE FOR OUR 4TH RUN4HOPE: Saturday September 12, 2015 1 Mile Fun Run 7:30am 5K at 8:00am Andy Brown Park East THANKS TO […]
From Wishes to Hopes to What’s Next
“To wish was to hope, and to hope was to expect” -Jane Austen, Sense and Sensibility In our CDKL5 Info support group a sibling of a CDKL5-affected child has chosen to do a project on the disorder. She asked for those of us willing to expose our vulnerability and honesty to answer the following question: […]
With GG: From First Memories to Last Moments
“The life of the dead is placed in the memory of the living.” ~Marcus Tullius Cicero There are many first moments people experience at various times in their life. First birthday, first haircut, first tooth; first day of school, as many are experiencing this month, etc. There are a multitude of memories surrounding those first […]
No Seizures, But a New Challenge for Harper
A complication we thought we would never have with Harper: WEIGHT GAIN! Since age three Harper had hovered between 20 to 25 pounds, even with the use of the g-tube. We maxed out the fat calories in her diet (through healthy oils) and Harper still did not gain weight! She physically was not capable of consuming any more […]
CBD Hemp Oil for CDKL5 Seizure Relief: An Update
WE CANNOT IMAGINE LIFE WITHOUT THIS CBD PRODUCT! We lived with utter torture for nearly four years prior to finding CBD! HempMedsPx RSHO High CBD Hemp Oil is NOT a Miracle CURE but rather a LIFE CHANGING product for our family! What’s important to remember about Harper’s success with high-CBD hemp oil? Harper still […]
Communication Device for Harper: Tiring Fight, Final Battle
I Refused. I refused to take away (for the second time) Harper’s means of communication!!! I refused to return the eye-gaze device to Tobii. This time I drove to the congressman’s office and explained our situation in person. Please NOTE: The congressman’s office can only help facilitate a response from an uncooperative government entity. They […]
June: CDKL5 Awareness and 3 months NO Visible SEIZURES
JUNE IS INTERNATIONAL CDKL5 AWARENESS MONTH …and Harper starts it off with 3 MONTHS NO VISIBLE SEIZURES which is, in my opinion, thanks to the addition of Industrial Hemp Oil to her diet! Why Awareness? June 17th 2014 is CDKL5 Worldwide Awareness Day. Creating a meaningful level of awareness throughout the world is vital to those who live with CDKL5. […]
Hoarding 4 Hope Sale is Over, But SEAN Needs Your Help
Our donated store space is FULL….STILL! So today only, any donation Harper gets goes to help Sean, who is in the hospital as we speak, fighting Leukemia, and he is tired. PLEASE help us show our love to Sean. Every cent Harper earns today goes to him and his fight. LOSING IS NOT AN OPTION. […]