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. 

WEEK ONE THERASUIT 4 HARPER, CDKL5 THERAPY

One week down….Two more to go!!  Harper did FABULOUS with the Therasuit Method!!  I wonder, am I supposed to be this tired when I’m not the one who did the three hour workouts each day? 😉 It was a great week here at Little Tesoros that started full force on Monday with isolated muscle exercises that […]

TheraSuit Therapy 4 CDKL5

You never leave someone behind, you take a part of them with you and leave a part of yourself behind.  Whenever I’m away, I give Lily a pink heart to sleep with and she gives me a tiny purple heart to carry! Days when I have to leave for the benefit of Harper are very […]

Destiny

Let me paint you a picture…. A young man, in his Senior year of High School, at the last baseball game, steps up to the base for the FINAL PITCH!  The pitch that in his mind sets the direction of the rest of his life in motion. Mr. Destiny What is this movie about?  Choice […]

CDKL 5 – To Be Seizure Free

The Mice Could Be Seizure Free RESEARCH HAS ALREADY BEGUN AND THERE IS SOME INTERESTING NEWS THAT IMPACTS THE DIRECTION OUR SEIZURE RESEARCH PROJECT. A knock-out mouse model of CDKL5 (meaning the CDKL5 gene is disrupted in the mouse’s DNA) was created by Dr. Zhaolan (Joe) Zhou at the University of Pennsylvania. Read more details […]

Video of Harper Using the Tobii Eye Gaze Communication Device

Here is Harper Using the Tobii Device We have always believed in Harper’s abilities and skills. What a blessing it is to see her in action! She will be able to use the Tobii on loan for 30 days starting next Monday! The first video she is asked to find a ‘quack’ from the cartoon […]

Finding the Balance with CDKL5

“Mommy, I had a dream you went to heaven” On the way to school Friday morning, Lily starts a discussion on dying and an empty world.  I’m seriously glad I have at least 15 minutes to direct this conversation.  I’ve learned you have to be ready when they are to maximize your power of influence […]

BEAUTIFUL CDKL5 EYES

TODAY WAS AN AMAZING DAY!! A day Harper has been waiting a year to experience…. TODAY HARPER HAD HER DIGITAL EYE GAZE COMMUNICATION DEVICE TRIAL!!! Thank you Easter Seals North Texas,  the Retina Foundation, and Pediatric Opthalmology P.A., PlayWisely and many other individuals who believed in Harper’s abilities for helping to make this possible! What an awesome experience to […]

CDKL 5 WISHES for 2013

I’m sorry that I’ve been absent a few days…. with no New Year pictures to post.  The seizure news from the doctor on New Years Eve had me very appreciative of his willingness to spend time on Harper’s case and notify us immediately, but left me very down about the results. Then I caught a […]

2012: a CDKL 5 Year in Review

Dear Supporters: We want to thank you for all you have done in helping us get closer to reaching our $200 thousand dollar goal for the Seizure Research Project.  Thanks to your generosity we have funded almost ¾ of the project.  The remaining $60 thousand is due by December 31, 2012.   Over the past […]

AES 2012, CDKL5 and Epilepsy!

ORDER YOUR HAM4HOPE NOW (CLICK HERE)!   Thank You Daddy and ALL the grandparents for making this trip possible.  Without you there is just no way I would have been able to go.  I recently attended the American Epilepsy Society Conference in San Diego, CA where I connected with Dr Jensen and Joci Lippman who […]