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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 are currently working on Hope4Harper’s Seizure Research Project.
I also finally got the opportunity to meet Brandy Parker of My Epilepsy Story and many other amazing parents advocating for their children, some of which are no longer with us.
AES Detailed Conference Information
The 4 day conference was extremely emotional and I was overwhelmed with valuable information and connected with many new key people who hold pieces to Harper’s puzzle. As we continue to make progress on Harper’s puzzle our hope is that it will impact CDKL5 and others.
A bonus from this years conference:
I was able to stay with my sister who I have not seen in many months.
WAIT, THERE’S MORE! Harper Speaks!
While BIG things were happening for Harper in San Diego, BIG things were happening with her back home!! Harper made a new sound. Aaa-Oooh! It took a week but we discovered this is a word that means OUT! Yes, OUT! It is said intentionally, with purpose, and in the correct context; therefore, it is a word! When asked if she would like out she nods her head yes one time. When re asked for verification would you like to stay here she shakes her head no one time. EVERY MORNING, too early I might add, we hear this and when she is tired of being in her floor chair, high chair or laying on her pillow she makes this sound! When asked if she would like out she nods her head yes one time. When re asked for verification would you like to stay here she shakes her head no one time.