One year post-op

Aria wearing her Haleigh’s Hope shirt to spread the love down at CHoP!

It’s been just a little over a year since Aria’s last brain surgery, on September 3, 2015. They removed the rest of her right temporal lobe, additional sections of the right occipital and parietal lobes, and the right hippocampus in an attempt to reduce or eliminate her seizures. Her seizures were reduced, though they still negatively affected her from day to day, and her development was still thwarted by all the heavy medications. 

Three months after surgery we made the decision to trash the heavy meds, and try CBD oil to achieve the same seizure control, if not better, and help improve her quality of life. December 2, 2015 we entered the hospital once again for a V-EEG, to see what her brain activity looked like post-op, and to take her off of two of the meds (Trileptal & Keppra), and cut her Onfi dose in half prior to starting CBD. 

I had done about a solid month of research on the use of marijuana for epilepsy, how to obtain it, and who to trust to get it from for pediatric use. After numerous recommendations and testimonies, we settled on Haleigh’s Hope, an organic non-GMO oil made in Colorado by Jason Cranford and his amazing team. Six months after starting the oil, and after a hell of an interaction between Onfi and CBD, Aria was finally pharmaceutical free and THRIVING.

Let me repeat that, THRIVING.

Haleigh’s Hope has, and is, doing what five different high strength AED’s and a rescue medication couldn’t do. Aria went from (post-surgery), 20 seizures day and night, to an average of three subtle seizures a night, zero recovery time, increased attention, speech progression, play skills, personal care skills, etc. She can now identify the alphabet, count to 10 with number cards, identify colors, sort by shape and color, and finish sentences in her favorite books. How amazing is that?! From a developmentally behind zombie to a developmentally up-to-par sassy independent three-year-old!

With all my heart I believe Aria would not be thriving as she is if not for Haleigh’s Hope (and everyone in CO), and her amazing Early Intervention team.

Today we’re going down to CHoP for a 48 hour V-EEG to see what her brain activity looks like now with no AEDs and just CBD. We’ll then be able to compare her EEG from last December to this one, and see if there’s any type of change, whether it be positive or negative. I’m not holding my breath, I have a feeling there’s zero change besides the physical and developmental change we see, but we shall see!

Stay tuned 💜

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