Team Remyngtyn

11/26/2025

Read the caption. 🫶

11/25/2025

This is the surgery that Remyngtyn is and has been evaluated for multiple times. We have paused for now on this as we explore other options.

How it works: Small probes are placed deep in the brain. This requires surgery that involves going through the skull and brain tissue. The probes are programmed to deliver electricity to areas deep in the brain. By stimulating this area, the brain activity changes in a good way- seizure activity can be reduced. Like the Vagus Nerve Stimulator, the Deep Brain Stimulator is programmed to stimulate at a pre-programmed set time. For more info. continue to link: https://my.clevelandclinic.org/health/treatments/21088-deep-brain-stimulation?fbclid=IwY2xjawOShHRleHRuA2FlbQIxMABicmlkETFaS0xjZUxkbWlUdUk3eHlvc3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHlP87fiXQG4w01omIqL__EEHXsvng5Kn_cC5IT5k3_QzhkoyNQub7MMLBGHu_aem_Gg09tw23DFCB1_a6TRRBvQ

11/25/2025

I have been approached by several individuals seeking guidance on Christmas gifts for the children. To facilitate this, I have compiled a list for all three kids. It is worth noting that the bowties are specifically designated for Remyngtyn, who exhibits a keen fondness for wearing them. The Christmas season can be particularly difficult for medically complex families, as many of us have made significant sacrifices, including relinquishing full-time jobs and careers, to provide care for our children. While we would not trade this experience, it undoubtedly alters our Christmas celebrations. If you are considering purchasing a gift from the list, I offer my heartfelt thanks.

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11/25/2025

Tonight broke our 37-day seizure-free streak 💔, and this one feels different from the previous ones; it hurts. It's hard to explain what I mean by hurts. This is the longest period we've gone without a seizure in two years, and we had begun to feel a sense of normalcy, although we were aware that this was a possibility, even with the new medication. We will restart our clock in the morning and prepare to celebrate Thanksgiving this week, giving thanks that it was short-lived and didn't require emergency medication or a hospital trip.

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11/25/2025

🫶 yes I did. Everyday he shows what a hero truly is.

11/25/2025

11/23/2025

11/23/2025

In recognition of Epilepsy Awareness, numerous global landmarks turned purple, which Remyngtyn always loves to see. Please if you have more to share feel free 💜🫶

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11/23/2025

Oklahoma City is going All In for National Epilepsy Awareness Month! How is your local community supporting epilepsy awareness? Tag us in your posts and share your thoughts below in the comments!

11/23/2025

Caring for a loved one with epilepsy takes time, energy, and patience. It also requires caregivers to take care of themselves. This National Family Caregivers Month, we’re sharing practical ways to prevent caregiver overload and support a healthier balance for families.

Share your own tips in the comments and explore more resources here: https://www.epilepsy.com/tools-resources/forms-resources/wellness-tools?utm_campaign=wellness&utm_source=facebook&utm_medium=social&utm_content=1763343840