Epilepsy Blog Relay™: Randi on Sonya’s Story

This post is part of the Epilepsy Blog Relay™ which will run from November 1 to November 30, 2017. Follow along!

Excerpt from Sonya’s Story

Within the next 2 weeks or so our little bear is going to become a big sister. I am eager and excited about this new addition to our family, yet I have not even packed my bag. (Full disclosure, I packed for Sonzee while in labor and running out the door). I really am looking forward to everything that comes with having a newborn baby, but despite the typical massive amount of pregnancy hormones circulating within my body, there is a cloud of guilt and sadness hanging over me. I do not want to assume everyone who follows Sonya’s Story understands the needs of a child like our dear Sonzee bear. I do not want to assume everyone knows how much care she requires. I try not to mention the sleepless nights encountered due to her constant alarming pulse oximeter letting me know her heart rate has skyrocketed (or on some occasions her oxygen has plumeted) and she is having another seizure. She is dependent on every level. She is unable to be left alone, she has to be buckled into swings and bouncers at all times. She is unable to be placed on the ground in a seated position “for just one minute” so something can be grabbed. She is unable to feed herself, and in fact in her case, her food bypasses her stomach and goes directly into her intestines so she doesn’t eat in the typical fashion. Her tube feedings are prepared in advanced and placed in the fridge and refilled periodically throughout the day and the night due to a continuous 20 hour a day feed. She requires medications, patching, and various position changes throughout the day on top of the daily needs of a child. Her needs are that of a newborn baby, in all ways, literally.

Read Randi's Post

NEXT UP: Be sure to check out the next post tomorrow by Dave at http://www.epilepsydad.com/. For the full schedule of bloggers visit livingwellwithepilepsy.com.

TWITTER CHAT: And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET.

Jessica K. Smith Founder and CEO; Executive Director

Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world.

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