January 12th, 2019.
We woke up to a good eight inches of snow - perfect to go outside and play in! It started out as a normal morning. As Savannah was eating breakfast, we noticed that she seemed rather sleepy, her face was flushed but she had rosey cheeks. I picked her up from her highchair to give her some Tylenol and put her back to bed. As I was reaching in the cabinet, I noticed her head dropped and I thought she was just trying to cuddle really close. I looked down at her and then her entire body went limp - thank god I was holding her. Her body quickly stiffened up. And then she started convulsing. She wouldn't wake up. I knew in my gut it was a seizure, without ever seeing one, before so I quickly turned her on her side in my arms. Savannah's body was convulsing, she was completely unconscious, gurgling saliva, had completely stopped breathing and was a deep shade of blue. I ran downstairs, with her still seizing in my arms, and yelled at Brandon to call 9-1-1. Her seizure lasted about 2 minutes and 45 seconds. The longest almost three minutes of my life. Because of all the snow that we had gotten overnight, it took the ambulance even longer to arrive.
Once we arrived at Children's Mercy Hospital, she had her second seizure. She was admitted, to what was the longest and worst hospital stay we have ever had. They did a video monitored EEG (records brain wave patterns) and it came back "normal". Not even 10 minutes after removing all 20 electrodes, she seized again. The third time in less than eight hours. She was then diagnosed with epilepsy and immediately given an anti-seizure medication. She was also diagnosed with Ketotic Hypoglycemia.
We still do not know the cause of Savannah's seizures. She has had two sedated MRI's, as well as genetic testing on all three of us. She is currently taking an anti-seizure drug and has been seizure free since starting it at the hospital. Every day is a battle. If she makes a sudden movement, or doesn't move at all, my chest sinks to my stomach. The anxiety is overwhelming. The medication she is on causes extreme anger and outbursts. The ups and downs can be too much to handle,
I would take back that day if I could - I never, ever want to see my sweet baby go through that again.
We want to send our thoughts and prayers out to all the children and families that battle epilepsy every day.
Please join us in support of Savannah and her battle with epilepsy. We don't know how strong we are until being strong is the only choice we have.
Love,
Sarah, Brandon & Savannah
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The Seize the Day 5k & 10K Run/Walk will take place on Sunday, November 3rd and is a family friendly event which raises money to benefit the Epilepsy Foundation of Missouri and Kansas.
We need your help to continue the fight to stop seizures! 1 in 26 people are diagnosed with epilepsy and it is estimated to affect more than 250,000 children and adults in Missouri and Kansas. Please help us win the fight for people in our community that are challenged with seizures.
Register for the event as an individual or create a team to fundraise for the Epilepsy Foundation of Missouri and Kansas. Participants are encouraged to register before October 23rd to guarantee your shirt size. A limited number of shirts and sizes will be availalbe at packet pick-up and on race day.
We will have on-site registration available on race morning if you have any additional family or friends who would like to join us. On-site registration will open at 7:00 a.m. on race day.
Thank you for supporting the Epilepsy Foundation of Missouri and Kansas!
