This is a seizure Raelynn had a couple weeks ago. Skip ahead to 01:35 if you just want to see the full video of the seizure.
Three things stand out to me about this video. First, I had to suction Raelynn at the beginning of the seizure because I noticed quite a bit of phlegm at the back of her throat, which can make her choke or aspirate if not suctioned. We suction only as much as we think is necessary, because suctioning too much can irritate the back of her throat. This seemed to me like one of those times when it was needed.
Second, you might hear my other kids talking during some of Raelynn’s seizures. To some people, that might sound a little weird, like they should be quiet and focused on helping Raelynn in some way. But the simple reality is that Raelynn has several seizures per day, and it’s just part of life for us. As long as one of us is helping Raelynn, everyone else can go about their business. They’re used to hearing seizures, and it doesn’t phase them at all. I hope that doesn’t sound insensitive, but for us, it’s just part of life.
Third, you’ll hear Abby and I talked about how Raelynn would have to miss school that day because of being tired after her seizure. It’s actually surprising how often Raelynn’s seizures don’t get in the way of her schedule. She’s usually able to do all the things on her schedule, no problem. But sometimes she’s just too tired to work.
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Here are a few seizures Raelynn has had throughout the years:
▶️ 17 months old: youtu.be/6BEdEB-OJXw
▶️ 18 months old: youtu.be/XhZMx7GHzBk
▶️ 21 months old: youtu.be/WXOeCJKECb8
▶️ 2 years old: youtu.be/om0LVyj74Xs
▶️ Almost 3 years old: youtu.be/pVMUT-pg0zU
▶️ 6 years old: youtu.be/EYNXrQSr9ug
▶️ 8 years old: youtu.be/GcIrDB5qkT0
A few playlists you may find helpful:
⏩ Seizures: youtube.com/watch?v=…
⏩ Tobii Dynavox: youtube.com/watch?v=…
⏩ Assistive Equipment: youtube.com/watch?v=…
⏩ Medical Procedures: youtube.com/playlist…
⏩ Living Life with Disabilities: youtube.com/playlist…
ABOUT RAELYNN’S YOUTUBE CHANNEL
Raelynn has epileptic encephalopathy, global developmental delay, cerebral palsy, cortical vision impairment, and I could go on and on. In fact, I’ll go on a little more. Raelynn is quadriplegic. She has a gastro-jejunal (GJ) tube through which she “eats” all of her food. She has a vagus nerve stimulator (vns), and is currently getting intravenous immunoglobulin (ivig) treatments to hopefully help with her seizures. She regularly wears a shaker vest, uses a nebulizer, and a cough assist machine to help her breath better, especially when she seems extra susceptible to aspirating on her oral secretions.
Raelynn’s been to the doctor more times than the rest of our family combined!
In this whole situation, if we were looking for hope in our circumstances, we honestly wouldn’t find much. Raelynn will probably always be in a wheelchair. She’ll probably always be fed via a food pump. She’ll probably never talk. And she has virtually no chance of getting better.
I can’t tell you how many times people have told me, “God can heal her.” I’ve actually come to find it a little funny when people say that (and I’m a pastor!). I know that God CAN heal her, and I know that God will heal her in eternity, but the point of life is not that we wouldn’t have difficult circumstances.
God is using Raelynn exactly as she is right now. I see how much I’m a better person because of Raelynn. I see the ways God has changed my family, the things He’s taught us, the people He’s put us in connection with, all because of Raelynn’s problems. When I see how much God uses her disabilities, I see that God takes the bad things, the hard things, the hopeless circumstances of our lives and brings beauty, goodness, and hope from them all.
That’s what this channel’s about.
We post videos of Raelynn’s life, seizures, and other disabilities to this channel three days a week (Monday, Wednesday, Friday).
If this sounds like something you could benefit from, please consider subscribing! Your subscription will help us keep making videos of Raelynn’s life and assistive technologies! ❤️