This is a seizure Raelynn had a few days ago. Skip ahead to 01:23 to see it.
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I wanted to address a common question that I get in the comments. A lot of people wonder why we haven’t been able to get Raelynn’s seizures under control with medication. It’s a fair question, because I’m really amazed how much meds help a lot of people. We’re definitely not against meds. Raelynn has tried many, many medications over the years. Unfortunately, though, none of them have significantly reduced her seizures without also having major side effects. Clonapin, for example, is pretty effective in keeping her seizures away, but it makes her fall asleep. So she actually does take a small dose of Clonapin every night to help her get a good night’s sleep without seizures, but she only gets it during the day when she’s having a particularly bad day of seizures, like if she has 3 or 4 within an hour. Taking Clonapin at that point would help her body to stop having the prolonged clusters of seizures, but then she also would likely sleep for the rest of the day.
So there really is a balance when it comes to meds and Raelynn’s seizures. We don’t want her to have seizures, but we also don’t want her to sleep all the time. And I don’t think she wants to sleep all the time. She likes being watching Hallmark movies, and hearing her sister play ukulele, and talking with mom and dad.
Visit Raelynn’s website to learn even more! sunshinebaby.tv
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The links below show 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! ❤️
youtube.com/channel/…