I have several updates I want to share in this video! And I thought I’d let you see this cutie fall asleep while I go through them.
00:00 First Update: Less Seizures!
00:34 Second Update: Online Store!
00:50 Third Update: Mini Documentary!
Order a t-shirt or hoodie!
Contact me if you want to colab!
First, for the last 9 days, Raelynn hasn’t had more than two seizures in a day! This is a big deal! Raelynn has always averaged like 5 seizures a day all of her life. Of course, we don’t know the future, and Raelynn definitely sometimes has good weeks and bad weeks, but let’s just be happy with her for 9 great days!
Second, I want to share that I set up a store on Raelynn’s website! Check that out here: ift.tt/32PO4r1
Last, I’ve been working on 10 minute documentary style video about the prevalence and experience of seizures, along with a message of hope. I’m really hoping to release it on Monday. So if you have seizures and would like to colab with me on it, this is your last chance! All I need from you is a 30 second video about your experience with seizures. Contact me (ift.tt/3gQLupG) and I can let you know how you can do that. But if you don’t want to be in it, I’m really counting on all of you to share that video to raise awareness. I think it has the potential to really help people.
Visit Raelynn’s website to learn even more! sunshinebaby.tv
👇 AND PLEASE SUBSCRIBE if you find this content helpful.
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! ❤️