I wanted to give an update on how Raelynn’s seizures have been lately. She had a great week last week!
Also, I’m working a project about the prevalence of seizures! Check out these channels who have contributed to it!
👉 Steph (my life with tubes):
👉 Cassidy (Chronically Cassidy):
👉 Caitlyn (seizurefreejourney):
If you have seizures and would like to be a part of the project, please contact me via my website: ift.tt/3jdReeD
The jury’s still out on whether IVIG is really helping with Raelynn’s seizures. Sometimes it seems like it is, but then other times she’ll still have 5 to 8 tonic clonic seizures in a day.
Raelynn just recently got her third IVIG treatment, and statistically, this is the one that should tell us that it’s working. So hopefully we continue to see a decrease over the next few weeks.
👇 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! ❤️