Raelynn is medically complex and has many special needs. This is a day in her life; a day in the life of a medically complex child.
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Fun stuff Raelynn uses:
✔️ Galaxy Projector: https://amzn.to/3yQyR8x
✔️ Towel Warmer: https://amzn.to/3uIQioa
✔️ Travel Pillow: https://amzn.to/3pbsgRv
Must-have medical gadgets/supplies:
✔️ Fingertip Pulse Ox: https://amzn.to/3i92oEr
✔️ Forehead Thermometer: https://amzn.to/2SIQlD3
✔️ Oil Sheets: https://amzn.to/3uGceAk
Helpful accessibility things:
✔️ Wheelchair hook: https://amzn.to/3fFFkve
✔️ Gooseneck Tablet Holder: https://amzn.to/2SPYOEF
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00:00 Intro
00:28 Getting Dressed
01:07 Nebulizer Treatment
01:20 Cough Assist Treatment
01:33 Shaker Vest Treatment
02:04 Morning Meds
03:34 Oil Sheets
04:47 AFO’s
05:08 Continuous Feeds
05:24 Stander
07:07 Hair Brushing
11:45 Stretching
12:54 Afternoon Meds
14:07 Diaper Changes
14:28 TV Time
15:01 Family Time (Watching MrBeast)
15:53 Music Time
17:05 Evening Meds
18:34 A Day in the Life (Recap)
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! ❤️
https://www.youtube.com/channel/UCZn7hETm79vEeavluBxGrnQ?sub_confirmation=1
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#dayinthelife #medicallycomplex #quadriplegic