Always have hope.
In this video, we answer the question, “What is refractory epilepsy?” Raelynn has tried many, many medications in the attempt to reduce or eliminate her seizures. Unfortunately, her doctors have come to the conclusion that she has refractory epilepsy (this is sometimes known as irretractable epilepsy). We also discuss various seizure treatments, including cbd and…
Raelynn had a bad seizure a few days ago. It started off very bad, but she eventually was able to rest afterwards. Website: hopeandsunshine.tv Instagram: ift.tt/2Pwxk52 Subscribe: youtube.com/channel/… 00:00 Intro 00:07 Video from today 01:51 Seizure A few playlists you may find helpful: ⏩ Seizures: youtube.com/watch?v=… ⏩ Assistive Equipment: youtube.com/watch?v=… ⏩ Medical Procedures: youtube.com/playlist… ⏩…
We often get video of Raelynn having a seizure in bed because this is the safest place for her to have seizures. Her bed is soft so there isn’t anything that could potentially hurt her if she were to hit it while having her seizure. Website: hopeandsunshine.tv Instagram: ift.tt/2Pwxk52 Subscribe: youtube.com/channel/… 00:00 Intro 00:05 Walking…
Raelynn has many disabilities, so this is a special needs child bedtime routine. Raelynn’s bedtime routine includes her breathing treatments, some therapy, and of course her meds. Website: hopeandsunshine.tv Instagram: ift.tt/2Pwxk52 Subscribe: youtube.com/channel/… 00:00 Intro 00:25 Breathing Treatments 02:04 Meds & Food 05:40 Hand Splints 07:18 We’re Not Perfect 07:41 Goodnight! A few playlists you…
Raelynn is a medically complex child. That being the case, she has several daily routines. She has several medically necessary assistive technologies, such as a nebulizer, cough assist, and shaker vest every day. Her care is complex. She also has seizures every day. But as our child, she also just lives life as a part…
Raelynn had a seizure in her wheelchair that needed suctioning. Her wheelchair isn’t the safest place for her to have a seizure, since there are hard bars that her arms could hit. But she was okay during this seizure. When she’s in her chair during a seizure, it’s even more important for us to monitor…
In this video, I explained why and how to use a shaker vest. I then proceed to show a full shaker vest treatment. Raelynn uses a shaker vest to help her breathe better. I explain that a shaker vest treatment loosens mucus that may be in her airway and/or lungs. Website: hopeandsunshine.tv Instagram: ift.tt/2Pwxk52 Subscribe:…
Mindflex is a game that Raelynn can play well with others, because she doesn’t need to use her hands, eyes, or mouth at all! Today, she challenged a friend! Go check out his channel! Lightspeed: youtube.com/channel/… Website: hopeandsunshine.tv Instagram: ift.tt/2Pwxk52 Subscribe: youtube.com/channel/… 00:00 Intro 01:48 Playing Mindflex 05:10 Breathing treatments 06:38 A little talk 07:25…
Raelynn usually has at least one or two seizures at nighttime, right as she’s doing to bed. We often call them her “bedtime seizures.” That hasn’t changed, but she is doing much better breathing. Her breathing treatments have been very helpful! Buy a t-shirt: ift.tt/3su8CAb Website: hopeandsunshine.tv Instagram: ift.tt/2Pwxk52 Subscribe: youtube.com/channel/… 00:00 Intro 00:14 Breathing…
We’ve tried a few tablet holders so that Raelynn can watch shows on her Kindle in bed. Some of them are clunky and hard to use. But the Lamicall Gooseneck Tablet Mount is easy to use and versatile. As far as we can tell, it’s the best tablet holder & flexible arm stand available! Buy…