This is a seizure Raelynn had late last Wednesday night. She often has a seizure late at night. We called it her “bedtime” seizure because it’s the one that often puts her asleep for the night. It may feel weird to “like” a video such as this, but it really does help us keep making…
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A seizure from Sunday // plus an update on Raelynn’s seizures
Following Raelynn’s seizure on Sunday afternoon, I wanted to give an update on the frequency of Raelynn’s seizures lately. 03:04 – Seizure Update It may feel weird to “like” a video such as this, but it really does help us keep making videos of Raelynn’s life with seizures, which helps many parents who are going…
How do GJ tubes work? // How Raelynn eats using a feeding tube
In this video, I show how Raelynn’s feeding tube works. Raelynn eats all of her food through her feeding tube, called a gastrostomy-jejunostomy tube (or GJ tube for short) 👇 PLEASE SUBSCRIBE! It will help Raelynn keep making videos! 👇 youtube.com/channel/… Raelynn doesn’t have a great digestive system. She struggled to eat enough calories by…
Does Vagus Nerve Stimulation help with seizures? // Raelynn’s VNS
In this video, we talk a bit about Raelynn’s Vagal Nerve Stimulator (VNS) and whether it helps her with her seizures. 👇 PLEASE SUBSCRIBE! It will help Raelynn keep making videos! 👇 youtube.com/channel/… Whenever we observe that Raelynn is about to have a seizure, we scan her Vagal Nerve Stimulator with the magnet we were…
Raelynn’s seizure in the hospital // example of a grand mal seizure
Raelynn had a seizure at the hospital each day this week she was getting IVIG treatments. I wasn’t able to record the one she had the first day, but this is the one from the second. It’s an example of a grand mal seizure (also known as tonic clonic seizures). It may feel weird to…
Getting IVIG Treatment // Intravenous Immunoglobulin therapy may help Raelynn’s seizures!
Raelynn received Intravenous Immunoglobulin (IVIG) treatments this week. They will hopefully help with her seizures! 👇 SUBSCRIBE to find out if this treatment is effective! 👇 youtube.com/channel/… There is some evidence that IVIG therapy has helped some people with epilepsy to reduce or eliminate seizures. So we went to the hospital the last two days…
Another seizure from yesterday // Raelynn’s second seizure that day
Here’s a video of one of the seizures Raelynn had yesterday. She ended up having just two seizures yesterday, which is on the low end of a normal day for her. This was the second seizure she had, which she had around 7 pm. It may feel weird to “like” a video such as this,…
A seizure Raelynn had // first seizure of the day
Here’s a video of one of the seizures Raelynn had yesterday. She ended up having just 2 seizures yesterday, which is a pretty good day for her. This was the first one that she had, which she at around 2:30 pm. It may feel weird to “like” a video such as this, but it really…
Benik Hand Splints // how we put them onto Raelynn every night
This video shows how we put the Benik Hand Splint onto Raelynn every night. It’s a simple hand and wrist splint that helps her range of motion. 👇 PLEASE SUBSCRIBE! It will help Raelynn keep making videos! 👇 youtube.com/channel/… Raelynn hasn’t always done the best wearing it. For a long time, she didn’t like it…
Raelynn having a seizure // followed by heavy breathing
Here’s a video of one of the seizures Raelynn had yesterday. She ended up having 3 seizures yesterday. This was the last one, which was her “bedtime” seizure. It may feel weird to “like” a video such as this, but it really does help us keep making videos of Raelynn’s life with seizures, which helps…