Always have hope.
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…
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…
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…
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 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…
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…
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,…
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…
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…
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…