Due to the medical interest in how well David is doing with F.I.R.E.S., and in order to raise awareness of F.I.R.E.S., we have decided to add a video blog (which we will try to update once or twice a month) in addition to the written blog.
Because F.I.R.E.S. is such a rare disease with limited research, and even more limited, a positive and improving outcome after diagnosis, we think it is important to capture progress via video for several reasons:
1. So we can document progression/regression (hopefully not the latter) via video and literally see the differences as we adjust medication. When one is living in the midst of it, it can be challenging to see small differences, so video documentation will be beneficial when reporting back to David’s neurologist.
2. So medical professionals with an interest in David’s case can stay updated.
3. In order to raise awareness and answer questions about F.I.R.E.S. (from those with a medical interest, as well as friends and family).
When we returned to David’s primary care provider after he was initially released from the hospital, she was shocked to see how well David was doing, especially after reading his report from the hospital. She half expected him to be unable to walk and nonverbal. Despite the challenges we face on a regular basis, doctors consider David to be doing relatively well. As of now, there are still no signs of brain damage or atrophy- which is a miracle in itself.
If you have questions or comments, please feel free to leave a comment- this will help us with the content to cover in our next video.
Please keep in mind that we are not YouTube stars, and this is completely new to us. The videos are unscripted, and our attempt at being 100% transparent with our progress and struggles. In this video, David is relatively calm, so it is difficult to see the behavioral issues we face, but one can easily note the delay in cognitive processing.
Again, please be gracious with us, as we are not used to being in front of the camera.