VNS
We took James to the neurologist on Thursday to further discuss the VNS (vagus nerver stimulator). The neurologist pulled up James’ last VEEG for us to look at. He pointed out all of the spikes and where they were coming from. Because the seizures are coming from many parts of the brain, the doc told us that surgery is not an option and recommended that we think about trying the VNS.
Prior to the appointment Stacy and I had pretty much already made up our minds that we were going to do it. James has been having so many seizures lately and they’re starting to affect his therapies. Sometimes he will have a couple of them back-to-back, and then nap through his therapy sessions. Hopefully this will be the miracle cure that we’ve been looking for the past couple of years. All of the other drugs and treatments we’ve tried so far have failed. We’re hoping to get the VNS placed sometime later this month or in early September.
Fundraiser
Our goal for the fundraiser was to raise $10,000 by August 29th (James’ birthday) to put towards a van. We’re not quite halfway there yet, but we’re okay with that. We’re overwhelmed, and feel extremely blessed, with all the support we have gotten. I’m not just talking about financially, either. The kind words, the comments on posts on James Facebook page, the calls and texts from friends and family. All of it. In a world where it seems like everyone only cares about themselves, it’s nice to know that there are still kindhearted people out there. Thanks to all of you that have made some sort of an impact on our lives.
https://www.indiegogo.com/projects/let-s-get-james-a-new-ride#/
A friend had this poster printed up and hung it at a train station outside of Chicago:
A Good Book
Stacy has been reading a book called “A Different Kind of Perfect: Writings by Parents on Raising a Child with Special Needs”. It’s filled with stories from other parents who are going through a lot of the same things we are. As she was reading the other night, there was a line that just hit her:
“We just need to do what we can, we can’t do more than that.”
As she read that line out loud, it hit me, too. I can’t tell you how many times Stacy and I have talked and questioned if we were doing enough for James. I’m not sure about Stacy, but there are times I lie awake at night and wonder if there is something more that we should be doing. We just want to do everything we can for James. We know he won’t have a normal life, but we will do everything we can to make it as normal as possible.
