Thanksgiving

 

Thanksgiving is a time to reflect on the past year and think about all the things we are thankful for. We have so much to be thankful for this year; hopefully I won’t leave anything out.

First of all, we are thankful for James’ health. He has a history of getting pneumonia and winding up in the hospital right after Thanksgiving. Thanksgiving was a week ago, and so far, he’s doing good. Fingers crossed it stays this way, but now that I’ve said something, I’ve probably jinxed it.

We’re thankful for his teachers, therapists, one-on-one nurse, doctors, and everyone else that is helping him overcome his many challenges and pushing him become the best version of himself.

We are thankful for the Make-a-Wish Foundation for building the pergola over our back patio. Now James can spend more time outside without getting too warm. We had a bit of an issue with the roof that we plan to take care of in the spring. Once the roof is complete, I’ll do a write up about the pergola with lots of pictures so you can see the process of it being built and what the finished product looks like. For now, I’ll just give you a little teaser pic:

 

 

We are extremely thankful (and grateful) for everyone that helped with or donated to our fundraiser. Because of all of you, we were able to buy a wheelchair accessible van which will make our lives so much easier. If you haven’t read it, here is a link to the article about our fundraiser and getting the van:

http://www.dailyherald.com/article/20140619/news/140618307

James got a new wheelchair last week and we had the opportunity to test it out in the van yesterday when we went to see Santa.

 

 

It’s so much easier to be able to wheel him into the van, lock the wheelchair in place, and go.  Before, we had to wheel him to the van, take him out of his stroller or wheelchair, put him into the car seat, strap him in, drive to our destination, and then reverse the process to get him out of his car seat and back into his stroller or wheelchair. Thanks again to everyone who made this possible.

I feel like I’m missing something else that we’re thankful for. If I think of it, I’ll come back and update this post.

 

Video EEG (VEEG)

James did his annual video EEG (VEEG) on Tuesday, Wednesday, and Thursday of last week, but instead of doing it in the hospital, we did it at home, and at school. While we think that doing the VEEG throughout his normal day-to-day activities is beneficial, it is so much more work for us!

We took him after school on Tuesday to get all of the leads put on and get all of the equipment. Here he is after we got home and got everything hooked up to start the VEEG:

 

 

His head is wrapped in gauze and tape to keep the leads in place. There is also a small box on top of his head (under the gauze) that all of those leads plug into. It may be hard to see in the pic, but there is a black wire that comes out of the back of his head. That wire connects the box that is on top of his head to the device that is on the table to his right. That device records all of the brain activity that the leads pick up. On the table to his left is the camera, which is the video portion of the video EEG. This camera continuously records him so that when they review the VEEG results, they can see if there are any movements that occur at the same time as any spikes in brain activity.

Carrying James and all of this attached equipment from one place to another was a pain in the ass. It required Stacy and I to work in tandem.

After a long day at school carrying around all of that extra weight on his head, this kid was pooped!

 

 

I’m not sure what the worst part of this VEEG was for James…having all of that stuff on his head or having to take it all off. Judging by this video, I’d say taking it off was the worst part:

 

 

Stacy did some editing of the video before she posted it, but here is what his head looked like before she took off all the leads:

 

 

After the leads are removed, there is always some glue that they use to attach the leads left behind and it’s really hard to get out. Stacy decided it was easier to shave his head that try to get all of that goop out of his hair:

 

 

We think—and hope—that the VEEG equipment captured a lot of seizure activity so hopefully the neurologist can use it to figure out what (if any) changes need to be made in treating these seizures.

 

Who’s Ready for Christmas?

Our Christmas tree and decorations are up. Purple tree for epilepsy.

 

 

 

 

 

Yesterday morning we went to the mall to visit the Caring Santa, who is a special Santa Claus for the kids with special needs:

 

 

 

 

Yesterday afternoon we went to a holiday party hosted by the organization that provides James’ palliative care. James made a new friend.

 

 

This weekend put us all in the Christmas spirit. All we’re missing is a nice little coating of snow. Not a lot, just enough to make it feel more like Christmas.