Thanksgiving, VEEG, and Getting Ready for Christmas

Thanksgiving

Three‑panel collage of James wearing glasses and a handmade paper turkey hat with colorful construction‑paper feathers, seated with a red cartoon neck pillow in an indoor setting.
Our little turkey

 

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:

 

Partially built wooden pergola attached to the house, with thick beams forming the roof frame over a concrete patio and James in a stroller beneath the structure, with a fenced backyard and trees in the background.
James under our new pergola

 

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.

 

James seated in a specialized wheelchair inside a vehicle, wearing a winter hat and dark jacket with neon accents, securely strapped in with supportive head and body components visible as the van interior and roadside view appear in the background.
First ride in the van in his wheelchair

 

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:

 

James lying on a floor cushion with head wrapped for EEG leads, surrounded by connected monitoring equipment on nearby tables, resting with a pillow and stuffed toy in a living‑room setting during an at‑home video EEG.
VEEG all hooked up

 

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!

 

James lying on a carpeted floor wearing dinosaur pajamas with head wrapped for EEG leads, resting beside a glass of water on a wooden surface during an at‑home video EEG session.
Tired from carrying the extra weight on his head

 

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:

 

James lying on a cushion under colorful blankets with multiple EEG electrodes and wires taped to his scalp, resting beside the monitoring device during the process of removing EEG leads in a home setting.
James’ head before removing the EEG 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:

 

James resting on a wooden table under a colorful striped blanket after a haircut, with freshly cut hair scattered on the floor below and nearby items like a phone, notebook, and water bottle visible in the cozy indoor setting.
Stacy decided it was easier to cut his hair than try to remove all the EEG glue

 

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.

 

Small purple Christmas tree decorated with lights and playful ornaments, including a sock monkey and ballerina, set on a red tree skirt in a cozy room with bookshelves and storage bins in the background.
Purple Christmas tree for epilepsy

 

Single‑story house decorated for the holidays at dusk with three glowing spiral light trees in the yard and bushes lined with multicolored string lights beside the front windows.

 

Inflatable monkey wearing a Santa hat and green scarf, holding a red‑and‑white candy cane on a front lawn decorated with Christmas lights near the house and bushes.

 

Five small spiral light trees topped with glowing stars arranged in a garden bed, set in front of an illuminated “Let It Snow” snowman sign as part of a festive outdoor holiday display.

 

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

 

James seated in a wheelchair wearing a gray Christmas‑tree shirt, surrounded by glowing blue and purple winter‑themed lights and artificial snow in a festive indoor display.
In the snow globe waiting for Santa

 

James seated in a specialized wheelchair in an indoor winter‑themed setting with falling snow effects and glowing ice‑blue lights, looking upward while an adult stands behind holding a black bag and a bright red bag hangs from the chair.
It’s snowing in the snow globe

 

James in a wheelchair wearing a gray Christmas‑tree shirt next to Santa Claus, set against a snowy winter backdrop for an inclusive holiday moment.
“Hi Santa. For Chrismas this year, I want…”

 

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

 

James and another child seated in wheelchairs indoors, James wearing a plaid shirt with a supportive hand on his head and the other child in a red‑and‑black striped sweater with medical tubing, holding hands in a quiet moment of connection.
Palliative care holiday party

 

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.