Happy New Year

How’s your new year going so far? Let me show you how ours started. One of Stacy’s clients had given her a bottle of champagne as a gift for the holidays. We opened it on New Years Day and, well…

After we popped the cork, champagne shot out of the bottle like a fountain. I think half the bottle wound up all over the floor. Fortunately, there was enough left to pour ourselves each a glass, and toast each of you, James’ fans. It’s been a long, and often rough eight years trying to do the best we can for James. The doctor appointments, the surgeries, the emergency trips to the hospital when he’s having respiratory issues. Wondering what his future holds while sometimes hoping he just makes it through the night.

But if it wasn’t for James’ struggles, we would not have met so many awesome and generous people. Even if we’ve never personally met, if you’ve donated to the medical fund, or for the van in 2014, or if you’ve just left a few kind words on a Fans of James Facebook post, you, too, are awesome. We can’t thank all of you enough for everything you’ve done for us over the years. So, here’s to all of you…Cheers! May your year ahead be a good one.

Gifts for the Kids

A few years ago, Stacy had an idea. Instead of the adults exchanging gifts for Christmas, we’d collect toys for the kids at our local children’s hospital where, unfortunately, James has become a bit of a regular patient. On January 3rd, Stacy, James, my sister, and her kids stopped by the hospital to drop them off. One of James’ favorite nurses was there, as well as his preschool teacher who volunteers there.

Play Date

This should tug at your heartstrings a little bit. It did mine. I want to share something that Stacy put on Facebook a few days ago. This is what she wrote, almost word for word. The only edit that I made was replacing the boy’s name with “son”.

“As I lay here trying to wind down from a long day, all I can do is smile. I am so blessed to have such wonderful & amazing friends. One of my friends sent me a message telling me that her son (older & typical) wants to have a play date with James. I asked what does your son have in mind and I quote “he feels bad because he wants to play with James but he doesn’t know how.” So we had a discussion about how he could bring his basketball cards and show them to James and tell him about them, or even Pokemon cards and such. Or he could read a book with him.

I love this!! So her son is coming over Saturday to hang out with James. I will make sure to snap a picture or two. You raised an amazing kid & we are very lucky to have met.”

~ Stacy

He came over yesterday and they watched Cars 3.

This made me feel really good. James obviously can’t ask other kids to hang out so it’s nice that other kids offer to hang out with him. And the fact that the mom didn’t ask her son to go hang out with James and that he took it upon himself to do it makes this that much more special. Like I said earlier in this post, we’ve met a lot of awesome people because of James…kids included.

Longest Doctor Appointment Ever

We have reached the halfway point of the seizure drug study that James is in, so on Friday James had to do a video EEG (VEEG), bloodwork and an EKG. The same stuff he had to at the beginning of the study. I don’t remember the first time being so long, though. Seven hours. Seven. We were at the hospital for seven hours. Add in the travel time to and from the hospital and it was a nine-hour day for us. James was a trooper though. He rarely complains…except when they’re taking the EEG leads off of his head. I don’t know if it’s painful when they take them off, or if it’s the strong smell of the stuff they use to take the leads off. Maybe it’s both.

Here’s a picture of him getting the EEG leads put on and then wrapped in gauze to hold all the wires in place. The sunglasses are to protect his eyes from the lights. He doesn’t know how to close his eyes or blink so we have to think that staring at the bright lights in the ceiling have to be hard on his eyes. He also looks pretty cool with the shades on.

With the flu epidemic going on, we’re taking bets on which one of us gets sick first. Anybody else want to get in on the action? We’ve all had our flu shots so hopefully none of us will.