If you’re observant, you may have noticed that I am posting this on a Tuesday instead of a Sunday like I normally do. Sunday night Stacy and I went out for a nice BBQ dinner to celebrate our 12-year wedding anniversary. James has been having a rough few weeks (or is it months) so we weren’t sure if we should go out or not. He seemed to be doing better so we felt comfortable leaving him with a babysitter for a couple of hours. We weren’t that far away so we could have rushed home if we needed to, but James was fine. I am glad I was able to give Stacy a little bit of a break from James. Over the past 7 years, I’ve noticed that it takes a lot to wear her down, but I sensed that she was at that point. If you’ve been following James for any length of time, you know that he can be a lot to handle, but Stacy is there day after day, night after night. While I can’t always be there to help her, I do my best to be there for her when she needs me, and give her breaks when she needs them.

Medical Stuff

James has been on this rollercoaster of having a high heart rate and digestion issues, then he seems better for a day or so, then his heart rate is back up again. We thought it was his tooth that finally broke through that was causing some pain and discomfort, so Stacy had been giving him Motrin to ease the pain. It’s been several weeks and we’re still dealing with the high heart rate. A couple of weeks ago the digestion issues returned along with his double breathing.

The interesting thing is that normally when he is double breathing, his sats are low and needs a bit of an oxygen boost. If you notice in the pic above, his sats (the red number) is 94 which is good. Because of his digestion issues, Stacy switched him over completely to Pedialyte to keep him hydrated. The next day he was doing better so she started feeding him half formula, half Pedialyte.

Last Friday is when I knew that Stacy was on the verge of a breakdown. She has told me that James is usually the worst in the morning and then kind of mellows out later in the day. Every morning, he goes through these crying fits. It aggravates the-you-know-what out of us because he is unable to communicate what is bothering him. We have no idea why he is so upset in the mornings, so we don’t know how to make it better.

We wonder if it’s seizure related. Could it be his brain switching on in the morning and just going crazy with seizures? Whatever it is it causes him to get really upset in the mornings, start to cry, and just gets him so worked up. Last Friday before I left for work, I caught Stacy crying right along with him. That’s when I knew she was starting to crack.

And it sucks, because I am supposed to be the one to support my family. Not just financially, but emotionally, too. But I don’t know what the hell to do. We need to figure out what is causing James so much distress, and then we can see if there is a way we can fix it. If it is these damn seizures causing all of this, then we need to find something to take them away. There has to be something out there. We do have a meeting scheduled with a local clinic to start the ball rolling on getting our medical marijuana cards now that it’s legal in the state of Illinois. Maybe that will be the cure we’re looking for. I don’t know, but we won’t know unless we try, right?

In other medical news, James got new wrist guards to help keep his wrists straight. They naturally want to curve in.

And here’s a pro tip. Stacy bought me one of those headlamps for Christmas for those times I am working on something and need some extra light and don’t have enough hands to hold a flashlight. I think she gets more use out of it than I do. She has been using it to change James’ diapers in the middle of the night, so she doesn’t have to turn on his bedroom light.

First Baseball Game

Last Saturday we took James to his first baseball game. Our town has a minor league baseball team, and they hosted a charity baseball game with former Chicago Cubs players playing against former Chicago White Sox players. We’re Cubs fans, but the Sox won. It was a fun time, and we think James enjoyed it.

Giving Back

A couple of years ago, Make-a-Wish built a pergola on the back of our house so that James could spend more time outside without being in the sun. They had a walk/run last Sunday to raise money to grant future wishes and we thought it was a good opportunity to give back.

https://wgntv.com/news/make-a-wish-alumni-give-back-so-the-wish-can-live-on/

This weekend we had a rather unfortunate opportunity to give back. Before I get into this one, I want to share a little disclaimer. When I first started this blog, I told myself that I was going to shy away from putting anything on here about other families—their struggles, loss of a loved one, fundraisers, etc. For one, I don’t think it’s right for me to talk about somebody else in a public forum that anyone can read. And as far as promoting fundraisers, I feel that if I promote one, then I have to promote them all, and the sad reality is that there are so many. I think everybody with a special needs child is struggling. Some of us more than others. We’ve been very fortunate and have received a lot of help over the years so we try to help others when we can.

I did make one exception to my rule when I talked about Jude’s passing, but I think that was a bit different. That one hit me really hard because he was so similar to James. I am going to make another exception here. One of James’ former one-on-one school nurses, Shannon, recently lost her mom unexpectedly. Shannon is a single mom of the cutest little boy, and her mom would watch him so that she could work. With her mom’s passing, Shannon’s world came crashing down around her. She has so much to try to figure out. They have set up a GoFundMe fundraiser for her to help with funeral and living expenses. If you can help out, please do. Shannon was like a second mother to James. We were devastated when we lost her as James’ one-on-one nurse, but she will always be considered family.

https://www.gofundme.com/f/weloveyousandy

A Friend’s Book

When we first found out James had a stroke in utero, we did a bit of searching online about what that meant and what we could expect his (and our) future to be like. We came across Jen Ortiz’s blog about Jude. Stacy became an avid reader of the blog and became friends with Jen and her husband on Facebook. After Jude’s passing, Jen decided to turn the blog into a book, and it is available for pre-order on Amazon. Stacy has already ordered one.