As promised, here is a monthly James update. Fortunately, it looks like it will be a relatively short post. I have transitioned from working remotely for about three months to going back to work and working nights. As a network guy, there is only so much I can do remotely. Since summer is the time when we do the majority of our upgrades, I have to be onsite to do a lot of the work. Working from midnight to 8:30 am has been a bit rough. It’s nice because there’s not many people there so my risk of contracting covid and bringing it home to James are minimal, but the work and sleep schedule is hard to get used to. I’m working when most people are sleeping, and sleeping when the sun is still out. Hopefully I’ll get used to it someday, but so far, it’s been pretty rough.

Health

James has still been dealing with his respiratory episodes. On June 21st he started to have some difficulty breathing again so we put him on 1 liter of oxygen. A nurse for palliative care stopped by the next day to listen to his lungs. She said that she could hear some congestion in right lung and a little bit on the left side as well. She placed a call to James’ pulmonologist to ask about getting a prescription for a steroid and an antibiotic. He agreed and started him on a 10-day round of both. We started the steroid that night and the antibiotic the next morning.

In addition to the antibiotic and steroid, Stacy was also giving him nebulizer treatments. A couple of days after being on the drugs and getting the nebs, Stacy started to wean him off of the oxygen to see how he would do. He did pretty well. There were times when he was fine without it, but other times he just needed a little oxygen boost. As of this past Tuesday he has been off of oxygen completely.

James had his one year post spinal fusion surgery checkup in mid-June and it all looks good. He is leaning a bit in the first picture. I was trying to hold him upright, but he started sliding. It’s funny how you can see my wedding ring and fingers by James’ neck in that first x-ray pic. You can also see the VNS in his chest in both x-rays.

Father’s Day

We stayed home for Father’s Day this year instead of getting together with Stacy’s family like we normally do because James had been struggling with respiratory issues. Even if he wasn’t having issues, I am not sure if we would have gotten together with family anyway. We don’t want to risk James getting covid. Besides, with me having to be at work at midnight Monday morning, I am not sure I could have gone anyway. I normally go to bed at around 2 o’clock in the afternoon. I was with my family, so I guess that is all that really matters. Someday this pandemic will go away (I hope), and we will be able to resume our normal family holiday get togethers.

4th of July

Seems a bit ironic that we had to celebrate our Independence Day in quarantine, doesn’t it? It’s a holiday where we celebrate our freedom, yet we’ve lost a lot of those freedoms. It does make you value our independence even more, though.

Miscellaneous Stuff

James’s one-on-one school nurse came over to hang out for a bit and go for a walk. We’re still really sad that she won’t be his nurse in the fall (assuming schools reopen), but we know she will always be a part of our lives.

One of James’ local fans went on a trip to Kuwait and brought him back a shirt. How cool is that?! I wonder if we should turn this into a thing. If you go on a trip, send James a shirt. Depending on how many people actually do it, we might right into an issue of having way too many shirts. Maybe postcards would be a better idea. We’d also probably have to get a box at the post office because we wouldn’t want to give out our address. We’ll have to think about this one.

We received James’ Extended School Year (ESY) kit in the mail. It included several books and a paper on “Common PreK Milestones”. Really? You do know he will be going into 6th grade, right? In all seriousness, though, we know that intellectually James is still at a PreK level. It just kind of rubbed us the wrong way.