Ethan’s Journey

​it was a pleasurably Sunday. It was breezy but the sunshine kept us warm.  We puttered around, the dogs went on a few walks, chased away some geese, and enjoyed the warmth. I talked Paul into going to Wilson bay. We grabbed a few pretty and red rocks.we drove over there instead of boating. We like to get decorative reddish rocks and park them around camp because when it rains, they look really vibrant. We ended up taking the jet ski’s over to the island and hanging out. The island blocks any wind and allows the sun to be hot, so that cooling off feels good. We came back and ate leftovers. Since it was a bit windy, we sat outside listening to music with the dogs, but didn’t have a campfire.  It was a pleasant evening.

​This morning, the weather seemed “iffy”. It looked like rain was on the way according to the weather app. Luckily we had the benefit of the St. Lawrence Valley Channel. This makes it look like storms are headed our way, but the bypass is and travel up the St. Lawrence River. The river valley acts like a conduit steering the weather up the river.  A storm blew right by us with about 3 minutes of sprinkles. The dogs got several walks (as did I). Moe was a bit stinky so he got a lake bath and happily dried off in the sunshine. Paul and I took the jet ski’s out. We parked them close to shore and swam out to our neighbor’s boat. We enjoyed the still water and sunshine. We had a brief sprinkle and it passed. The water was warm enough to be able to jump in and not have such a cold shock where you flirt with a seizure. That might be dramatic but sometimes it is shockingly cold. We had a leisurely dinner and settled in for a fire. We watched the storms and rain going up St. Lawrence Valley...

​I woke up early this morning to drive to camp. I arrived around 8:30 am. Morning drives has so much less traffic. I did my work and shimmied in a few dog walks too.  I called the insurance company, as directed, and they said to not expect a number assigned to Ethan for insurance for at least another 5 days.  I was hoping what the lady said yesterday was true. If I could get Ethan’s number, we could provide it to the pharmacy to get his meds shipped. Darn! I tried. My Aunt and Uncle and myself went out to dinner at a local restaurant. It was quite busy, but then again, it was Friday night. We got seated quickly but I think our waitress was overwhelmed. She was not even half as good as the waitress the other night. Our meal was excellent. I also didn’t even have to make it and that somehow made it  more delicious. Paul had arrived by the time we got back to camp. We ended up have a nice fire. The lake was calm with very little breeze.  This is why we work so hard. Wor...

​After work today Avery and I drove to the Cheesecake Factory for my birthday dinner. We met my in-laws there.  Avery ordered an alcoholic beverage off the menu. My little adult baby. ❤️ Paul was mad that he forgot his reading glasses. He hates that he needs them and refuses to bring them in places that require him to read. He hasn’t accepted that this is a normal aging process and it is ok. He told me I was going to have to read him the menu. I started reading it to him and he became annoyed with that. He suffered through squinting and adjusting the length of the menu. Avery got a picture of him pouting about his eyesight while trying to read. She said his face stayed like that the entire time her read the menu. Our meals came and were delicious. Our waitress was amazing. She anticipated needs excellently, forgot nothing and was very personable. She also had a wonderful sense of style with the cutest phone cover and brilliantly artistic nails.  I put in a positive review for ...

​We got a letter in the mail yesterday dated 7/28/26 stating Ethan’s health care coverage ended on 7/31/26. Cool. Nothing like giving us a heads up. We need to refill some of Ethan’s medications. So it is kind of important. This is not the first time we have been in this situation. I call the number on the letter we received. I explained the letter and that he no longer had insurance. She told me he can’t apply for insurance because it wasn’t open enrollment and followed it with “is there anything else I can help you with?” Anything else you can help me with? You didn’t help me with anything. “Because his insurance has ended, doesn’t that count as a qualifying event?” I asked, knowing full well it did. “Yes.” Then there were crickets. I allowed her a moment to process. “He can go to the NYS website and plans start as low as $600/month.” That is more than he makes in a week. He certainly won’t be able to sustain paying for this. I started asking more questions and was transferred to som...

​I got the call today to set up a time for someone to come to the house Saturday to draw Ethan’s blood. What a cool perk of being part of a research study. I picked Avery up from the airport. She was able to go sight seeing today in Washington DC. She saw the Washington Monument and went to an art museum before hopping on a plane to go home. I got to work outside for a bit today. It was nice and cool in the shade. Moe is driving me nuts. At the islands, we walk a lot. I think he is getting cooped up. He asked to go out to lay in the sun about every half hour. I spent the evening listening to Paul and Ethan troubleshoot some issue he was having with the mower he bought. It sounded like a foreign language. Jiminy told me he would rather be cuddling in bed than listen to that boring stuff.  Jiminy and I snuggled in until Ethan came in and snatched him back. That little guy is so loved.

​ We got a note from the cardiology team that Ethan’s results from his research rejection testing came back a little wonky. Sometimes that can happen when there is an illness in the body or if there is rejection. He didn’t have an illness that we know of. This test is only slightly elevated. I am not too worked up about it. Ethan’s team would like him to have a repeat test to see what has happened over the last few weeks with the value. This test can only be done at the hospital. This is going to result in Ethan missing MORE work. I was annoyed for him. I had a few follow up questions around how that test would be scheduled, where can we go for that? Can we set up an appointment? How late can we schedule an appointment. My phone rang a bit later with an unknown number. My gut said to answer it. I normally don’t. Turns out, it was a man that wanted to assist in scheduling this for us. I explained that he worked from 7-4:30 Monday-Friday.  The man on the other end decided that he was...