Ethan’s Journey

​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...

​Today was less that stellar weather wise. My friend and her family went home early and I decided to as well. It was pouring. Might as well be driving. I could use the extra evening on Monday night to meal prep. I have lots of veggies to roast and chicken to cook. There are slim Pickens for the boys. After our company left, Paul and I got the camper ready for next weekend. We like to clean, vacuum and make sure all the trash is out of there. I made up the bed with fresh clean sheets. Paul left a few hours before I did. He took Ferguson and Jiminy. I called him to remind him that Neither one of those dogs should be sitting on the seat on the ride home. If Paul breaks too fast they could go flying. He had put them on the seats not even thinking about it. We could have dodged a bullet with that. I stopped at Wendy’s on the way home. Terrible idea. My stomach didn’t really care for that meal! Avery made it to Washington DC for her AAPT conference. The conference focus’s on specialized clas...

​it was a little cloudy this morning. We had coffee by the lake, did rock painting, a few walks up the road. By noon, we had an elegant mixture of snacks for royals. Yum.  I got out the Ninja slushie machine and made virgin slushies for the kids. Craig and Lois went on a road trip. I took care of Maggie and Mindy while they were away. They got a nice few long walks and some outdoor time as well. Craig was nice enough to let us take his boat out. We went over to the sandy bottom beach. It was busy over there. By this time the sun was out, the air was warm and humid. Sarah would not have been pleased with all the spiders that have crawled on me today. We took the kids in swimming and I was looking for rocks with them. We found some cool rocks. The kids fell asleep on the way back. It was a brief 6 minute nap. These kids are machines. They hold it together the majority of the day without a nap. My kids couldn’t handle that when they were that age. Avery discontinued her naps the week ...

 Today I played the game of is that my hair touching me or a spiderweb, bug or spider. I was on a call at one point, looked down and saw a ginormous spider on my leg, screamed and punched it (myself) resulting in the lady asking me “is everything ok?” I looked like a drug addict with my flailing arms, punching myself and yelling out like a dying duck. “Everything is fine, Donna.” I faked! 😬 I rotated the dogs outside today. I really enjoyed seeing old man Ferg sunbathing himself. He had a smile on while napping happily in the sun. Our friends made it to camp with their two young kids. The kids very much remind me of Ethan and Avery. They find joy in little things, they are smart and can carry on a wonderful conversation. I learned all about Godzilla. I found some glow sticks and broke those out. They were a hit!  The men got into the Natty Daddy’s and will remember nothing by morning. It was a good campfire. I love weekends. I like forgetting work and just existing in the mom...

Ethan was filling out paperwork today for a possible apprenticeship that he may try. He is not sure he will be able to do it because it is quite labor intensive. With his extra bills of medical costs and paying back SSI, he has to make work a priority.  The trouble is he looks healthy. He is not 100%. He has stage 3b kidney disease. He is tired all the time. Adding classes on after work for 4 days a week may not be sustainable. He signed up to regardless. I told him that worst case scenario is that he has to discontinue. He is frustrated and feels stuck. It is a very tough spot to be in for me and him. I wish I could make it all go away for him. I wish you had super powers to heal him and make him feel normal. ​I went to go pick up groceries today. When I pulled into my spot, I opened my door on the drivers side and headed around to the trunk. I left the drivers side door open.  The grocery lady came to load my groceries. I was helping her. I bent over to grab some sparkling w...

​Ethan had his dermatology appointment today. He doesn’t mind these appointments because they seem to go quick. He has to go every 6 months forever.  He likes me to go to these appointments as a second set of ears. His rejection medications significantly increase his chance of developing melanoma, basil cell carcinoma and squamous cell carcinoma.  She goes over his body with a light and magnifying glass. Last time they removed a “spot” that was suspected of potentially being cancerous. He left work two days in a row early. Likely putting him under the $25 per week that he made over the threshold for full medicaid coverage. Good grief! He has had a good week with his dentist appointment and dermatology appointment walking away with good news. He needs good news. No suspicious spots today! Yay! Work today felt like babysitting. I sent out several emails to people that weren’t doing what was expected of them. Please just do your job so I can do mine. Is that too much to ask? Sara...