Ethan’s Journey

I woke up this morning crabby. Not about any particular thing, but just feeling grouchy. As the day progressed more and more things became glaringly annoying. Sounds, smells, gossip and even day to day friendly chatter was pushing me over the edge.  I don’t like feeling this way. I can’t even stand myself. I almost think I just haven’t had enough down time to properly recharge my introvert batteries and it is putting me in a tailspin. I kept finding more and more things to negatively grump about. Then I asked myself…..what was ANY bright side today? I was even annoyed with my own question. Who even cares? Refocused on not wanting to feel this way, I posed the question again to myself.  It was as I was driving home from dropping Avery off at a school function that she was excited about. It is homecoming weekend. Tonight was the powder puff. The girls dress up in football gear, the juniors against the seniors.  The boys dress up as cheerleaders and cheer the players on. They also put on

Today was my day off. I spent the morning trying to deal with our continued billing/ insurance/ collections issue. Lots of phone calls but there has been some progress so that is good. I was finally able to file a ton of paperwork. I spent at least two hours sorting and filing. I picked Ethan up from school, went to lunch. At lunch we got into a great conversation about human behavior, how we as people should always continue to refine ourselves into who we would like to be. Watch the behavior of others we find unfavorable and work on how we can avoid those mannerisms. We also talked about people that are unwilling to accept that they may need some self improvement and how it hurts them, but we have to accept their choice not to improve.  We got so involved in our hour long chat that we were almost late to our appointment. We arrived thankfully on time but not many seconds to spare. Got to see my BFF dialysis nurse.  We also were visited by the nutritionist. She walked in, said “your nu

Ethan had lab work done. Finally, we are in a therapeutic range with Ethan’s rejection medication.   Ethan gets to have a lab work break for 16 days. Wow! I think that is the longest break in 10 months. Wow! Ethan’s anemia is resolved. His body LOVES and appreciates the iron infusions. Last week Ethan’s neutrophils (his soldiers of his immune system) we quite low. It put him at risk for any hint of a virus to completely take over his body.  His neutrophils have come up, and while still low, are not in as much of a danger zone. His platelets, while still making a slow army crawl toward the normal range. This bloodwork to me was wonderful! His transplant team as well as hematology are glad he is headed in a good direction. Ethan feels good. He is eating. He is gaining stamina. He is able to juggle more things he wants to do.  Today I got in touch with my BFF dialysis nurse.  Ethan posed me a real problem this evening. I use a formula that takes Ethan’s current weight and subtracts it fro

 After a couple of phone calls today, I am hoping that we may have made progress on some of our insurance claims. Not huge progress but progress is still progress so I will take it. We are solidifying our trip for Ethan’s first “annual” heart catheterization and biopsy next month. It will be a month early but fingers crossed, we will continue to have good news. Ethan has been quite upset with the current health care crisis. He hates that the people that worked so hard through the pandemic, are now losing their jobs. His plea is that if you have to go to the doctor or are around any healthcare worker in any capacity, please be kind to them. Thank them for coming to work.  Ethan went to his Co-op today and we spent the entire car ride talking about the frustrations of politics, we discussed his beliefs and mine as well, even though they aren’t exactly the same.  It was a nice discussion, but I could tell he was dedicating more energy to being upset about the things he can’t change, than

What a beautiful fall day. The colors were vibrant, the weather was not humid or sticky. E Han and I did his dialysis in the middle of the day today. He was a bit wiped out afterward but still wanted to go to the pet store afterward. He likes looking at the bearded dragons. I like looking at the ferrets. Too bad they smell so bad. Avery bought some fresh plants for her fish tank. We all did some form of work today. Food prep, stacking wood, doing things to ones car, and my mini me worked her butt off at the pumpkin patch. It is so cute there. I also got to mow the field. Paul saved it for me. I had Penny with me and she ran so much in the field, her legs were grass stained. What a silly dog.  She is all tired out right now. Good night all. I am tired

Avery worked today. She is so cute. I dropped her off at her new job and then proceeded to check tasks off my list of things to do. One of the things that wasn’t on my list today was to support the local Hilton Food Shelf.  My mom helps the food shelf and has done a great job of setting an example of giving back to the community through her church as well as through the food shelf. At her church, she has spear headed Undy Sunday several times, helping our community get things like underwear, things most of us take for granted. I want to be helpful within the community. I took it as a sign when I went into the grocery store, that I needed to purchase the things on the list, that one of the food shelf volunteers handed me. I don’t normally shop at that particular store and so I felt like I was placed there to help. I carefully picked out items that may be less likely to be purchased by others. Dish detergent, clothes detergent, tooth paste, paper towels, shampoo, deodorant. How do you st

TGIF! Fridays can be hard to get through. I am tired from the crazy week and mentally exhausted usually too. We have dinner with family which was so delicious and comforting. When I got home from work, I made a list of things for me to accomplish this weekend. It is a tough list but I will try my best to cross all the boxes off. I finally was able to gather all the appropriate documents, medical history for SSA. They sent me a pre paid envelope to return the pile of paperwork that is as thick as a phone book in. I ended up braking the envelope on the seams and taping that sucker shut with many pieces of shipping tape. I am either going to impress someone or piss someone off with my problem solving skills. I have my comfy cloths on and a fan in the window. I am planning on sleeping like a log.