Ethan’s Journey

 I am very discouraged. I had a fairly decent day. Ethan went with me to grab groceries. We had a nice car ride. He helped me carry groceries in. I got the mail. It went down hill from there. First envelope - collections agency. The charges are still not resolved from 2020 and I need to make more phone calls. Second letter-a bill from Avery’s doctors office because of the insurance snafu earlier in the week. Her visit was $600. Luckily, I know that our insurance is retroactive and this will be resolved after, you guessed it…a no doubt lengthy phone call. Third letter- a bill from NYC for the procedures Ethan recently had. It was for $1300.00. This will result in a phone call asking them to submit this bill to insurance (I mean why would they try that ahead of time?) Fourth letter- note from my insurance stating that my hospitalization was not medically necessary and therefore all of those charges are not covered and I am responsible for paying them.  I have to schedule an appe...

 I wrote to Ethan’s cardiologist in NYC today to try and initiate the transfer to the adult transplant team in Rochester. Nephrology has signed off, but before we can do anything, we need cardiology to sign off as well. From what I am told, we will meet with cardiology first in Rochester, then nephrology. Cardiology usually calls the shots, nephrology just makes sure that it doesn’t hurt the kidneys. That is my cliff’s notes version. I am sure it is more involved than that. It is scary to think that we will be transferring. We have had such wonderful treatment. Rochester will have big shoes to fill. It is hard to initiate trust with doctors. But I am hoping we can work together as a team to keep this kid going for many, many years. Ethan and I have discussed that he wants my help with appointments. He has grown a lot and has memorized the generic name and brand name of his medications, knows what condition they treat, frequency and strength of the medication etc. He has shown that ...

Happy Birthday to my Mom!!!! 🎈🎈🎈🎂  Avery finally has health insurance! Yay! That is if I can trust the person that told me that. Ha ha. Today I opened an unsuspecting inappropriate meme via text. It made me laugh out loud. I laughed longer than I should have.  I was able to share the said inappropriate meme with several other people. As I was waiting for them to view the inappropriate image, I was chuckling away.  I love that I have a group of people that send me things like this with the intention of sharing a laugh. Not only did it give me an immediate Las ugh, but I was able to share a laugh with others. I was laughing at the thought of others expressions as they were caught off guard. It’s so funny that one stupid picture can trigger such a fun chain of events.

 Happy Birthday to my nephew, Jason! He is 21 today! How did that happen? Today I found out that someone made a mistake in HR and I thought Avery was switched over to my insurance. I have an email that says so. I have green check marks in my HR app that say “approved” but when I inquired about her insurance card, I got a generic email saying “she is not covered”. There was no further instruction, just an email letting me know she wasn’t covered. “Thanks!” Because the email was so informative (sarcasm), I called and got someone on the phone. She was quite unhelpful. The person that no longer works there, approved something she shouldn’t have, and they never pushed through the insurance coverage. This unhelpful human kept telling me over and over that Avery “wasn’t covered” but had no solutions. She was just talking in circles and repeating herself. After poking and prodding with open ended questions, I FINALLY got her to realize that I understood there was a mistake and just wanted ...

 Today was a catch up day. We started cleaning up from Thanksgiving. We took the table down and chairs down. They live in our basement.  Paul put up the Christmas tree and the kids and I happily decorated it while Paul mulched leaves outside. The joke was that Avery had many less ornaments than Ethan had. Poor Avery. “Oh look…here is another one for Ethan” I would say….even if it was hers…ha ha. She was a champ with the teasing. Avery and I went to visit with my mom and Gene as well as Brian and Kristen. Poor Kristen had a migraine. Those totally suck. It is amazing how much they throw off the rest of your body too.  Avery and I ran some errands and then went to see the newest movie in the Hunger Games series. It didn’t disappoint. We both loved it.  We saw it at the Strand in Brockport. It is a teeny tiny theatre. The surround sound wasn’t working, which we dealt with. There were a few people being loud during the movie. It was driving Avery nuts. Paul had the outsi...

 We had another day with family. We exchanged small gifts around the Christmas tree. We won’t see these in-laws for several months, so we exchange now.  We went to the Pittsford dairy, a tradition we enjoy. We walked around and saw all the Christmas trees ready to be sold and decorated by families. We pet the cows, smelled the spruce/pine trees as well as the campfires going to warm up near. We took a family photo with silly Christmas sweaters/sweatshirts. Ethan had one but he thought I grabbed it before we left and I didn’t. Oops! He still looked Christmas-y. We went inside to warm up and ordered ice-cream, pastries and coffee. We brought Jiminy with us, so he could be part of our family photo. Ethan made sure to keep him bundled up. Ethan did have a few people come up asking to pet Jiminy and he talked to them. Jiminy helps ease social anxiety. Jiminy worships Ethan so it is a great little friendship they have. We shared many laughs for the rest of the afternoon. We talked a...

 Today was a fun day. Such a change from last year. Ethan and Avery have been acting like brother and sister. They do things to get under each others skin. It is fun to watch them irritate each other. Ethan  went shopping at Target with us. He even tried on pants. We were picking on him because he joggers are size 14/16 boys. They are short and tight. He doesn’t care. He has had the same pants for several years. It reflects poorly on me. I have offered to buy him new pants multiple times. We had fun at Nana and Papa’s. We enjoy family time. Each year becomes more precious than the last. We drove home after dark. We enjoyed the people that have decorated for Christmas already with lights. We call their Christmas decor “Christmas spirit”. “Wow! Look at all their Christmas spirit”, we say. Tomorrow we are going to the Pittsford Dairy. They have lots of Christmas trees. It smells amazing. They have cows you can touch and sometimes a campfire.  We are having our family picture...

 Happy Thanksgiving! As I reflect on the things that I am most thankful for, it is people that top the list. I find that preparing a meal for a big crowd to be fun.  We spent the day with family visiting, sharing a laugh and reliving stories we may have already heard, but they are still humerus. Facing moments where not everyone at last years table, was at this years table.  Working through those hard moments my heart goes out to you. It’s another successful holiday. It is one of my favorites.

 Thanksgiving Eve. It was a busy day. I had so much fun with Avery. I do enjoy cooking a big meal. Avery was such a huge help. She peeled 10 pounds of potatoes and the squash.  The Turkey is brined and just needs to go in the oven. We are excited for tomorrow.  I am feeling pretty good. Just a few little aches and pains here and there but nothing significant. 3 years ago today, Ethan got his new start at life. Crazy!

 3 years ago, about this time, they wheeled Ethan off to surgery. We had no idea he was going to have to fight for his life, multiple times. I had no idea how it would change our lives forever. I just remember trying to sit with him beforehand watching funny videos of animals to lighten the mood. We were both nervous. I am a firm believer that everything bad happens for a reason. We may not understand it or trust it. It’s there for a lesson in some way. Time usually will show us why, but sometimes you just never know. Ethan’s horrific ordeal brought me a sense of strength that I didn’t know existed. It taught me to be more of an advocate. It taught me to trust my gut even more. It pulled  Avery and Paul closer. It taught me that in those dark moments of despair to look for something positive, even when I didn’t want to.  We didn’t know her name at the time, but Nicole saved Ethan’s life. Nicole’s generous gesture of organ donation, not only saved Ethan, but several others...

 Thank goodness I work from home. These antibiotics are not kind to me. They are working though. The tenderness is less and less each day. My breathing is back to normal and I can even take big breaths. Yay! When Ethan got home, he was in his room. I had one of his blankets in the dryer. It was done being dried and was super warm, cozy and smelled fresh. I ran it up two flights of stairs to cover him with it in his room. I have told him in the past one of the kindest things you can do for someone is warm their blanket. I will warm Avery’s blanket for her sometimes, using the fireplace. I used to tuck Phineas into his bed every night after his last potty. While he was outside I would warm his blanket and wrap his cold self up as soon as he came in.  I relaxed tonight after work. I puttered a little bit but mostly laid on the couch and rested.  Avery sent me a picture of Jiminy and herself at college. I asked her if she took him to a frat party. He looked drunk as a skunk, ...

 In true Diiulio fashion, I stepped in shit. One of my medications caused tightness in my chest.  I noticed it when I woke up yesterday. The more I took my medication the worse it got. Last night I was laying on the couch with chest pain and it hurt to breathe. Everytime I moved I had a decent twinge of sharp pain. I had to breath shallow and rapid so that I could get enough oxygen. I just felt like I wasn’t getting enough air. I skipped my night time dose of the suspected medication and popped a benedryl. When I woke up this morning I called the number provided to report my suspected allergic response. The doctor agreed that I should not take that medication. They switched it to another medication that will offer the same antibiotic properties. On my way to the pharmacy, I enjoyed a rainbow that stretched across the sky. It’s pot of gold looked like it could be at the pharmacy. I picked that medication up and started it. It was kissed by the rainbow, it must be lucky. By the ...

 It is going to be a long 10 days of medication. The one gives me a terrible taste in my mouth. It makes my food taste funny. The other is upsetting to my GI system. I will call about this but we will see how it goes. Two doses down, 18 more to go. If that is the worst of it, I can handle it. Ethan went off to work pretty early this morning. He was gone until mid afternoon. He wasn’t very talkative today. Avery popped home for a visit before she went off the a friends house. The day was spent resting and trying to heal. The dogs helped by always stepping on the tender spot in my abdomen. They made me say bad words a few times. Today Jiminy turned 2. He is cute and lovable, nothing he does is ever bad. He makes us smile everyday. He is a great companion. This is a picture of him sleeping. He was so content, his legs were all over the place. Such an innocent goofball. We had a fire going in the fireplace and it was quite cozy in the house. Everyone at one point stopped and enjoyed th...

 I woke up this morning feeling so much better. I talked my nurse into bringing me coffee. She even made a new pot so I didn’t have to drink yesterday’s sludgy coffee. She doesn’t know it but we are friends for life. I logged onto my computer and played catch up with work. The colo-rectal fellow popped by and said that they wanted to keep me for a few more days. Eww! I really advocated to go home today. I felt much better. But he wanted to be “cautious”.  We will see where my advocating gets me. I am only on Tylenol for pain, and the pain is much less than yesterday. When they brought me my breakfast, I was surprised they brought solids. I confirmed with my nurse it was ok to eat solids and they said yes. So I happily drank more coffee and had a pancake and yogurt. Then I was full. If I can keep that up, I can reach my weight loss goals ha ha. At 10:00 the nurse finally came in. I asked her when my next dose of antibiotics was. She said 6 pm. Ugh! I don’t want to wait until th...

 I had an interesting evening. The past 2 days I have had pain in my lower abdomen. Sometimes enough to take my breath away and do Lamaze breathing while laying in a crumpled up heap on the floor. These waves of significant pain would come and go. I did a GI rest to see if that helped. Last night was quite uncomfortable. I knew I had to go get it taken care of today. I called the doctor’s office today and spoke with a nurse asking if I should just go to the ER because I knew I would need imaging. They agreed that would be best. I went to the local ER and was taken right back. I was able to get a CT. They had me drink a disgusting drink for contrast for the CT scan. I got some IV fluids but my mouth still felt drier than a popcorn fart. It was confirmed that I have diverticulitis on my medical record. My little pocket is abscessed. It was about 2 cm. Which isn’t huge but also isn’t small. I was transferred to a hospital that is able to accommodate overnight patients. My case needed ...

 Today I met my new boss. She seems nice. We will see how things go. I visited with my volunteer clinic today. I am helping them go paperless. They were all super nice and bought me lunch. I am excited for this project. This evening, Avery came home and we went to our high school trivia night, put on by the Alumni Association. The night consisted of many trivia questions with a large variety of topics. Our team was down a person. We were supposed to have 4 people, but we only had 3 (all female) brains.  The group was multi-generational. I saw one of Ethan’s elementary school teachers. He looked old. I decided that there is no way I aged as much as he did in the same number of years. Ha! Our team, even with being a person down, came in 4 th place out of 11 teams. I answered maybe 3 questions. But I was confident in those 3 that I answered. It was a fun night to benefit a good cause. It is nice to know that the money spent will be used toward scholarships.  We shared many l...

  I was really proud of Ethan today. He is really showing signs of maturity and growth. We had a meeting with the SSI office today. I had asked him to get his pay stubs together ahead of time as directed by the office. Ethan had them ready to go for the meeting. He even called and spoke with the lady. He gave all the information that was asked of him to give. He did it with a good attitude and without complaining even one time. I know he is almost 21, but this is a big deal for him. It is cool to watch him evolve. He has also been enjoying the dogs. Today I was watching him enjoy the littles in the window. Tomorrow is a big day. I have another clinic visit and then trivia night.  I am helping this clinic with their journey to electronic medical records. I know, it sounds riveting. Paul was fixing my car last night until almost midnight. I felt bad that he was up so late. But I have my snow tires on, my brakes all fixed up. Ready for winter! In the spirit of being thankful this...

 Monday! This week is a new week and I am leaving last week behind. Ew! Today wasn’t too bad. I actually was overly productive in chores and work. Must have been all the sleeping I did over the weekend. Ethan worked all day. When he came home, he spent some time in the living room and then disappeared to his room.  Paul came home, got his hair cut and drove back to work to work on my van. What a Saint! I made sure dinner was warm and plentiful for him. I also did many extra chores so he didn’t have to. This evening I spent some time watching Greta Van Fleet videos and admiring the craftsmanship of their jumpsuits. It seems as though the jumpsuits are always just a little too small every time. Somehow it all works. I do think that they are a talented band. They are often compared to Led Zepplin. Jiminy was bored with the music and fell asleep under the blanket.

I was tired today! I felt sluggish. I ended up taking a two hour nap. Phew! Then I was ready to go to a friends house for a daytime campfire. We ate chili and donuts. What more could you ask for? Ethan went to his friends house for a bit. This made me so happy. I heard him on the phone chatting with his buddies earlier today. I am so thankful that he was asked and was able to go. Any little bit helps Ethan socialize and blend in with the general population. I know this sounds silly, but I think he is sometimes held back because he was stunted socially a bit with everything he went through. Avery did end up shaving her head yesterday afternoon. She is bold. She has the perfect head shape for it.  She still has a significant scar on her head from when she cut it open on a nail in the chicken coop when she was 4. It looks like she was stabbed in the head. She could really evolve that story into whatever she wants it to be. Ha! We are getting closer to being able to have a fire in our ...

Happy Veteran’s Day! I have a few veteran’s in my life that I am thankful for. The selflessness that it takes to defend a country is quite amazing in my eyes. Thank you to all of our veteran’s for fighting for our rights! I actually went to bed last night around 8:00 pm. I slept all the way until 5 :30 ish. This am.  This is a big deal because I have been in turmoil about somethings going on with my job all week.  I was able to sleep without significant dreams. Today I got my ducks in a row. I did the typical cleaning. Avery came home and it was nice to see her cute face. She is thinking about shaving her head again. She can pull it off well.  Avery and I met a friend for lunch. Lunch was delicious and it was nice to catch up. Then Avery and I went and ran errands for the rest of the afternoon. I made a cheesy tortellini soup for dinner which everyone scarfed up. Yum! Paul and I had a date night and ran into several old work buddies which was fun. I got to catch up with m...

 I drove home from Syracuse this morning and was home by 7:45. Paul was sleeping still as he had the day off for Vetran’s day. Happy Veterans Day to all of those that have served to protect our rights. We appreciate your sacrifices, hard work and bravery. Today zoomed bye! Meeting after meeting, I had to keep trying to focus. I hear a noise and it disrupts my concentration. Like a dog with a squirrel. Ethan went to his follow up eye appointment. He has healed from the metal in his eye. There has been no change in his vision. His poor cornea has another scar on it. He corneas, like the rest of him, are full of scars from when he fought for his life. He stepped in shit and came out smelling like a rose. We will celebrate this! I am glad it is Friday. There was a lot going on this week. This introvert needs to replenish some energy.

 Today was interesting. I spent the day in one of the clinics I hire for. I kind of hope I get to do this with other clinics. It really opened my eyes and as soon as the day ended there, I sat down and re-wrote the letters I send out to candidates.  I hope it works. They were a very welcoming group of people. I got to spend time with Heather’s kids one on one. That was really nice. They have turned into some funny humans. While all the jokes people make (the people that aren’t teens) about teens, they actually can be quite enjoyable at times.  I have a very early departure to make it back to Rochester  before my first work meeting. I have a busy day that ends with Ethan’s eye appointment. 

 Avery called me today and let me know that the advanced chemistry she took in high school got her out of TWO chemistry classes in Brockport! Great job Avery. Saving us money with your brains. I finished work and drove to Syracuse. I am staying at my friend’s house. I spent the evening with her and her family. They were a joy to be around. I am visiting one of my clinics tomorrow, so my commute will be a bit closer from her house. I will also spend tomorrow night at her house and leave early Friday morning. Ethan has his follow up eye appointment on Friday.

 I have been in a funk the past two days. I received some devastating news about one of my coworkers and their employment status. I gave myself permission to throw a fit about it while no one was looking. I did throw a fit! I didn’t sleep well last night, and I had a headache that still hung on for a few hours this morning. Isn’t stress grand? However, I am trying to convince myself that change is an opportunity in disguise.  Ethan put out a YouTube video today. Here is the link:  https://youtu.be/ru6HC2zVTxg?si=m0uwIjueuyygM6ei Little by little he is showing signs of growth. I love looking for it and watching it unfold. There was a time when he just had no desire to make them. Depression was real and prevented him from doing activities he had previously enjoyed.  Avery sent us a video of one of the dorms (not hers) with fire trucks all around. They evacuated the building.A student had tried to cook something and it caught on fire. My question was “if they have a mea...

 Avery texted me last night around midnight. The fire alarm was going off in her building. She found out this morning it was because someone tried to make ramen noodles, but didn’t add water to the noodles. Oppppsss! I wish I could have watched the who thing go down. Hilarious!  I got another bill in the mail for services for Ethan in February of 2021. Ugh! I thought we had it taken care of! It ensued several calls and a bunch of time this morning. Sometimes I think I am being Punk’d. Still not resolved. However, we have our bill down to $40 in collections. Yay! Winning! Daylight savings screwed me up. I woke up at like 4. I logged in to work for a few hours. Then spent the morning doing overdue chores around the house. It was nice to have that time.  I then finished the remaining hours for my shift. It was great to take a break. My motivation aligned with my break, so I was able to accomplish many things.  Yay! 

 Avery and I took the dogs on a walk today and got to see a red headed woodpecker doing his thing. We got to hear his call. We watched him for a few minutes. I considered it a gift. However, I did not appreciate the annoying blue jay that was tacking outside our dining room today. Avery helped me give Theo his bikini trim for winter. It keeps his under bits clean. He is old now and arthritis prevents him from grooming as diligently as he used to.  Paul added an old tractor to our yard as a decoration. We were laughing about becoming rednecks. It looks cool. Ethan liked it and helped Paul load and unload it. It is nice to see Ethan smiling more these days. Ethan then came to me and asked me if the bug on his arm was a tick. It absolutely WAS a tick. It wasn’t attached and was small, so no blood meal. Yay! However, it true mom like fashion, I had my almost 21 year old strip down, in my kitchen, to his boxers and scan over his entire body for more ticks.  I looked in ears, i...

 Today was Ethan’s big event. He had a few buddies over beforehand. They also that their go carts and 4 wheelers. Sadly, Ethan’s monstrous creation that he has worked so hard on, sat in the garage, crippled from having the proper computer to run it! He was so close. Paul sat with me on the couch with me as we had our coffee. He was telling me how proud he was of the work Ethan did. He was saying that Ethan has grown tremendously in his technique. His welding skills have grown. He made a really cool creation. He basically took a go cart, extended the frame and added a ginormous engine. This engine is powerful and heavy duty. He and Paul have worked long hours getting this beast ready for the event. Paul had mentioned he was going to borrow a buddies trailer and trailer it to the event. I wondered what the point was. Rubbing salt in the wound? Here is the vehicle you can’t drive? Seemed mean. Paul explained that I wasn’t seeing it from the right point of view. Even though it wasn’t r...

The sun was out, illuminating the fall colors. It was really pretty. Every time I let the dogs out, I could hear the leaves crunching beneath their little paws. Theo even spent time outside for several hours, enjoying the sunshine. I felt bad for Ethan today. In the past he has expressed that it is hard for him to express excitement, because if he does, it is always, somehow ruined. Ethan has a big event tomorrow where he will be racing the go art that he made an engine swap in, as well as extended the caboose on. He was really looking forward to the event and POOF! Gone. He ordered a part for the engine. It was a computer of some sort. When he realized he ordered the correct part, but they sent, they offered to fix it quickly and again sent the incorrect part. I was annoyed that I had to work until 5 on a Friday. Ewww! Normally I am able to cut out a bit early, but not today! 😢

 Gene had his gallbladder removed today. I was the driver. I was glad I got to help in some way. Of course being at the hospital is always an experience. Almost everyone is civil and has manners. Then there are the ones with no self awareness, no manners and are annoying. This man came over and sat down near me. He had a rattle in his chest with each breath he took, that I guessed by his smell, was from smoking. He then proceeds to get a phone call with his ring tone volume on the phone at full blast. He didn’t answer the call on ring one, two or three. He looked at his phone for rings one, two and three though. Of course he didn’t walk outside or even move. He took the call on and proceeded to put it on speaker phone.  He received several calls today. He let them ring several times before he would answer. Every call was taken on speaker phone. Even the one about his court date. I don’t understand this behavior. I don’t understand letting it ring for an extended period of time...

 I slept last night for about 10 hours. It was the first time in about 10 days that I woke up feeling normal. No fatigue, no headache, whatever virus had it’s claws sunk into me has finally gotten bored and moved on. That is enough to be thankful for, for the entire day! How is it November already? I was able to take some time for myself to do my yoga, drink my coffee and do some chores before logging into work. I spoke up at one of the meetings I had today about something I felt needed improvement. I was proud of myself because it was in front of a large group of people and normally I try not to make an ass out of myself. I chose my words carefully. I was happy with the outcome and didn’t feel like too much of an ass. But there were about 40 people to witness it. I know that it is a part of life, but it is so uncomfortable. I need to practice some more so it feels less awkward. Really I was banking on that others felt the same way as I did and were too shy to say something. Finger...

 This morning I got up and quietly let the dogs out. When they came in, my coffee had already warmed the outside of the mug. I sat in the dark with the glow of the night shining in the house. Our night lights were shining giving off ambient light. I was snuggled under a blanket with 3 dogs with me. I was so thankful I didn’t take that other dog. He was a bull in a China store. I got my hair cut this morning and got about 4 inches taken off. It looks much healthier. I was starting to look homeless, so it was time for a change. After work I met up with a friend and went to dinner. We chatted about life and shared some laughs. It was much needed. All the waitresses were dressed up in Halloween costumes. It was fun. Paul and Ethan worked together all evening in the garage. Let me say that again. THEY WORKED TOGETHER….in the garage. Yay! They are communicating better and Paul stays home on weekends. Such a change from last year! Happy Halloween! 🎃