Ethan’s Journey

 Today was spent puttering. I didn’t feel super great so I did little bits at a time. I ended up napping for a little bit.  Ethan’s friends spent the night last night. I didn’t know they were going to, so I went down stairs and woke one of them up a little after 6. I went back to bed to give them time to sleep in. They spent the morning at our house. They left to go work on one of their trucks. Ethan stayed behind. They were supposed to come back but they didn’t ever make it. Paul hung up Christmas lights. He was so excited because he bought new lights and they are controlled by an app. He is beside himself with joy.  He was cracking me up because last weekend a neighbor started putting up their lights. Paul started to get Christmas light anxiety. He called this neighbor “direct competition” however, when probed, Paul admitted that the neighbor has no idea it is a competition. MEN! Paul has been standing in the front window gazing at the property kitty corner from us. He ...

 Black Friday! Yikes. I avoid the stores. I worked all day today.  Avery and I went to a few stores and it was hectic! We survived. It is always nice to have someone else to share your thoughts on human behavior.  We had a cashier that was a chatty Cathy. After we had gotten our receipt, she started sharing her work schedule with us. The line behind us was long. People were patiently waiting. “I am done working in a few hours. I then work 3 more days, have two days off, then work two days…with three days off after that.” She barely took a breath….and then says “I have some extra vacation time that I am using up, that is why I am taking so many days off.” Avery and I started to walk away, looking over our shoulders and trying not to be rude. She continued with “we need to use it or we lose it. I didn’t use all of mine this year.” At this point Avery and I were crossing through the doors to go outside. I thought about the interaction. As an introvert, the idea of sharing al...

 Happy Birthday to my Mom! She turns 30 today. I am just 5 years younger. Don’t question it. Just accept these numbers as accurate. Happy Thanksgiving! This year was fun! We had some good laughs at the table during dinner.  My brother popped by for a quick visit! It was nice to visit with him. I prepared the bird for cooking. I took out the innerds and put a dry rub on the turkey. It smelled and tasted amazing.  I picked out Paul’s special turkey carving apron. We were laughing as he took his carving job seriously. We had some fun with it. Of course everything was delicious and we were all uncomfortably stuffed. Everyone was gathered around the table and there was laughter. At one point we were all laughing and sharing stories. It made my heart warm.  To reflect on what am I thankful for, there are so many things. I was thankful for everyone at our table this evening. I am thankful for being rich with friends and family. I am thankful for Ethan’s donor and their fami...

 I am still attending physical therapy. My physical therapist really pushed me today. My back is sore this evening and I had to do a bit of stretching to get comfortable. I felt bad because Avery was working on her resume and applications for internships for the summer. She asked for me to look o er her resume and the sitting was quite uncomfortable. She is going to apply for a few internships out of state, just to see where she lands. It would be a summer internship to grow her resume, so not forever. We prepped the cheesy potato dish. Tomorrow I will work on the turkey and glazed carrots. I really enjoy Thanksgiving. I enjoy preparing for it. I enjoy cleaning for it and who doesn’t love eating? I am hoping tomorrow moves by as slow as today did.

 I had a dilemma to work through today at work. I had kind of a miserable day. It seemed that everything I touched went to crap. I went and picked up the Wegmans’s subs for dinner with my friend in the hospital. Man, that was easy. I ordered ahead online.  Wegman’s was wild. It was full of feral humans with little awareness of themselves. I did the grab and go and paid for my stuff ahead of time! My friend and I visited. We laughed about stuff and had some good conversation. She is preparing to lose her hair next week at some point.  She is also trying to embrace this new way of living. Avoiding germs and people. She should be discharged Saturday. They are hoping for sooner. I quickly learned how to silence her pump. I still am bothered by beeping pumps. Tomorrow. I attend another physical therapy session. I hope we can avoid a deep tissue massage. 

 We have a friend from out of town that is currently undergoing cancer treatment at the hospital in Rochester. She is there for a few more days before she is able to be released.  I went to visit her to break up the day a little bit. We ended up chatting away, laughing and sharing life with one another. We talked about a lot of different things. One of the things we talked about is how things seem to happen for a reason.  There have been a series of events that have unfolded in her life over the past few months. Things they never would have anticipated. These things have all proven to be an asset to have happened, especially with this recent diagnosis. As she spoke, there were a few “the stars aligned” moments, without her even realizing it.  Sometimes life puts you where you need to be without you even knowing. Her family gets back in town Wednesday. She did say she doesn’t love being by herself all day. She is staying busy with books to read and doing things for he...

 I did some deep cleaning today. Paul helped. Even Ethan deep cleaned his bedroom! Mid day, a friend asked to meet up for a late lunch. She asked to go to MY favorite restaurant. How could I say “no”? We had margaritas and ate some Mexican food. Yum! We then went to a couple stores. We had fun and laughed at life.  At one of the stores, they had little pajama’s. Penny gets so cold and does like her pajamas. She runs around all excited to have her clothes on. Usually the necks are really big and she wiggles her front legs through the neck hole.  When I saw this pair, I knew that it was going to fit her. She got to put it on as soon as I got home. She was running all over and wagging her tail. I had stopped at a few stores prior to the late lunch. It picked up a few Christmas presents. That made me feel accomplished. We got a report that Jiminy is enjoying college. He likes all the ladies giving him attention. The house is quiet without him. Tomorrow will be a busy day for ...

  Today we celebrated my mom! She is turning 75 (but doesn’t look a day over 25). My brother and Kristen came to town for lunch. Gene put on a good spread! Her real birthday is on Thanksgiving day. The cool thing is, we will get to celebrate twice! It was nice visiting together as a family. We did share some laughs, which is predictable. Avery was talking about her classes this semester, her room mates and other school related things. She also packed up Jiminy and took him back to her dorm. Ethan seems lost without him. Little Jim is living it up with the 6 ladies, being fawned over and pampered. Our house is quiet without him. Ethan had a sad walk upstairs by himself tonight. We have established that Jiminy is our perfect dog. He is a gentleman, he cuddles and has never done anything wrong. He really is a perfect little angel. The turkey has made its transition to the refrigerator for the thawing process. Thanksgiving is coming. I am excited! This is a busy time of year. 

 I was working this morning with the lights off. It was a low stress vibe. The house was quiet, the dogs were sleeping. There was the constant hum from the fireplace blower. It was so peaceful.  I went to refill my coffee and actually looked outside. The wind was blowing in all directions, leaves were everywhere and it was raining sideways. I was so glad that my little bubble inside was so calm and unaware. The dogs are NOT loving the colder weather and potting in the cold elements. Who can blame them? I am glad it is Friday. It seems the week days drag on and the weekend is gone in the blink of an eye. We have plans for both weekend days. We will have to work hard to get everything done beyond that. Must get the chores done. Tonight I made Chex mix. This came about because Ethan said he missed eating it. I made a large batch and put it in smaller containers and bags. They will be the perfect size for the men to take to lunch or have as a snack. Jiminy stayed warm today. I did...

We didn’t do much to “celebrate” Ethan’s 4 year anniversary. I think that was the beauty of it. We can exist in the same space together. Sometimes acknowledging a milestone is enough.  I did look back at some of the pictures from 2020. I find it comforting to see how far Ethan has come. I find it comforting to see the nurses that supported us, rallying around Ethan.  They still keep in touch. I texted one of them a picture of her and Ethan. I took it when Ethan was able to walk just a few steps on his own.  We would sneak over to the internal elevator that the staff would us. I would push Ethan in his chair and head up to the floor she was working on.  Then Ethan stood up right in front of her and brought tears to her eyes. They put their all into MY kid. She was so wonderful with Ethan. They all were.  Ethan texted me several times throughout the day today to share what was going on at work. That was my gift.  I noticed when ai heard Ethan’s car this after...

 I have been feeling a bit stressed with Ethan’s medication change. The new ADHD medication can cause increased blood pressure and increased pulse which can be hard on the heart.  Pair that with Ethan’s lab work from Saturday, with his potassium coming back in the danger zone. His potassium was in the zone that increases his chance of a cardiac event by 62%. He was started on a potassium binder which we picked up and started today. It is a powder that you mix with a drink. It is similar to drinking wet sand. There is no pill form of this medication either. It is a drink. Barf! It works quickly but it is still one more thing that could go wrong.  His kidney values came back the worst they have ever been. He was taken off the one medication that was supposed to help with that. His kidney function is at 50 % and will likely not improve. His body seems to be handling ok for right now. He does have to go back for blood work but we may need to expedite that before his insurance...

 Today was another catch up day at work. It was presentation day. I practiced my presentation this morning. I felt pretty prepared. When it came time for me to present, I had my coworker AKA my moral support for the tech connection, help me share my screen. That was my biggest worry. Luckily she was quite helpful and I was off and running. I was really trying to be mindful of my “ums” and “uhs”.  I tripped over my words a few times but overall I felt it went well. I hopefully will be able to recycle this presentation for another school. I spent time at my Mom’s this afternoon and evening. We watched a few shows together while sipping on wine. I liked that.  We have been monitoring Ethan’s blood pressure daily. His new medication is known to raise blood pressure as well as pulse. If it gets too high, they are worried it will affect his heart health. Yesterday the doctor advised to cut Ethan’s dose in half. He is taking capsules. Luckily my training in compounding medicatio...

 Today Jiminy is 3 years old. My cool little dude that captures the hearts of all that he meets. He is silly. He is playful and has learned to stand up for himself. Ethan has taught him how to go up and down the stairs and in the past month or so, he has become brave enough to jump off the couch (with Ethan’s help). He is a perfectly imperfect gift. I was so thankful I had a somewhat quiet day at work today. I needed that. Paul stayed late at work tonight. He didn’t get to laugh at many of my jokes because I went to bed soon after he arrived home. Poor Paul. I pranked one of my coworkers today by totally gaslighting him on purpose. I laughed out loud as I watched the show I created. Then I gave him the reveal of what I had done. He he! I was laughing. I reminded him that only the people I like get teased. It is my odd way to show I care. He didn’t hold a grudge thankfully.  I am off to bed.

 I did a lot today for someone with a sore back. I did as much as my body would let me. I rested in between chores. But finally I got sore enough to stop. I was going to log in to work, but lately I feel like that is all I do. I work early, and late and weekends. Today I just said “no”. I did some reading instead. I don’t really like to read. But this was reading about St. Lucia and trying to plan things for while we are there. I read about this short hike that supposedly has stunning views. Apparently the hike is rated for kids 5 and older, so I should be able to do it. Ha! I guess we will see. I was also mapping out how far things were away. If we drive to one thing, what else can we do near it? This is the part of planning a vacation I find so fun. Paul arrived home at 12:30 am with the new to us jeep Cherokee. It is grey. That is all I know about it. That’s really all I need to know. There is no sense in cluttering my brain with more information about a vehicle I don’t anticipa...

 Paul flew to North Carolina to pick up a jeep to replace the rotten one we have. The frame has rusted through and is no longer safe. It is 24 years old. We paid $500 for it 9 years ago. I feel like we got our money’s worth. Paul flew there yesterday. Our nephew was instrumental in picking Paul up from the airport, giving him a place to stay and taking him to the person Paul was purchasing the jeep from. He was a HUGE help. When I went to visit him at the end of September, I took several little plastic ducks and hid them around his apartment. At least 35 or more. I sent a huge handful of ducks with Paul. I instructed him to hide the ducks all over when my nephew was in the shower.  Paul followed the directions and my nephew found one prior to leaving his apartment. He made a comment to Paul that he is STILL finding these ducks. Paul snickered to himself knowing there were so many new ones to find. Paul drove the 10 hours home. What a long day. I remember how exhausting it was ...

 This morning as Paul and I were chatting over coffee I was telling him about my thoughts and things I noticed at the Theresa Caputo show. Paul thought it was very odd the way that I process things in a crowd. When we arrived, we stood in a line going out the door. I noted that all the doors were unlocked and both sides opened that way in the event of an emergency, we don’t wind up in a situation where there is limited escape. This is something that my father taught me to check when I was little. He always checked to make sure that both doors were open and none were locked. If they were locked he would unlock them. He was once questioned by someone about this and he told them it was illegal to have both doors locked during business hours for public safety. He then went on to tell them he could call the fire chief on the spot if the establishment wanted to challenge it. No one ever took him up on that offer. As my friend and I found our seats, I located the fire exits just in case w...

 I have 4 1/2 days until my virtual presentation for the vet tech students. I want to make sure it is helpful and not boring. I worked on it this evening and really cleaned some things up.  My coworker that set this up said she was going to help jazz it up. I love teamwork. She is really good at making things look professional. I am excited for the presentation.  Today I was feeling much better. I didn’t need a nap in the middle of the day. Ugh! I even made a few laps around the field. My life is a bit boring but someone has to live it. Paul is getting ready for an upcoming trip. He is going down south to pick up a jeep. Since our other one rusted through the frame, this will be the replacement. Paul is going to spend some time with our nephew, spend the night and drive home the next day. If my back wasn’t in such bad shape, I would join him.  My back feels bruised from yesterday’s physical therapy session. My PT did the deep and painful massage. Today it feels like ...

 I woke up in the middle of the night in full on migraine mode. Luckily I was able to get it to subside enough to fall asleep. When my alarm went off, I was VERY foggy and my stomachs was off. I had back to back phone screens throughout the day. I had physical therapy at 8:00 am. I decided I could power through it, but it was rough. My physical therapist kicked my butt and I walked out more sore than when I walked in. At one point during the morning I had a point where I was struggling to keep my eyes open. Over my lunch break I set an alarm and took a little nap. That did the trick. I felt so much better after that. This evening I had a date with a friend to go see Theresa Caputo. My friend parked her car illegally and chanced getting a ticket. Her good karma must have paid off. She didn’t get a ticket and we were on the road relatively quickly due to her choice of a location with easy exiting. On our way in, we had some lady with ill fitting pants in front of us on the escalator....

 We have had Moe now for 4 1/2 months. I was watching him sleep today. I got mad at all the left over scars. Sometimes we can’t see them. Sometimes they stick out like a sore thumb. I still don’t trust him around a lot of people. Last night we had a visitor. He had his fur standing up and was not happy. I do feel safe in my house. I think he has really bonded with me and he is protective…even when I don’t need it. He is a project and he has taught me so many things.  I had trouble focusing today. I am not sure why. The day dragged on. I was hoping to get more accomplished, but I didn’t. It wasn’t a very satisfying day, but I made it through. Ethan shared how this week at his job they have government inspections. It sounds like everyone wants to make sure things go seamlessly. I started getting a headache this evening and decided to just go to bed early. I am just going to start over with a new day in the morning. I am hoping my headache decides to go away. 

Let’s take a moment and thank all the veterans that have served our country, so that we can have our freedom. Thank you!  I went to my follow up neurosurgeon appointment today. He confirmed that I have avoided surgery! Yay! I asked to continue with physical therapy for a bit longer as I felt it was offer slow and steady improvement. He offered to send me to the pain clinic for trigger muscle injections, which I declined. While I am still not comfortable a lot, I can handle this without injections at this point. Plus that sounds not pleasant. On my way home, I receive a gift. I turned the corner and standing in the middle of the road was a big, beautiful and proud turkey. He was in the way of traffic but everyone did their best to offer him some space.  He was crossing the street with no sense of urgency. He was more showy than I have seen turkeys in the past. All he wanted to do was to get to the other side. I had many meetings today. I worked until about 7 pm. I am hoping the...

 Weekend days are so needed. My whole week is filled with appointments or work appointments/meetings. I have to pay attention to time. Sometimes I can feel like Gumby having my attention pulled in several directions. I was kind of lazy this morning. Not because I wanted to be. Because I needed to be. I needed to lay on my heating pad and do my banking. Prepare for my meetings tomorrow, and even play a few games of Solitaire. I believe it was my friend, Heather, that got me into playing Solitaire earlier this year. My back was feeling better today than it was yesterday afternoon/evening. I still have trouble sitting for long periods of time but it is now manageable. I did notice that I am able to put on my socks without bracing myself from the shooting pains going across my back. That is progress. I did my exercises and stretches throughout the day. I can see the value in it. I still have soreness but it is mostly because I have to build up my core. I made a dessert to bring with us...

 Today I spent doing errands. I made sure that my errands involved time in Brockport. Since I was in Brockport, I might as well visit with Avery.  We returned bottles and cans. We went to Goodwill to find treasures. We found a couple. We had dinner plans with friends tonight. It was fun and we had a great time. There were 3 couples and we get along well! I was the designated driver tonight. We switch it up. Paul had some fun and we had a hilarious drive home.  We pulled in the driveway and we were laughing so hard. An incident happened where Paul gained a Mario brothers accent and threw his hand in the air. It cracked me up. We couldn’t stop laughing at his italian-ness in that moment. Sometimes you just need a good belly laugh to share with someone!

 My back has started to feel a little bit better. I just have minimal pain and also pain when sitting for extended periods of time.Which for me, is considered anything over 10 minutes. I have been doing my exercises diligently and have continued to add new ones and more repetitions each day and while these adjustments are small, I do feel the effects in a positive way. I do not enjoy doing them however I do enjoy being able to walk around the field again without significant pain. Let’s be clear I do not like exercise but the exercises that they have me doing are tolerable. I think that’s the key. You have to do exercises that aren’t too painful or too obnoxious for your body to handle. Most of my exercises are done lay down. I can handle this. I actually will do them. My physical therapist gave me an exercise to do on my hands and knees and I flat out refused. It was terrible excruciating and I hated it and I flat out told her no way give me something different. This evening, our p...

 The aftermath of the election has left me annoyed.  I am annoyed by the passive aggressive remarks. I understand that there may be differences between everyone’s choices.  The past I don’t care for is taunting one another. Why? Gloating, tantrums, name calling, signifies to me a lower IQ. It doesn’t even matter which party you supported, both are guilty! The name calling, the hinting of stupidity level for either party is unacceptable. I have been proud to say, in our house we have differences of opinion. We are still ultimately kind to one another. Let’s just all agree to be kind to one another. Tonight my company hosted an event for students to play trivia. It was to support them and help them practice for their upcoming licensing exam. The host did a fantastic job. I was a moderator. It is so fun to interact with the students and answer any questions they may have. Thank goodness for Google.  Tonight Penny INSISTED that she should sleep in our bed. She looked pre...

 So it turns out trying to get Ethan an alternative insurance plan once his Medicare plan ends November 30 is quite difficult. This morning I called the New York State of health phone number for assistance in figuring out what we need to do to get a primary care insurance in place of Medicare. Ethan still qualifies for Medicaid at this point, which causes it a little bit of a hardship in the form of it limiting our choices on how to proceed. I was referred to call the Monroe County social services phone number. I called yesterday at 2 o’clock in the afternoon and got a message that they were closed and that their office closes at 4 PM. Paul made a good point and said likely it was closed because it was voting day. It was that exact moment I regretted not having a government job. Today I called and the number rang and rang and rang over 300 times before somebody answered. The first time I let it ring about 100 times and hung up because I thought that there was an issue with the phon...

 If Paul and I were being graded on our parenting regarding voting, we would have gotten a 50%. Not quite a passing grade. Luckily we are being graded on a curve (that is what I tell myself). We took both kids numerous times to vote. We explained the process. We explained the issues. We tried. The cool thing is that we are all adults. We are all in charge of our choices and have to respect each other’s choices even if we don’t agree with them. Ethan chose not to vote. I tried to get him to come with us. He feels like his vote doesn’t matter. He said he hates the electoral college and feels like it causes a barrier for an accurate count. We will continue to advocate voting. We got to voting very early. Paul suggested we go out to eat afterward. So we had a voting date for breakfast. I am not going to pass up on a meal. I am not barbaric! We had a nice breakfast at a local diner. I was teasing Paul because he ordered a “western omelette” but instead of ham he wanted sausage and inste...

 We finally received the finally word that the insurance company refused to cover Ethan’s medication for his concentration. This caused the psychiatrist to have to discuss other medications with the cardiologist and nephrologist. They gave us two options. One had a side effect that could potentially make Ethan more prone to seizures. The other has the potential to raise his blood pressure and heart rate.   Since Ethan is driving and could hurt himself or others if he has a seizure, we chose the other. If Ethan had a seizure, the state would take away his license for 12 months. No thank you! We have a plan to monitor heart rate and blood pressure when he starts his new medication. He will also be started on a low dose and we will monitor his liver values. I had to put a note into the nephrology team asking them to hook me up with the transplant social worker. We need to navigate through this loss of Medicare. Ethan has the email address to his company to ask about insurance. Ho...

 I woke up today sore. I think I over did it yesterday. I did little bits at a time and likely over did it again today. I spent the last part of my hours awake, flat on a heating pad.  Daylight savings in the fall isn’t so bad. Gaining an hour is the fun part. Losing an hour sucks. Plus it is going to get dark so early now.  Paul and I had our coffee together this morning. I sent him some funny videos, which he belly laughed at. It makes me laugh. Ethan seemed a bit bummed that he didn’t have an event to look forward to. He was so excited about yesterday’s event. Today was a letdown. Avery and I exchanged a few texts throughout the day. She’s a good kid. Jacob’s mom is struggling a little bit. She is dealing with the difficulty of living with someone after a traumatic brain injury. You have your kid, but not the same version. You are glad they are alive. But they aren’t the same. We texted back and forth several times today. I love when we change our sheets. They smell so...

 Today I felt a little better. I was able to do more things than last weekend. I would do things, then rest. While I was resting, I was working on my presentation I am doing in less than three weeks. It is for a veterinary college and it will be virtual. It’s about how to write a resume. Since I look at so many per week, I have plenty of examples of what not to do. Ethan spent the day with his buddy at JNK day. This is when a bunch of guys get together and race go carts, 4 wheelers and more. Apparently a truck caught fire. Ethan drove his gocart and he broke a weld on it. They had so much fun. Tonight was the night Ethan chose for his celebratory dinner for completing his apprenticeship at the machine shop. He chose Chinese food and take out. He and his buddy then watched a movie. Paul and I went to a retirement party for a vet that I have worked with. It was fun. It was nice to see people I haven’t seen in a while!  As I walked up to the bar, my physical therapist was moonlig...

 Ok, so it is November. I decided to make a fancy coffee this morning. I used my Ethan mug. His famous “I want a toilet” scribble he did after his heart transplant. Of course we made it into a mug. I was at Aldi and they had their peppermint whipped cream out. I also picked up some peppermint dust. I was a lively celebration of peppermint and coffee in my mouth! I can almost feel the diabetes knocking on my door. We got a notice that Ethan’s Medicare is ending at the end of this month. He is considered cured and no longer qualifies. That will be fun to navigate by the end of the month. I had to order a new hair straightener because mine fell in the toilet. No joke. RIP to my previous one. Paul and I went out to dinner. We had a good chat and planning session all while enjoying yummy foods.   My back was sore after physical therapy. I took it easy the rest of the day. Tomorrow and am going to stretch everything. Ethan’s buddy came over and is spending the night tonight. Tomorro...