Ethan’s Journey

 Ethan’s blood tests came back wonky again. I suspect he isn’t always taking his meds as he should be. They keep increasing his dose. Then then have him go back for blood tests. I am frustrated because I refilled his meds on Monday and found them still in their packages this evening. I don’t think, based on the blood tests, that he is taking his medications as religiously as he would like me to think. Apparently, my tone came through when I asked him about it. I am frustrated and tired that I am supposed to be less parent-y to someone that isn’t being as responsible as I feel he should be.  Taking the medications is the easy part at this point. If he takes them as prescribed, he can avoid these blood tests. I just don’t get it. Apparently this is normal for transplant kids at this age. It is typical reaction. That did make me feel better to hear. His doctors are wonderful to be able to help US through it. They help Ethan and myself in different ways. This is a growth phase. Wh...

 Today I woke up early to get cracking at work. I had a mid morning visit with a friend. It was a pleasant visit and I am glad I got to do it. This evening Paul and I did a little bit of work on the front porch project.  Ethan has been watching his monarch caterpillars turn into chrysalises. He always has been interested in bugs. It’s fun to watch. It certainly hasn’t been the worst type of critter on my kitchen table. It was a nice day to have the windows open.

 I had a hectic schedule this morning since the original appointment I made for Ethan’s MRI was rescheduled for a later time (last week they called me to reschedule, even thought this appointment had been made several months ago) for today. They called me to reschedule my 8am appointment for 11:00am. This last minute change threw a wrench in my work schedule. Ethan had to take the day off and it overlapped my afternoon plans. Totally annoying. When we arrived, they put Ethan into an exam room. The way they phrase the screening questions sucks because we have to answer a lot of things incorrectly. For example: Have you had a pacemaker/defibrillator placed?  Yes or no.   The answer is yes, but there was no place to indicate it had been removed with transplant. So that had to be it’s own discussion.  Have you received dialysis?   Yes….but not anymore since the kidney transplant. But there is no spot to indicate that. So each item had to be confirmed and reconfirmed...

 I put in some extra hours over the weekend and today so that tomorrow afternoon I could have a little play time. The morning will be spent with Ethan getting his MRI done of his brain to track the growth in his head. This has been an on-going thing and they suspect it is nothing to be concerned about. It is still “one more appointment” Ethan has to go to. He has complained about this and other appointments and just wants the appointments to stop. If we backed the clock 2 years ago, he would realize these appointments are far less frequent that they used to be. I do understand his frustration as there is always something to worry about medically. They have to give him contrast. Which means he will have to stay a little long to flush that out of his system and protect his kidney.  I also get on edge. I know these appointments are supposed to go smooth but I always feel like I have to be on guard. I feel like there will be some sort of mistake made and it will be my fault for no...

 Avery was excited about her lunch with her Physics teacher. She got to meet the other kids that are going for a physics major at Brockport. I think there are 9 total. Paul and I did lots of work outside in the yard today. We are still getting our sidewalk/patio project done. It’s getting there.  I stained a little plant stand I bought recently. I didn’t like how light it was and I added a bit of color and personality. One of our neighbors had two dogs, one is a beagle that has the famous began bark. The other is a smaller dog. They were inside. It sounded like they were in some sort of torture device. At one point we could hear yelling. My back is a bit sore tonight so I laid down for most of the evening. A good weekend where much was accomplished and we had some fun time too!

 Today Avery and I met up and ran some errands. We had fun. I heard all about the new people she met and the different things she was doing. Her room mate likely will not stay on the weekends. Avery likes her. They communicate via text mostly. Her roommate left this weekend as well (hence the text communications). Avery got some shelves for her room and a step stool for her bed. Her bed is quite far off the ground. I was supposed to stop at Lowe’s and forgot. This is for materials for our sidewalk/patio project, which is coming along nicely. By the time I got home, I had realized I had not picked the things up that Paul requested. Crap! I had Ethan help unload and put away the groceries so I could go BACK to Brockport. Ugh!  We then made a spur of the moment decision to meet friends out for dinner. Except I had already eaten. I happily munched on Paul’s French fries. We listened to a band and hung out. It was a nice evening. For anyone interested in writing/sending mail to Ave...

 Day one without my Avery. We texted a fair amount today. Things are going well. She went to the planetarium. I have pictures I forgot to post from move in day. Avery got her mailing address. Send her something embarrassing. Her Mailing Address is: Avery Diiulio 350 New Campus Drive McFarlane Hall Rm # 257 Brockport, Ny 14420 I kept myself busy with work. I did miss Avery around 3:00 when she normally comes home from work. She asked me if I want to come visit tomorrow. I said yes! I have a few things packed for her I can drop off. I will need to hide more cards for her though. Tomorrow morning will be busy coming up with some silly cards! I went out to dinner with a group of old co-workers tonight. It was fun. They will forever be my family! I am thankful for the friends I have that I can go weeks to months without seeing and pick up where I left off. That is process. As I tucked myself and Jiminy into bed, I am also thankful for people or things o give my love too. Jiminy kept lic...

 And then there were three. Rachel, Ethan and I helped load up Avery’s things to move into Brockport college. We were in the first bunch of cars that arrived and there wasn’t an established system of what the parents were supposed to do. It was actually a bit of a dumpster fire. No one knew what was going on. It was like they had never done this before. The people didn’t even know who to ask. Since there was no system in place, we sort of had them do a system that worked for us. We just parked the car and I started directing the people what to do. When a system is not in place, make your own. I had the guy driving the golf cart pull right up to our car. We loaded the golf cart trailer quickly. Avery road with her stuff and the man. Rachel, Ethan and I walked to the entrance of her dorm. The rugby team was there. They unloaded the trailer and took it up to the second floor in less than 5 minutes. It worked very efficiently. Avery got her key and was on her way. We were the first one...

 Penny had some drama today. She was outside and the Fed Ex truck came into our yard. This was very offensive to her. She proceeded to aggressively bark. The delivery guy wouldn’t come out until I picked all 12 pounds of her up and put her in the house. She was then a bit pissy that he was there. She wouldn’t take her eyes off him and verbalized her hatred for him the entire time he was in the driveway. What a protective and loyal little dog. I did feel bad for her as she had an upset tummy for most of the day. She felt sad about it and moped around the majority of the day. I am hoping she works through her tummy issues. Rachel came over tonight. The girls seemed excited. I asked if they wanted to go out for “The last supper” before Avery moves off to college. They jumped at the chance. Ethan wanted to come too. This was surprising and exciting. Paul met us at my favorite restaurant, Margaritas. We NEVER have to wait for a table, the food is always affordable and excellent, they ha...

 Today was much better than yesterday. I could feel the tension was easing up. Work went smooth. Ethan and Avery were both out of the house at work.  I chose to work outside today. I was tapping away at my computer as the dogs played and then napped in the yard. The kids came home and we went to the in-laws for dinner. Both kids fell asleep in the car. I was trying to make gentle turns just like I used to when they were little. Paul’s dad was overly hilarious today. He was cracking jokes left and right. It was good to see them and we enjoyed our time there. Tomorrow is a bloodwork day for Ethan. He still likes me to come for moral support. Fingers crossed his numbers look good and we don’t need another biopsy. Tomorrow is Avery’s last day home. We are moving her in to college on Thursday! Big week this week!

Spent another 40 minutes on the phone with collections. I had to go over the 12 separate bills from November 2020. Having to listen to the woman state the account numbers, date of service, and amounts due for all 12 accounts. I know it is her job…but I have the paper with the information on my counter….always. Each month, replacing the old one.  Of course we had to get Ethan’s permission for her to talk to me about his account. I know it is a rule they have in place for a reason, but everytime I tell them to put a note on his chart. It seems it is too difficult to look for that note every time. Ugh! Today was a bit different as the woman demanded money from me for a “good faith” payment. In what world does this make sense? The insurance company and the hospital are having miscommunications. They are both making mistakes. So I have to pay because you aren’t doing your job efficiently or correctly? I asked the woman if she ordered a product from Amazon and it never arrived, would she...

 We made it home. Another great trip in the books. Back to reality.  At one point this evening, Paul scooped up little Jiminy and nuzzled him and said “awe…..Jim….you don’t smell so good.” So stinky Jiminy will be getting a bath tomorrow.  Avery cleaned the house before we got home. She mopped and the house was clean! Good kid.  Ethan had some friends over and they did donuts in the driveway. We did have a few casualties with my flowers. If it wasn’t Ethan, it was going to be the rabbit.  Ethan had a little mishap with one of the burnouts. Oops. Tomorrow will be back to the grind. 

 Yuck! It was rainy and gross this morning. The poor dogs. Penny was convinced that she should not have to go out in this kind of weather. I was a little mean and made her. She didn’t dilly dally. Her business was completed in a jiffy. We did some therapy doc rock painting and then the sun came out. We spent the next couple house soaking up the sunshine despite the wind. We were able to take cover by strategically placed campers and vehicles. There was a corn hole tournament. The sun was welcoming and the wind was a bit standoffish! We watched the Bills game this evening and then enjoyed a campfire afterward. Someone may have gotten a face painted. The take away is: be careful if you fall asleep first!

 Holy wind Batman! I woke up and let the dogs out. The wind was so forceful on our door. I could barely hold the door open.   We decided to go into Clayton and enjoy the sunshine there. We went to a bar that you could sit inside and it overlooked the river. We sat right next to the windows and they framed the river perfectly. We watched the boats and there were these people surfing with kites. They would get lifted out of the water. We walked a few blocks down, browsing the shops.  For lunch/dinner we sat outside and enjoyed the windy day at a local brewery. It did get a little chilly towards the end. We drove back and the winds were worse. We found a little spot we could light a fire that was out of the wind.  Had some good tunes, good friends and lots of laughs. I would consider this a great day.

Our day started with our camping coffee ritual. Going over to Lois and Craig’s camper to share morning conversation.  The weather was a little overcast but we had faith. The sun poked it’s head out and we took the pontoon boat over to swim off the shore of a nearby island. We played on the jet ski’s too. We paddled in the water which was chilly at first, but we acclimated quickly. We had an afternoon washers tournament which was quite entertaining. The dogs got several walks. On one of my walks, I saw an osprey flying overhead with a fish it had caught. So cool. We had an evening fire that was quickly rained out. We did hang at the cottage next door and listened to some good tunes.  I would call this a pretty good day!

 So…spent some time on the phone with the hospital as our billing nightmare continues almost 3 years later. The hospital only has the capability of keeping current insurance on file. Somehow the hospital billed Ethan’s current insurance for services performed on his old insurance.  Because of this, progress was lost and now the collections  bill is up thousands of dollars. THOUSANDS! I have never been sent to collection in my life. We have excellent credit. I hate getting these bills. I feel like some sort of failure. I know it is not my fault but I hate that it looms over me. The hospital, insurance and collections company need to communicate and figure this out because I am sick of dealing with it. It is so time consuming and it seems there is no resolution in sight. I left it with the hospital and had them connect with the insurance company. They can just let me know when they figure it out! We got to camp today at a reasonable time. It was breezy but the wind died dow...

 Paul had me up in the night with his tremendous snoring. I woke up exhausted and felt run down all day. I am hoping I can get in some catch up sleep to the sound of the calming rain showers. Something about the rain makes me tired. I did get some fitness in while I was power walking the dogs. That was my bright side.  It’s 8:00 pm and I am excited to rest in my comfy bed.

 My bee stings were sore today. My neck/should hurt to turn my head to the left. They were a little swollen and very warm to the touch, but otherwise I felt fine. Avery went back to work today. She was excited to see her work friends. She missed them. I think if you have a job that you look forward to going to and people you enjoy being around, that is a gift. Ethan worked today. He had a friend over puttering around on his go-kart. I like that he is doing more with friends. It can be a lonely place without having people to laugh with. Paul was grouchy. He grumped all night. When he went up to take a shower I asked him to scrub off his bad attitude. I don’t blame him for being grumpy. He has a tonsil infection and that has been bugging him a lot. He has antibiotics to take and ibuprofen keeps the swelling down. His tonsil looked pretty angry. Our front porch was poured and stamped today. They will be back to pour and stamp the sidewalk and patio. It looks great! Can’t wait to see i...

 Ethan mowed the lawn today. This is a big deal because last summer he refused. He is now helping around the house and it is so wonderful. These little steps are actually big steps. I did some gardening. In the process a bee flew by my neck. I thought it was a mosquito. So I swatted at it causing it to sting me. Ouch. What I didn’t know is that I swatted it down my bra. It was inside my bra for the journey around the house inside to get an ice pack. I felt another stinging sensation around my boob and that little sucker got me again. I disrobed in my kitchen and found it. I preformed a swift euthanasia (not so humane). I feel bad that he won’t be pollinating my flowers but he can’t declare war and expect to win. I went back out to get back to work. Turns out, I was working around a ground bee entrance to their hive. I was NOT welcome. I brought a can of bee spray to help me combat some of these jerks. I think I need to use the powder that kills them. Avery is healing nicely. Paul f...

 Today is Phineas’s birthday. I miss him. I would have taken him swimming today if he were still alive. Man, he loved to swim so much. He loved his rock diving too! What a cool dog. Today I spent the day meal prepping. Lots of meals and variety was made. Paul will have some good lunches for the next several weeks. I went over to my cousins house for a fire. The sky wasn’t looking too hot. The smoke, of course, was following me. There was a brief shower and then it cleared right up.  For the rest of the evening, it was quiet and the fire roared on. We chatted and laughed as we exchanged stories about our summer and how it was going. Ethan went to a friends house for the majority of the day and Avery did the same. She is feeling much better and spent the night at her friend’s house. Paul still isn’t home from Boston but he plans to be tomorrow morning.  It was a productive day with some fun sprinkled it.

 It’s too bad that work gets in the way of our social lives. Thankfully it is Friday and I was able to cut out of work a bit early today.  I had plans with friends tonight involving a campfire. Paul was leaving Boston today and he wan’t sure if he would go to the Thousand Islands Orr come home. As the night went on, he found that it was best if he went to the Thousand Islands for the night and make the rest of the trip home tomorrow. I went to a friends house for a camp fire. It was really fun as I chatted away the evening. This is not like me but I was having such a good time, I stayed much later than anticipated.  Avery is feeling much better and she even had her BFF over. I got home and my house was quiet. Everyone was sleeping. I let the dogs out and did some online grocery shopping. I am so glad it is the weekend!

 I took the dogs for a walk first thing this morning to avoid waking Avery up. It was quiet out with the exception of the birds. The grass was wet and the slugs were out. I had to carefully dodge them as I walked around in the field. Work was crazy. Had a meeting with the bosses, boss to let them know how overwhelmed we are. That went well. Avery and I watched the American Pie series and enjoyed that. Hilarious! I met a friend out at the bar for a drink tonight. I haven’t visited with her in like 2 months. It was so nice to see her and I had a good visit.  Avery and I are having another sleep over I. The living room. Her star light was on. It was relaxing and I enjoy these moments.

 Avery slept in this morning. She looked so peaceful. I tip toed around the house making the least amount of sound possible. She slept until 9. Yay! That means she wasn’t in pain. She had another low-key day just healing and trying to manage the pain. Her swelling looks pretty good so fart tomorrow will be the worst day. Ethan mowed the lawn today. I didn’t ask him. This is a pre-transplant behavior. We haven’t seen this since 2020. It is a good sign. Avery picked away at college packing today. She would work a little and then rest. It is amazing how much pain can limit someone. We are having another sleepover on the couch. We just are having fun now.

 Avery survived the night and stopped the vomiting. She is sore but hasn’t complained about it once.she is a beast! Her swelling isn’t too bad, yet. Her make shift, hands free ice packs were her best friend today. She was able to eat a few things like jello, applesauce and mashed potato’s.  After work today Ethan, Avery and I watched Super Troopers. It’s an oldie but a goodie. They enjoyed the silly humor of the movie. Avery and I are having another sleep over on the couch tonight. It is super comfortable and fun. She brought down her projector and put some type of star cluster on our ceiling. It rotated ever so slowly. It is very calming. Here is a picture of my ceiling. It’s pretty wild. We had the windows open and listened to all the bugs chirping and making all sorts of bug noises.

 Today was the day that my sweet Avery had her wisdom teeth pulled. Poor Avery. They gave her good drugs which I was happy about. She was cute as a button. Afterward, she was drugged up and she couldn’t hold her eyes open. The nurse was giving me instructions on what to do when we got home. Avery quietly nodded along, with her ice pack tied to her head and her eyes closed, as if she was taking in every word this woman was saying. It’s funny how our mind knows what we should be doing even when we can’t. She knew she was supposed to be listening as she drifted in and out of consciousness. I finally told her that she didn’t have to remember anything. They discharged her and the nurse grabbed her under her left arm and I grabbed under her right arm. We got her standing and she took about seven steps and passed out slowly. The nurse thought we should get her back to the chair. Nope! I said, let her stay right here. I let her lay into my chest and cradled her. She was pale but the normal...

Avery and I had a morning campfire. I drank my coffee and she ate breakfast. It was nice.  I feel good like my house is a bit cleaner than it was Friday. Today was spent doing more cleaning but more important, making sure Avery had soft foods for her wisdom teeth removal tomorrow. She is nervous, as anyone would be. I think the oral surgeon we are going to is good. He did great work when Ethan needed some teeth removed. Avery is going under for the procedure so at least she doesn’t have to hear the noise or feel anything of the removal process. Isn’t anesthesia wonderful? We had dinner with family. That was really yummy. The sweet corn was delicious and we also had filet mignon. It was cooked perfectly and was tender. It was nice to have a minute to sit down and visit. The weather was beautiful. I enjoyed walking with the dogs in the field. They were feeling it after the second time around. They were drooling, tongues hanging out with heavy panting….it was warm. I like to close my ...

 I worked on getting my house up to livable conditions. I shampooed the couch, the water that came out was yucky. Dishes, laundry, washing bedding, cleaning out the freezer, washing the chair covers, making Avery special chip clips for college, dusting, cleaning bathrooms etc…. I was busy.  I did make time for a walk with a friend. It was a cool little park and we both brought dogs. It was Penny’s lucky day, as she is the only one that got to go. Ferguson tries to bite the other dogs and Jiminy is too fragile. We walked the paths and watched the dog’s run themselves silly. I was happy that Ethan went to his friend’s house to do car stuff. Once he returned home, another one of his friend’s stopped by to see him. This warms my heart. We ended up building a fire in the backyard this evening. The kids and I enjoyed the fire. Paul was away this evening. The dogs ran around doing dog things. It was fun to watch them. Jiminy petered out and just wanted to sit on a warm lap.  The...

 After work today, I took Avery shopping for college life. She has many things so far that she needed. We picked up things like a broom and dust pan, laundry detergent, Kleenex, snacks, and other little necessities that she would need.  It was fun to pick those things out with her. Her supplies list is dwindling quick. She has just about everything she needs. She now has the difficult task of as she describes “picking out which plants to take” with her. Ha ha! She is adorable. Avery is starting to get nervous for her wisdom teeth surgery on Monday. I don’t blame her. I remember mine. I remember the noise, taste and pain. She is going to an oral surgeon. They should be able to pop those out like apex from a apex dispenser. Ethan found a monarch butterfly egg on some milk weed. He has been looking all summer for a monarch caterpillar. Paul had done some weeding and pulled out a milk weed plant. Ethan scoured the leaves and found a small egg.  He put the leaf that the egg wa...

 Ethan has been trying to make some career pathing choices. He has many things to consider and choices to make. It will be cool to see what direction he will go in. He has made a lot of progress from last summer to this summer. He has a lot more growing to do but progress is being made. It’s like last summer he wouldn’t allow himself to have fun. He is now dipping his toes into the much needed water of people his own age. Avery is thinking about college. It is exciting and we plan to go shopping this weekend to pick up things she will need. I had a much needed catch up day at work. I loved it. I got to accomplish so much. I needed it! Tomorrow will be a different story. Back to back meetings all day, but at least I feel prepared. I finally have a weekend home. I welcome this. I haven’t been home for the last 5 weeks. It has been a busy summer. Not in a bad way, just busy. Penny kept me company all day today. I worked outside mostly all day. She had quite a fun day outside but tonig...

 My dogs are spoiled. They spent lots of time outside again today. I worked outside the majority of the day.  Ethan was home today. He was doing things that he hasn’t done in a few years. He has an interest in monarch butterflies. He did some research on how they hatch, where their eggs are laid etc. long story short, I have a milk week plant on my screened in porch with butterfly eggs on the leaves. I was excited for my work day to be over because I had plans to go out to dinner with a friend.  I met my friend and we chatted and chatted. We have known each other for years and it is like no time has passed every-time we get together. We have great conversations. I really enjoyed it. Our sidewalk project is getting closer to being done. We are hoping they pour the concrete this week. They have built the forms and brought in the stone. I am hoping to do a dog print in the cement.

 Today was a catch up day. Well….a “I tried to catch up” day. My email inbox is overflowing….but I am getting there. I was able to go on a few quick walks around the field between meetings. The dogs liked it. The sunshine was nice and the weather was perfect. I closed my computer at 4:00 and will not open it until tomorrow.  I started to read the news. I read about a local family that lost their son to a car accident. Then I read that the same parents lost their other son to a car accident last fall. I almost started crying for these people I don’t even know. How awful and devastating.  It makes things like a bad flight home seem so trivial. Awful and gut popping stories like this help to reset our worry-stress meter. I am sure the parents would just like to hug their kids one last time.