Ethan’s Journey

I am not a perfect mom. I don’t make dinner every night. We don’t sit around a table and have dinner together. What I can celebrate is that at least we can have healthy food to eat in a hurry. All 4 of us get home at different times and are hungry at different times. I did food prep today. I stocked the freezer with lots of different options for us to eat “on the go”. I get accomplished. Avery is still on the prowl for junior prom shoes. She wants red and strappy. After visiting several stores, we had to resort to online shopping. We got some free tulip trees and red maple trees compliments of Sierra Club. I spent some time planting them, watering them and telling them home pretty they are. Ethan worked on his car a little bit. Paul mostly put up with me heckling him. Good night.

 Tonight we went to see a comedian, Jim Gaffigan, at the auditorium theatre in Rochester. Paul, Avery and I went, with some friends. The show was utterly hilarious. He is quite good at his craft. The show started at 9:30 pm, which is well past my bed time. We got home super late and we are going straight to bed, after the dogs go out. Can’t wait to snuggle in my bed.

I got an email from Ethan’s cardiology team. When I spoke with them yesterday and was talking about how Ethan has started feeling so tired, they tacked on some thyroid monitoring bloodwork to his labs.  They had me talk to endocrinology to discuss Ethan’s current dose as his level was borderline low. I reached out via email on my lunch break. Some days I feel like my days don’t belong to me. I have to do and accomplish for others. I have accepted this, but today was one of those days. I am grateful that it was tested and noticed.  I am feeling quite tired this evening. Probably trying to catch up from the last week or so. I have to listen and follow my body’s orders. Happy 50 th birthday Grant!!!!!! You are old!

The ride across the bridge, the 3 miles we drive (the Uber drives) is bumper to bumper and moves at a snails pace. I have often considered walking it as I think we would get over the bridge faster. However, not that much faster and since I am a little bit lazy, we will go by car. Ethan was in good spirits this morning which is good. Since he has been feeling more tired lately, he has voiced concern that he is worried about his kidney function. The bloodwork won’t lie. We went to nephrology and they were please with how Ethan is doing. We mentioned him being a little bit more tired over the past few weeks and they said that the blood work would be helpful. We went to cardiology next. Ethan got his EKG. It’s funny because his blood pressure in nephrology was 102/60. By the time he got to cardiology it was 119/79. They take his weight, height and blood pressure at each appointment because apparently the systems don’t talk and relay that info. That’s annoying. We waited about a half hour,

Today we drove to NYC. It’s that time again. Tomorrow is a busy day. A day Ethan walks into Columbia Children’s Hospital, smells the smells, hears the noise, sees the familiar halls that he walked over and over again. The trauma of just walking into the building is intense for him. The car ride the day before appointments is intense for him. Today was no different. However, I noticed a change in Ethan today. He chatted off and on the entire trip. This was WAY better than last months trip. Tomorrow will be a LONG day of lab work, appointments, echo, EKG, meeting with nephrology, meeting with cardiology and my own bloodwork….THEN a 6 hour drive home….then back at work at 6 am Thursday. It will be a BUSY 24 hours. Ethan has also mentioned he is getting tired more easily. I do get concerned when this happens. I am curious what his cbc says. I am worried he has become anemic again. Of that is the case, we will deal with it. More moves and counter moves. Wish us luck! 

 Caught 3 more mice today. 🤮🤮🤮 I did the work, pharmacy, haircut, visit with a friend thing today. I don’t mean to brag but I have some pretty wonderful friends. This particular friend is going through a stressful time.  I hate when I can see someone go through something upsetting, and there is little I can do to help. It’s a sucky feeling.  Tomorrow Ethan and I head back to NYC for nephrology and cardiology visits. I am thankful they are only once a month. After 3 more mice caught, I am hoping that is it. 

There is a chance that I may be a little dramatic and over reacting. I doubt it, but everyone else seems to think so.  There is a damn family of mice living in our basement. I told Paul to call the realtor, we need to move. No! This is NOT a dramatic response!!!!! The mouse somehow made it to our den. I saw it as I was pulling the chair covers off to wash them. I let out a god awful scream, as everyone knows that mice will absolutely crawl up my leg and eat my eyeballs out. Then I will be blind. That is if I survive the vicious attack. Also, they carry disease. If the attack doesn’t kill me, the plague it is carrying will. Somehow my family doesn’t buy into my thoughts on the matter and they feel the mouse should be caught and released. Eww! They terrify me. As much as I love animals, this falls into the “pest” category. I don’t like pests. Penny may be a little mentally soft, but she is a terrier. Terriers are known to be decent hunters and they are tough little creatures. I put Penny