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 appeal, call

 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 he i

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 to k

 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 outside of the house dec

 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 about buck

 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 taken as well