1/9/24

 We had Ethan’s appointment today. It started with his doctor emailing us on her way to work to let us know she was running late due to traffic. She gave us updates as the appointment time got closer. She had the pharmacist meet with us first to buy her some time.  This was being done between 8 and 9 in the morning.

This accessibility is what we are walking away from. It’s scary. I have been in the pharmacy, emailed the doctor and she sent a script over to have it filled. They are so responsive.

I also had a few moments of sadness as these people have been part of our lives for the past couple of years. They have been so kind even when Ethan was at his worst. 

Some of the questions asked were hard. Ethan did great. He was engaged, asked appropriate questions and gave appropriate answers. He knew his stuff. The only thing they said to work on is to call in his own refills. Once he does that, he will be autonomous. However, his doctor loves our plan of always having us both present when possible at appointments. Just because there is so much to keep track of.

I know my role in this. I know I will be the behind the scenes person, resolving bills, coordinating doctor peer reviews with insurance and trying not to be an over bearing mom.  But I still quietly keep looking at his ankles and wrists daily. Stealing glances to look for signs of swelling. Looking for excessive bruising and memorizing any mark on his body “just in case” something looks off. Luckily he walks around in his boxers a lot so I can monitor things on the down low.

Today I had a coughing fit while talking to an interviewee. I sounded like I was dying. This cold has its hooks in me. I do feel a little better each day. But I am so drained.

I am thankful that I didn’t need to leave the house today. Apparently it was windy. It was warm and cozy in our house. I am becoming a hermit.