🏎 7/21

🏎 Avery got her paper permit today! We had to head over to the DMV in Henrietta. Yeah Avery! There were no jerks today. 

Avery knows the rules and now she needs to learn the muscle memory. We took a drive around the block together. She has many “opportunities for improvement”.  She will get there. It’s so cool to watch the kids grow. I mean I hate that they are getting older but it’s cool to watch the fruit of all our labor to flourish. 

We came home from the DMV, and had a dialysis session. We had 30 minutes to spare before Ethan and I had to drive across town to his nephrology appointment. I hopped on the lawn mower and zipped around until I was signaled it was time to leave.

Ethan and I arrived without a minute to spare. We met with the nephrologist (and of course our BFF dialysis nurse) and discussed Ethan’s frustration with his enormous lack of energy. Much effort is put into daily tasks like brushing his teeth and eating. It leaves little for anything else. He has started to lose weight again. We have a plan moving forward to keep a close eye on a few blood parameters and to try to get Ethan’s iron levels up so that he can go on a maintenance dose of iron. All we can do is wait. I strongly dislike waiting.

On the flipside, Ethan is looking forward to spending the weekend with one of his best friends. They have lots of food to eat and Ethan can try to be as normal as possible. Ethan is going to work on finding his joy. He and his buddy have plans and I am hoping he will have enough energy to carry them out.

Tomorrow is another dialysis day. Then we go to the cardiologist in Rochester for his Rochester check up, then EKG and echo to make sure this extreme fatigue isn’t heart related. Fingers crossed.