12/16/21

Ethan had another nephrology appointment today. That means he had to go to the lab and get his blood drawn as well as go see the doctor. There were residents there so they saw Ethan as well. One of the ladies remembers Ethan from 9 Tower last year. She was shocked to see how his face has changed (she asked him to lower his mask). No more 85# skeleton boy. Today he is weighing in at 119 #.

We received the good news that he can discontinue his blood pressure medication as well as a stomach medication. 2 meds stripped away. Ya hoo!

I have really been pushing to end the daily injections and switch Ethan over to an oral medication. He is feeling tortured. I met with the hematologist today to discuss the possibility of this. We are going to start the transition as soon as the pills are delivered tomorrow. Unfortunately, he has to continue with the injections for at least another week.

Based on Ethan’s bloodwork, he is at risk for clots, so he will need to be on a protective dose of Coumadin for a period of time. So the plan is to continue the injections until next week. I call this the “de-medicalization plan”. 

I went on a walk around the Hamilton Heights neighborhood. It was really cute, quiet and I had no idea these little neighborhoods existed. 

Another day closer to us coming home.