4/22

Thank you to my friend Michelle for getting us a quick eye appointment to address the keratopathy’s in Ethan’s eyes. He is really having trouble with his eyes constantly. They are always tearing.

Our busy day went as smooth as it could. We will find out more information tomorrow regarding the ongoing pediatric vs. Adult dialysis. 

Ethan ate well today. We have to keep a good diary over the next couple days for the nutritionist. He did have a few episodes of nausea but he was able to keep everything down. Phew, it’s hard to watch Ethan become nauseous and vomit but it is even harder to watch all those calories lost. They are worth their weight in gold at this point.

Physical therapy went well today. The therapist and Ethan really seemed to connect. He will never find a skill set matched to his PT/OT at NY Presbyterian but this guy was a solid second string. 

I had forgotten to mention that when we went to NYC last Wednesday, most of my Sasquatch that I decorated around at NY Presbyterian Hospital had been removed. I saw at least 2 that are still hiding in plain sight. This made me laugh of course.

Ethan has gotten a list of stretches and exercises to do at home as well as going to PT twice a week. It is a work in progress so we will try to get him full of strength like Popeye after he eats spinach.

Our cardiology visit went well, Ethan’s doctor is a delight. She is so thoughtful of Ethan. She wants him to be “demedicalized” as in not have as many appointments now that he is home. This will allow him to normalize and not have to worry as much about which doctor he will see and what their bad news will be.

We are noticing things that are triggers for him. We have talked about it and decided if we recognize they are triggers we can try to either desensitize if possible or avoid as much as we can.

As we continue ie to navigate through this busy week, I am so grateful for so many wonderful people in our lives. Ethan has gained more independence at home and his sister even helped him with his medications tonight. What a nice sister.

Tomorrow will be a little easier, only dialysis and school. Not bad at all.