4/26

Today is a dialysis day. Ugh! We dread these days. I was able to call the other unit that teaches home dialysis. We have an appointment to discuss the next step later this week. I do have to say all the nurses at dialysis are fun and super nice.

Ethan’s eyes are really bothering him. He finds it hard to read because his eyes constantly feel like they have sand in them. He tears all the time. We now have learned to take tissues with us when we leave the house. He wears sunglasses a lot because the light can be intense for him. We have learned to adapt.

I had to read his schoolwork to him because he can’t keep his eyes open long enough to read and they just constantly tear.  We have an inquiry in with the eye doctor.

His poor eyeballs.

Ethan is frustrated with his progress and feels like he should be able to juggle his schoolwork load the same as he used to. Luckily the school has been awesome, supportive and I can’t even say enough good things about how much they have helped our family. I did have to explain to him, he didn’t have all these extra appointments, medications and physical ailments before his surgery and to cut himself a break.

Ethan started urinating slightly more than he was.  He was going about 40-80 ml’s per day. Yesterday it was 100 ml. That is 20 % of our ultimate goal. Today was 150 ml. It could be a fluke. 

We aren’t overly hopeful at this point and accepted transplant.  What’s one more scar at this point? But part of me says....well...Ethan doesn’t really follow the rules so if he did get more function back it would be typical Ethan style. We actually laugh about it. 

Our day ended with Paul asking “Did you feed the dogs?”

Me:” No.”

Paul:”why?”

Me: “Because I was drinking a margarita.”

He fed the dogs. He is so appreciated. ❤️