September 21, 2019

Day 12 at CCMC: Dialysis again this morning. No medical changes to report. Today we walked around again to catch pokemon. We also spent some time in the family resource center on the computer. I checked some emails and paid some bills. He played Minecraft.

At lunch we experimented with Mrs. Dash, margarine, and pasta to get him to eat a bit more than the usual PB&J or tuna salad sandwich and broth. He put on a smile and a brave face and proceeded to eat.

“It tastes much better with the Mrs. Dash. Thanks for the tip, mom.”

I took a bite. It’s not good. But he ate it anyway. He knows I want him to eat. He’s lost so much weight. My sweet angel.

Alexander agreed to balance out the screen time with academics. We did geography, math and finished off with some leisure reading. He received many books from some special people who love our family and share our joy in reading. He chose “The Golden Compass”.

“How is it Alex?”

“It’s really good. I bet you I can finish it this weekend mom.”

I know you can. You are an extension of me.

Showers before bed are hard but getting easier with practice. Cling wrap. Tape. Plastic bag. More tape. We can’t let the catheter get wet. I ask the nurse to inspect my work before getting in the shower. We add more tape here and there.

“I can almost shower like a normal kid now, mom. When do you think they will take the catheter out?”

I wish we could baby.

#FindADonorForAlex

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