September 11, 2019 12:00 pm

12pm update for Day 3 at Connecticut Children’s Medical Center PICU:

Alex is in better spirits this morning. His sass and sarcasm are making a comeback. He brushed his teeth with support this morning. He started ice chips last night and sips of water this morning. We will try solid foods for lunch today. He will also start physical therapy today. Goal is to sit in a chair.

Alex asks if he could go home to take a shower. We start to talk about what he remembers. Not much. I ask if he knows anything about the machine next to him and he says no. He starts to ask questions. We talk about what kidneys are and what they do for our bodies. We know the machine is doing the work for us and that some tests we’ve done might help give us some answers. He asks about school and his grades. He can get a tutor and the social worker will coordinate this for us.

“I wish I wasn’t sick. “He starts to cry.”

Me too, bud”. I hold back tears.

“Was I eating too recklessly?”

“Not at all babe. This is not your fault. “

“Are you saying that to make me feel better?”

“I would never lie to you. You can always count on me, Alex.”

We will continue to be in PICU for the foreseeable future. We are waiting on biopsy results which may take up to a week. Restrictions have been lifted and he wants visitors. I will bring his brothers after school.

Pictures are from the first day of school which started last week on Tuesday 9/3/19.

#FindADonorForAlex

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