Quiet week

The past week has been pretty quiet for the kids. No big appointments–just a few regular ones plus online schooling.

Addyson started her mito meds. She has officially been on them one week. We have not seen any improvement yet (they said it could take a few months) but we also haven’t seen any side effects so that’s good. The pills are big and it’s a lot of them she has to take but she is handling it well.

We changed her NG tube Saturday. It didn’t go as smooth as we had hoped but we worked through it. She psychs herself out and then trying to work through that anxiety is hard.

Today the stress of all the medical debt really hit me. I got annoyed and frustrated that we pay so much monthly for insurance yet the bills keep rolling in. They just never stop. We pay off one medical bill and the next comes in. The realization of the amount just took over today. Seeing the numbers 😳 The thought of more testing happening this summer which means more numbers 😳. I know we will figure it out but today it got to me.

A few folks have asked how they can help. Here is the amazon list with things she always needs:


Here are some pics from the week. Addyson says this is how you cut onions (with pool 🥽).

Addysons cooling vest

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