Monthly Archives: August 2020

The first couple of years we walked for the first day of school. The last couple of years, we rode bikes. This year, she sat in a chair, and I taped her schedule to the wall.

Exciting at first, but soon realized all day of school without other people can get boring. Especially for ADHD kids.

Last week’s clinc visit brought tears because Zayne learned she will be getting another COVID test in November. Since Zayne isn’t getting better, she is going to get another heart catherization (7 month earlier than anticipated). Maybe there will be another test by November that doesn’t require a cotton swab to the brain.

Since rejection med is a little low in her blood work, we have to head out to Children’s Hospital for blood work this week (only a finger poke so no big deal). Last week, we arrived for blood work at 6:45 am when the lab opens at 7 am. Blood draw did not happen until 7:45 – that is a whole lot of uncomfortable time in a waiting room with other people. Next week is IVIG #5

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The day was spent watching TV and snacking. Water was guzzled the night before and in the morning – no tears this time around – IV went in smoothly on the first try. It was a good day (good for a 6-hr infusion).

I read some of an archaeology magazine to Zayne (we have a subscription), but after an hour it was time for TV and pizza for breakfast.

All the numbers were good (not better, but not worse). No donor antibodies. Heart failure indicator (BNP) still holding in the 800s. Heart rate still in the 130s. No change in echo or EKG.

No stomach issues this time around.

Last week there was some unexplained bad joint pain. Some extra tests showed nothing. Fingers crossed that joint pain doesn’t return.

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