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September 25, 2019 11:36 pm

Day 16: Family meeting with the doctors and social worker took place this morning. Biopsy results are in. They conclude it is a genetic disease called Alport Syndrome but cannot say for sure because the kidneys were so damaged and covered in scar tissue. They will perform genetic testing to confirm. This may explain Alexander’s hearing loss that was diagnosed in 2016. Alexander’s kidneys will not regain any function. He will need a kidney. If his dad or I are found to be genetic carriers for Alport Syndrome we could be excluded from being a match. If this is the case, he will be placed on a donor list. His blood type is O-. A universal donorll who can only receive from another who has the O blood type. DNA testing will take a long time so it may be weeks to months before we know for sure.

Alexander didn’t want to hear anymore. He doesn’t speak. Eyes cast down he opens YouTube,turns up the volume on the phone.

Boulevard of Broken Dreams by Green Day plays followed by High Hopes by Panic! At the DiscoWe wait to see if he has any questions.

“Mom, let’s play Monopoly Empire”

Later we play a round of bingo with the volunteers. We work together on a Lego Architecture set of London and end the night with a graphic novel.

We might get to bring him home next Wednesday. I will be back to work before then. My heart aches to leave him every night but his brothers miss me. They were able to videochat with him and talk about legos and action figures.


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