March 17, 2023. Moving on with Trust

We hired a lawyer to do our living will and estate planning, and we set up a trust. I am so deeply thankful that our friend urged us to do it after he took care of his parent’s affairs. Since we own property in more than one state, our assets could have been tied up in probate (probate is when after we die, court sorts out our case and a bajillion other cases) for 5-7 years, leaving our children to possibly rack up medical bills paid by Medicaid… until they get their inheritance and then need to pay Medicaid back as well as debt for properties that could not be sold while tied up in probate. WOW. We set up a trust (kind of like an invisible 3rd person who owns your assets so you can skip probate) to protect our children in case we die. We considered which relatives to be guardians of the kids, which is a tall order since Alyssa is medically complicated. We are thankful and relieved to finish this task. I did not realize how medically complicated children can change your life (and death) planning. Obviously we have zero intention of dying anytime soon. It’s just good to be prepared.

The courier came to pick up Alyssa’s urine samples for the trial. Collecting and shipping off pee is weird. Sharing a pic of this might be weirder, so I won’t.

We completed Trial visit #2. This time only Alyssa and I went. I drove. She got a nephrologist visit, blood draw, Hib vaccine, and an ophthalmologist eye exam. So far, so good. She remains in the trial until something is found that excludes her from the trial. So we are proceeding with scheduling Trial Visit #3 in April.

Alyssa gets paid to participate in investigational drug trial. Not all trials pay participants. Earning money makes her happy. She bought herself a plush giraffe. Her friends agree that getting paid a certain amount is worth getting the dreaded needle pricks. 💰

Brother’s been having bloody noses that come in waves for a few days. They happen a few times a year, but they’re getting difficult to stop bleeding. We’ll see an ENT later this month. Brother’s also got swollen hands and feet, which got better after 3 days. So weird.

Al is reevaluating his priorities. He’s always given so much to work, but now is such a tender time for kids. So what about the next 5 years? Our kids will be off to college in little more than that. Stuff to think about.