Maria had routine visits to the neurosurgeon and neurologist over the last few days.
The news wasn’t good although also wasn’t exactly surprising. In particular the neurologist explained some things that have probably always been true. Maria’s brain is underdeveloped. Her brain stem in particular is small and that is the connection between the brain and the rest of the body. At some point they added microcephaly to her list of diagnoses. Literally it means “small head” and small head implies small brain.
She is also missing parts of the white matter in the brain, which is common with hydrocephalus. The grey matter is the part of the brain that thinks; the white matter is what connects the grey matter and passes information among different sections of the brain. Lack of white matter causes chronic fevers, spasticity, loss of coordination, optic atrophy, seizures, and cognitive impairment – all things Maria has.
The good news is that Maria’s seizures have dwindled. She often goes 2-3 days without any and even on a “seizure day” she has no more than 4-5. She still can have bad days, and I believe she had quite a few while she was traveling. That’s expected because travel is stressful and can mess with your sleep cycle, both seizure triggers.
Because of this, we are weaning her completely off the Trileptal. We’ll keep an eye on her to make sure the seizures don’t increase but I don’t expect them to. It will be nice to have one less medicine to give her.
She still weighs around 30 pounds, the same she has for months – maybe even over a year. She’s definitely longer and her feet are smaller (her AFOs don’t fit quite as well) but she’s not picking up more weight. She’s gotten to be kind of a picky eater which is part of the problem.
She’s also gotten very resistant to taking her medicine. It’s quite a frustrating battle for all concerned.
She and Cathy were supposed to go to San Diego today to see an audiologist there but both of them have been sick so Cathy finally rescheduled the appointment. With all the traveling they’ve done over the last six weeks (Albuquerue, Salt Lake City, Oceanside, Las Vegas) they are both pretty out of whack. So they are going to take it easy for a few days and try to get better.