Amelia is home!

We are all under the same roof again, and it feels so good! Thank you for your prayer for sweet Amelia as she underwent sedation yesterday. Her lab tests so far have been good news: no new infection, so what we are observing is still part of the same illness. However, her neurologist is considering changing her diagnosis from Acute Disseminated Encephalomyelitis (ADEM) to Multiphasic Disseminated Encephalomyelitis (MDEM). MDEM is slightly less dangerous and damaging than multiple sclerosis. However, it is a more severe illness than ADEM, with multiple episodes of demyelination that can be triggered by viral or bacterial illnesses, stress, or unknown environmental factors. Each episode of demyelination carries the risk of permanent damage, all the way up to paralysis, mental disability, or death. I took a perfunctory look around the internet, hoping to find a link I could post about this multiphasic illness. There was none - just a few scholarly articles. I am used to living in the margins of normal, but it is even less pleasant when it is your child receiving an obscure diagnosis. The next few months of recovery will tell the doctors a lot about what is really happening in Amelia's brain. Any further exacerbations or "flare ups" will confirm the diagnosis of MDEM. Amelia was also tested for a particular type of protein in her cerebrospinal fluid and blood, which could confirm the diagnosis if it comes back positive.

Amelia and her favorite playroom volunteer, Dee.

Working hard at starting an IV on panda.


Katy gave Amy this cute pillow during her first hospital stay.
Now she "has to have it" each time she is admitted.
Her talisman against long stays?