Test results

Amelia's MRI/MRA was unremarkable! That means no visible cancer, no visible demyelinating disorder like leukodystrophy, no visible stroke or blood flow abnormality. The MRI rules out many long-term conditions that were being considered. We finally have an "official" diagnosis: post-viral meningoencephalomyelitis brain damage. That means the effects we see now are probably short-term signs of damage to the brain due to an infection of the brain, it's protective covering, and the spinal cord and it's protective covering. In human terms, it means both good and bad: yes, our daughter nearly died of a rare complication of a virus, probably H1N1; and yes, she will probably recover, hopefully fully.

Now we are entering a different stage - at least if Amy's recovery progresses as expected. I expect we'll be discharged from the hospital in the next 24-72 hours, after a visit from an opthomologist to check for eye damage, and initiation of physical therapy. We will be on the look-out over that time for a return of Amy's fever or worsening of her neurologic symptoms. Her pain continues to be somewhat severe, and I am thrilled that mother-touch still wins over pharmaceuticals: back-rubs, head massage, and warm showers are Amy's top choices for pain control!

We'll be returning home with a very sick little girl. One who still can't walk, has double vision, and speech deficits. We'll have to be on the look-out for falls and further head injuries, as she has a lot of motivation to walk regardless of her lack of skill! Toddlers are notorious for not understanding their limitations! We'll be requiring frequent PT (unless I can convince them that I am capable of keeping it up on my own) and follow-up both in Minneapolis and Eau Claire, so traveling will pose a challenge since I am still not driving.

It's good news, then! I am wary, watching closely. So many times on this course we've thought we saw the end of the tunnel, only to descend into darkness again with a relapse or worsening of symptoms. I am going to advocate for a 24-48 hour stay in the hospital post-antiviral therapy. I would like to be reassured that Amelia is, indeed, cured of the underlying infection and I remain slightly skeptical of that fact. If the pediatric team feels she can be discharged, or can reassure me that her infection will re-manifest slowly rather than emergently, I might let go of that desire. I am excited to begin working with Amelia more aggressively to see how much function we can regain before she is discharged to our busy home with three siblings! It will be a challenge to tend to her needs and their increased Mama-needs once we've returned home, to say the least!

My health continues to be a big question mark. I continue to have signs of miscarriage or hemorrhage, and return to the lab in the morning for blood tests and an OB doctor in the afternoon for more information about the status of my pregnancy and my blood counts. Please keep us lifted up!