Evelyn’s brain and adrenal ultrasounds were clear, showing no signs of calcification from the Cytomegalovirus that she was apparently exposed to. I didn’t get a phone call about the blood tests done on the same day, so I am going to assume that no news is good news and that her adrenal and liver function is fine.
Thursday, we received a letter in the mail from Evelyn’s neurologist, letting us know his thoughts and feelings surrounding the appointment. This is one of the nicer things about seeing a doctor from the RCH who flies down – his secretary cc’s us into the mail correspondence.
It threw me for a loop at first, because he put into words things that we’d only vaguely thought of. Seeing something in black and white is infinitely harder than having it mentioned in passing. Things like “background of delayed visual maturation OR cortical visual impairment” and behaviors “have the characteristics of a movement disorder in this age group”. Movement disorders are, as a whole, a pretty yucky bunch. But then, anything that doesn’t give me a perfectly normal baby is hard and I was angry at the Universe for dumping this on us.
Frankly, epilepsy would have been the easiest thing, if that had of been it. Instead they’ve labelled her “seizures” to be “non-epileptic paroxysmal episodes”, and decided that they’re probably not anything terribly serious. What is serious is all her strange twitching and just, everything. She’s a strange baby.
The neurologist recommended another test for transferrin isoforms. I’d hoped that Ev had had this one done, because while what it is testing for is super rare, I would have been much happier if it was already done and negative. I’m trying not to think about the implications of this one, because honestly, it’s so rare that it’s highly unlikely to be that. I am thinking horses here, not zebras. Frankly, we already have enough zebras.
Wednesday she has a hearing test, and more blood drawn. Hopefully this means the results of the blood will be back before we see the Neuro on the 7th of December.
That’s it, really. She continues to be adorable, happy and an absolute delight. I cannot tell you how grateful I am that I get to be her mother. Which sounds soppy, but trust me, it’s true.