More about Evelyn and various tests

by Veronica on November 24, 2012

in Evelyn

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.

Sarah @fignutmum November 24, 2012 at 2:38 pm

Gosh I hope the Neuro gets something from the bloods.
Have to say it is a lovely pic of your 3 babies

Geri Johnson November 24, 2012 at 3:28 pm

I love this picture of your three beautiful babies!

Julie Kelly November 24, 2012 at 3:33 pm

Gorgeous babies
Keep strong xx

Mrs Woog November 24, 2012 at 6:34 pm

She is lucky to have you, all of them are xx

Leslie November 25, 2012 at 7:41 am

Your children are beautiful! I love that photo. And you’re a wonderful mother, Veronica.

Alison November 25, 2012 at 7:45 am

Just sending love. Beautiful photo of your beautiful children.

river November 25, 2012 at 12:02 pm

I have to agree that no news is good news. If there had been bad news they would have said wrap her up and bring her in right now, or something. So hooray for good news.
That photo is adorable, they’re all just growing like weeds!
Good luck with the next round of tests.

Pauline November 26, 2012 at 10:46 am

It is great to hear the good news!

Michelle @ Raising Will November 26, 2012 at 10:57 am

I can’t imagine how hard this is is for you V. Hope answers come your way very soon.
Love and light to you and your beautiful babes xxx

Kate November 26, 2012 at 10:39 pm

What a beautiful bunch. Evelyn’s gorgeous little face just kills me. She is such a sweetheart. Lucky indeed.

cat@jugglingact November 28, 2012 at 6:39 pm

Here’s to hoping it is not serious. What a beautiful picture

Anne November 29, 2012 at 6:36 am

Keeping my fingers (and whatever else I can) crossed for you.

Loving the pic of your little ones … they are all so gorgeous! 🙂

Lindie November 29, 2012 at 4:51 pm

they are all beautiful!

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