Tuesday, August 7, 2012

our neurology appointment last Thursday
{alternate title: upcoming tests & exceeded expectations}

Thinking about last Thursday exhausts me.

First, I left the house a little before 9 to bring my two big kids to a friend's house so they could play while Zoe and I headed to the cardiologist. That drive took longer than planned because I was so concerned about having all the Taiwanese medical records and other needed items - oh, and the kids! - with me that I turned the wrong way out of the neighborhood.

And didn't even notice until I had driven five minutes in the wrong direction.

Oops.

That wasn't exactly how I expected to start the day.

After dropping off the kids, I drove to Duke Raleigh Hospital to see the Duke cardiologist. And I Facebooked, "I enjoy the irony that Zoe, daughter of a UNC grad and a NC State grad, is being seen by a Duke cardiologist." (As my roommate from Carolina commented, "My soul hurts.")

After that wonderful appointment, I returned to my friend's house for sweet conversation and encouragement. Karen never disappoints in that regard - so thankful for her!

Then we swung by Cookout - 'tis the season of watermelon milkshakes after all - for lunch and by the old 'hood to pick up one of our old neighbors so that she could hang out here with the big kiddos in the afternoon.

Zoe and I dropped Natalie (newly a teenager - happy birthday, Nat!), Jocelyn, and Robbie off at the house, and then we headed just a few minutes down the road to Raleigh Neurology.

And then we got home at about 3 or 3:30pm. What a long day!

But this post is supposed to about her neurology appointment, so...

The neurologist - who reviewed Zoe's MRI when another family was considering adopting her before we even knew she existed - was surprised to see how well she was doing. He mentioned that they occasionally see a child who, like Zoe, "has widespread, potentially devastating damage but isn't affected much by it." As he noted, we only use a small part of our brains - about 10% once we're adults - so it all depends on whether the damage is in those active parts of the brain or not. 

The good signs right now:
  • her alertness and attentiveness and curiosity
  • her love for people-watching, because it shows that she's interested in and learning from her surroundings
  • her stubbornness about taking a bottle from Lee while refusing to take one from me, because it shows a cognitive choice and preference
  • her fight against eating, even after the thrush was gone and feeding no longer hurt, because it shows her memory (i.e. "it hurt last time, so I don't want to eat this time, even though it doesn't hurt now")
  • her new desire to reach for things and grab anything and everything within an arm's length 
  • her great head control
  • the strength in her legs
  • her growth and improvement in the past few weeks
The couple of not as good signs right now:
  • her thighs are tight and spastic, due to cerebral palsy
  • her core strength is lacking, and she's not able to sit on her own
Her current diagnoses:
Her upcoming tests:
  • Thursday morning (August 9): sedated MRI of her brain at Wake Med 
  • August 20: EEG to check on seizure activity (none observed by us or her caretakers in Taiwan, but epilepsy is common with PVL, so it's worth checking out)
  • August 28: follow-up appointment with the neurologist to discuss the findings, though we should get a call from his nurse a couple days after each test to give us a general reading of them
Oh, and we have a well baby check-up a week from today at the pediatrician.

Yep, it's a lot. But it's worth it, for the privilege of parenting this sweet girl...

This picture is deceptive. I propped her up and then hurried to take a picture - she isn't able to sit like this on her own or for any sustained period of time!

2 comments:

  1. Eli had a sedated MRI. The worst part was his feeding trouble and not being able to feed him past midnight the day before/of the test (since he did his best eating between midnight-6am). It's a pain to wait around a hospital with a hungry baby...I also don't recommend combining any bloodwork with it b/c the hospital will consider it a "red flag" and not want to risk the sedation.
    BUT, the actual procedure? No big deal. In our case it was a liquid oral medication that gently put Eli asleep enough to lay there. I got to rock him and sing him to sleep before handing him off to a nurse. We were in the waiting room without him for 20-30 minutes. And then, since it was Halloween, we dressed him up like a dragon that evening and we all went trick-or-treating.

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    1. Robbie had an MRI as a baby, so I have a good idea what to expect... not looking forward to it, though! (Here's my post about that: http://www.dinglefest.com/2009/10/robbies-mri.html) I agree that the worst part was withholding food!

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