Sunday, August 01, 2010

Yearly Neurology Follow Up

I am beyond thrilled that one year has passed without having to see Dr. Ness.
As much as I adore Dr. Ness, only seeing her once per year means that Addie is doing great! Julien went with me this time and was as pleased as could be that he had access to a computer to play while waiting - the whole five minutes that we had to wait!
(We are not going to talk about his hair. Remember...we pick our battles)
Dr. Ness was as thrilled as always with Addie's progress.
There was so very much to talk about and trying to cram in all of my questions and updates in one visit was exhausting.
Just as we were finishing one topic, we jumped to another and then another, all while Dr. Ness was busy researching the answer to another question.
While Dr. Ness had her visual attention focused on the computer and her ears focused on what I was saying, Addie was busy covering Dr. Ness with stickers.
Addie had the best time putting stickers all over Dr. Ness's arm and leg and enjoyed playing with her green shoes.
She was really bordering on the verge of harrassment, but it kept her quiet and occupied.

Addie stole the stethoscope from Dr. Ness and thought she was just the cutest thing walking around with it on.

Julien was more than happy to help with the exam and was a huge help to me! I decided to condense the information to share about this visit.
Mainly because I can't decide what I think about it.
To summarize:
Dr. Ness is resubmitting Addie's MRI and bloodwork to Dr. Dobyns in Chicago.
Whatever we find out from him will not change anything.
This is more of a fact-finding mission because there have been discrepanices all along.
Not with the diagnosis of Microcephaly itself, but with the underlying categorizations and the random mention of Dandy-Walker and Pachygyria in radiology reports.
Whatever Dr. Dobyns says will not make a difference.
It will just possibly clarify details and provide a more detailed scientific explanation of Addie's brain and diagnosis.
It doesn't matter what science determines, GOD is in control, always has been and always will be.
I stopped midway through signing the authorization for release of information to Dr. Dobyns and had to think about it.
Does it matter if we know every intricate detail of Addie's brain?
Not necessarily.
It won't change her and it won't change how we treat her medically.
There is something about it that is nagging at me and makes me sick to think that there would be information come to light that I wish I never would have known.
Some things are better left alone...but what if the information we find out in some way helps someone else?
This is emotional torture.
So here we are in our Wait and See World.


jennohara said...

It sounds like the appointment went great! I love how Addie was covering Dr. Ness in stickers! :) Typical little girl!!
I know what you mean about finding out something that you dont want to know, but you could also find out something that, like you said, could help someone else, OR, is a very positive finding! Addie is such a miracle already, you never know what kind of curveballs she's going to throw "them".

I'm always thinking about you guys!