After I wrote my post last night, the pediatrician returned my call. She apologized and said she goes out of state twice a year and leaves her pager, and yesterday was one of those days. She said I can have her paged any time, even if she isn't the on call doctor. She is amazing, in case I haven't explained that to you all lately. Amazing. If there are pediatrician of the year awards, I need to nominate her, because WOW. She is wonderful. She said she would call and get the MRI results first thing in the morning and call me. We were walking around the hotel (which isn't a hotel as much as a built in zoo/theme park) when she called. I ran back into the lobby so I could hear, because the waterfall was a tad noisy.
The MRI wasn't clean. She has lesions on 3 of her lobes; both parietal lobes, and her frontal lobe. This explains the speech problems and motor function difficulties. What is unclear is what the lesions are and what is causing/has caused them. She mentioned metabolic diseases, in-utero infection such as CMV, and even stroke. She said there were no calcifications on the CT scan so stroke is unlikely, but not impossible. She couldn't get in touch with our current neuro, but she did contact a friend of hers who is a neurologist in the same clinic. She has been discussing KayTar with him for a while now, and she is referring us to him when we return. She and I both feel like the current neurologist dismisses our concerns and already has his mind made up. She said that when she calls him she has to get everything out in one breath because as soon as she takes a breath he says "Oh, Dr. I think everything will be okay." When I saw him in the clinic I felt like it was a totally wasted appointment because he already had his mind made up. The pediatrician said that she trusts the new neurologist and thinks it is a good idea to get more eyes in there. He will take good care of KayTar because he is friends with her pediatrician.
When we return home, KayTar sees the opthomologist on Monday, and then later in the week we will see new neurologist. After he examines her, she will be admitted to the hospital for testing. They will be doing more blood work, clotting tests, an extended EEG (24 hours), an MRA to look at her arteries/veins in the brain, and whatever else strikes their fancy.
I am thankful the MRI came back showing us something, even though it felt like a punch in the gut. If it was clear, we would be lost, treading water, no place to go. Since it isn't we have a direction, things to look into, tests to narrow things down. I am thankful for this week, the break from everything, because when we come back it starts up in full force. I am thankful for our pediatrician and her genuine concern for us and KayTar. I'm thankful that we aren't quite as lost as we were yesterday.