4.1.11

Call me crazy (not to my face), but I think Aimee is different since the photo fundraiser. How she would be so affected by it, I can't quite understand. Yet, since that time she has been more energetic, looking around(!) and VERY talkative! I really had no idea that our worry was affecting her at all, let alone to this extent. Wow! Yet another reason to say 'Praise God'! His goodness is never ending.

Wednesday, Aimee and I got to have the TVI (Teacher of the Visually Impaired) come at the same time as the OT (Occupational Therapist). This was primarily to figure out the logistics of her new light box, how to position her appropriately to use it. Yet another thing that will be much easier once we have her chair (and another thing taking up space in our little living room).

Thursday, we went to see Ophthalmology again for an Eye Movement Study. This is supposed to show whether or not Aimee's brain stem is working appropriately. Last time we attempted this study was just before Aimee's 1st Birthday and it did not go well (See post dated 1.8.10). This time, she was able to stay awake and fairly attentive through the whole study. It is a really weird test, in my opinion. They stick us in a dark room with a big screen on one wall. They put special goggles over her eyes with a camera on both eye. Then they spin us around in circles and watch the movement of her eyes. They also would flash black and white stripes on the screen and watch her movements. I felt sick the whole rest of the day from all of that spinning and I knew it was coming! Poor Aimee had no idea what was going on!
From this test, we were able to determine (well the doctors were able to determine) that her brain stem is functioning well. So we have narrowed down the visual issues. Her eyes, vision center and brain stem work great. The disconnect is happening somewhere in the middle brain after the signal reaches the vision center and before the brain stem. This doctor left us with a "huh, it is really interesting, but be realistic, it won't improve from here". I'm choosing to follow what the TVI is telling me...she is very hopeful with the right stimulation her brain will be able to build stronger pathways. Thankful to have realistic doctors, but even more thankful for hope! We want her to be able to not just see, but be able to interpret what she sees and to be able to tell her eyes where to look. That is what she is designed to do!

A few exciting things are coming. One is we are going in on the 11th to meet with the Feeding Therapist. The second is that on the 7th we will have a preliminary appointment with a Neurology Nurse Practitioner to decide if Aimee should be tested with an EEG for seizure activity.