The smiles in between all the pain help us get through...

....Hopefully the doctors will find out what the problem is so that she can feel better soon. We are on the phone with every expert at OHSU, they are working hard and we are pushing them along for sooner appointments and more advise....

Yesterday was her eye appointment. Dr. Weleber says he sees nothing wrong with the structure of her eyes or the nerves behind them, and she is too youg to do some of the other testing yet. He did agree that she is not tracking and does not seem to acknowledge any of her suroundings yet. We are pretty sure that she sees light and responds to bright lights and notices when it is dark. The eye doctor believes it may be neurological. Tomorrow we have a genetic neurology appointment. Hopefully they will be able to help us move in some direction. Her previous scans (CT; EEG; and MRI) didn't show evidence of seizure activity, tumors, or leisions. The only thing they have to go on is that the white matter in her brain looks notably underdeveloped. They don't know what that means yet if anything...

At this point we are not sure if the eye problems, white matter, and seizure like episodes are related or not. All we know is that Sydney is in pain, and is not tracking with her eyes. Her eyes have been a concern since she was about two weeks old, but the painful episodes started when she was about two months old and have gotten progressively worse. At their worst they are about a minute apart, and at their best a half hour apart. They never let up. She is very tired because they wake her up. However, a week ago Scotty and I noticed that if we catch it in time we are able to fold her up like a potato bug and sometimes that lessons the duration. We started to think that maybe she was having a cramp in the back of her neck and upper back, since she arches and becomes so tense with pain. But we try not to get too excited about any ideas so that we aren't so disappointed when we arew rong. We have had a lot of support ad that has been very helpful. All we want is for our baby to feel better. I started this blog because it is hard for me to keep up with phone calls especially when we don't know anything. I will keep you all updated as soon as we hear anything. Thanks for all your support.

Love, Amber