The latest on Lila...

Well we enjoyed our weekend home as a female filled family of four. It was nice to be together on our own turf. I wanted to post our Fourth of July frolickings but sadly our computer broke. Braden remembered our old college compy stashed safely under our bed, and that is what I'm using now. I realize that is no place for a computer. Especially one that rightfully belongs in the Smithsonian because it is actually the first and slowest laptop ever. This post is actually a few days in the making. Lila could very well be missing the bus to school by the time it works.

Once we were caring for Lila on our own around the clock we realized how often she was having her seizure-like episodes. It was bothersome to us and disturbing to see. We just didn't feel right about things. I took her to the pediatrician check up on Tuesday morning. I took with me a video clip of one of her episodes to show the doctor. He felt uncomfortable with it and immediately left the room to make a phone call. He returned telling me that a neurologist at Children's Hospital downtown was waiting for me to bring her there immediately. I picked up Braden and Anabelle and we spent the rest of the day there. When the neurologists saw the clip he was also concerned. They did another EEG but she didn't have one during the 30 minute test. She had one right before and right after of course. So the doctor told me to count over the next two days how many she has and also to try to get more of them on tape. However, he called me yesterday morning and told me to bring her in to the hospital. When I got here he said that he reviewed the EEG from Tuesday and found abnormalities. Whatever that means. He said that they are seizures. He admitted her and hooked her up to an extended EEG in hopes of catching them on video stream as well being able to see the brain activity. My count at that point was 18 in about 15 hours. It is terrible to see and they became so frequent. I sat by her bed and pushed a button every time she had one throughout the night. He also ordered several blood tests but they have had so much trouble getting any. They have tried since we got here yesterday and just barely got a needle in tonight. It took eight different people, including a few specialists and two IV therapists. Each time they came they blew her veins and stuck her several times, pumping her skin and purposefully making her cry to try to get some. I could only take so many hours of this. Braden came last night when the seventh person was attempting. He said it is the saddest he has ever been. This morning after they took her off the EEG they did a spinal tap and a skin biopsy. So far the spinal tap has shown that she has an elevated red blood cell count and also elevated protein. This leads them to think the seizures may be from some type of infection. They have started her on an IV for one virus and are awaiting the results to see if she actually has any viruses. That should come back tomorrow evening. The skin biopsy will be used to grow a culture from her tissue which will take about 6 weeks. The neurologist said we are hoping that all of the tests sent out come back negative and that we never find out why she is seizuring because many of the things they are testing for at this point are rare diseases, many without treatments or good outcomes. Life altering is what he called them. He said even when her brain is not seizuring, her brain activity is not normal. They have started her on an anti convulsion medication and also vitamin B6 to see if that makes a difference and also discontinued the reflux drugs. At the other hospital they thought she was having reflux and that was causing her to have desats. They were not concerned with what I thought looked like a seizure. Here, we know that they are seizures and it is likely that that is actually the cause of the desats. Hmmm. Sorta wish we showed up here a few weeks ago. Plus this place sorta rocks. You know, as much as a hospital can rock. They showed Wall-e today and Braden and Anabelle went on a little date together. Braden also discovered they have basketball courts, air hockey, arcade games, and much more. And Abelle gets to be toted around in a wagon everywhere she goes. Which she is eating up. And who wouldn't really?

So back to the waiting game. Many of the tests take weeks to come back so hopefully we can take Lila home again this weekend and wait for the results there. As cool as air hockey is, I choose not to have 34 people come in a night to check on lactation, nutrition, medication, or whether there are paper towels in the bathroom. I know that there are no paper towels at home, I wonder if we could get a roll to go? We feel like we are finally in the right place and that we are working toward a real solution this time. We are so glad she can be seen here. I'm here with Lila tonight and I'm anxious for my 26 pound hopping ball of comic relief to show up in the morning. It is so hard on me to be without her. Lookin forward to her crackin me up in the morning. Without pooping somewhere. That's not all that funny anymore.