B's night in Wolfson

Travis and I checked in with B at 1:00 Wednesday at Wolfson for a 24 Hour EEG..We waited for a while in the lobby before they called and were ready for us upstairs..We made our way up to Bluebird lane on the 5th floor finally and tried to get settled for the night..The tech come in to get things ready to to start putting the what seems like hundreds of wires on B's head..We wrapped her in a sheet so she couldn't pull off what had to go on..We brought her baby praise dvds..She loves these movies..We put one in first thing when we got there..We thought it might help calm her..and it did..So after about 30 minutes everything was set and now we were to wait and if she had anything that could be a seizure we were to push a button..( and nothing happened)The DR said even though nothing that we saw happened he would still get alot in info off the test..she handled this like a champ ..so calm..she played with the toys we brought and watched the movies..It was a long night ..she was restless in a strange place and had to stay on the bed so the camera could see her all the time also..

We had awesome care..Wolfson is a great place for sick kids..We are so thankful they are so close to home..

The next morning early we were watching the helicopter land and Her neurologist came in..He told us the first two blood results he had ordered a couple of weeks ago were back and NORMAL..so what does that mean I ask that she doesn't have leukodystr0phy? He said no, we still have to watch for that...there are so many different kinds of this dieses..He said to call Tuesday and we would talk about the EEG and what if anything to do next..

With leukodystrophy kids regress ..so we watch for anything like that..I don't think it could get any more nerve racking then to watch B and think well yesterday she was doing this and today she can't and not panic..But we are doing our best to just be Normal..

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