We made it home last night. I am happy to report that everything went smooth. So happy that we are able to continue in this trial!!! Looking forward to our next trip around Nov. 10th. Julia feels awesome as usual & life returns to normal for a few weeks until we head back, wonderful to be home!!!! :)
Julia had her LP yesterday & everything went very good. She hasn't had any problems & feels great. She has a few blood draws left between tomorrow & Friday but we are still on schedule to go home Friday evening :) In the meantime, we enjoyed dinner out tonight @ Ledo's pizza, a local restaurant that generously treats the residents of The Children's Inn to dinner free of charge. Their pizza is delicious!!! Tomorrow afternoon there is an outing scheduled to Buttler's Orchard, a local apple orchard & pumpkin patch. Julia is really looking forward to that, especially the hayride :)
Julia & I had a wonderful weekend. We left the hospital Fri. afternoon & didn't have to return until tonight. As usual we met some new friends. So Julia has spent lots of time socializing, like the social little butterfly that she is :) We took a bus to the mall, went for walks, did a little baking. It was very refreshing, so now we are ready for the next few days :) Tomorrow morning she will receive the cyclodextrin during her LP & then we will probably spend most of the day resting in the hospital.
Sorry to keep everyone wondering what is going on. Truthfully, we spent most of the time since my last post waiting to hear news ourselves. The FDA finally released the hold & we are back on track with a lot of revising of the protocol. For starters they are no longer giving the medicine directly in the brain via the Ommaya. They are going to give it via a lumbar puncture into the spinal fluid.
So we arrived back @ NIH this past Sunday. Our flight was great! Julia had some baseline testing on Monday & then the first of 2 lumbar punctures during this visit, on Tues morning. Everything went awesome. during the 1st LP she only got saline, but next Tues she will get the cyclodextrin. Between now & then she will have a few more tests & blood-draws, but we should have quite a bit of down time this weekend to enjoy this beautiful weather :)
