In summary: when the IT trial first opened in the summer of 2009, we went to UNC to find out if Trey’s IQ would qualify him for the trial. It didn’t. His IQ was too high. We went back two more times over the course of a year, and still his IQ didn’t qualify. In January 2011, Trey’s IQ qualified for the first time. Once a child’s IQ qualifies, the next step is testing to see if the child’s intractanial pressure qualifies, which is tested via lumbar puncture, aka. LP. The original LP test dates we had in May were back up, so that if the child in front of Trey didn’t qualify or randomized to no drug, Trey would have been up. The boy in front of Trey qualified and randomized to drug, so our trip was postponed. The second time (in late June to early July) our trip was postponed because the trial was put on hold due to problems with the device. The hold has now been lifted, so finally, we get to go back down. Trey’s LP is on August 19. We’ll be in NC from Aug. 14-20. The only thing that could stop us from going down this time is if Trey gets sick and you can bet that I will be doing everything in my power to keep him healthy right before and during the trip. Until then I might not be washing hands quite as much so he gets all the bugs out of his system before we go. I’ll update with results.
With love and gratitude for your support,
Deb
