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Well, I feel as though I don't always get information out in a timely fashion and then manage to tell some members of the family one thing (and forget to pass information on to others). So, here is one way that I have seen people managing to pass information quickly and without repeating it 50 times (you know how I feel about efficiency!).

It's a little hard to see in the picture, but for those of you who missed Olivia's black eyes from her encounter with the front of the couch, I've included a shot (oh how I love the ER!)

The new year is already off to a bang. We traveled to Louisville, Kentucky the first weekend this month to take part in a research study for Olivia's condition (Chromosomal duplication of 7q11.23). We found out there are about 25-30 in the world (this is an estimate by one of the specialists and is generously accounting for cases we are not aware of yet). The assumption is that there are several more cases in existence (up to 1 in 7500), but that they have been diagnosed as something else, like autism.

During the weekend, we were able to get a full battery of psychological, cognitive, speech, and adaptive testing done on Olivia (and Jocelyn--they went ahead and did all the testing on her as well for a comparison. We were greatful because it kept Jocelyn happily engaged throughout the weekend. As she said "I have to go see ANOTHER person--everyone wants to see me!" If you think I'm misquoting, you don't know Jocelyn very well). Anyway, Jocelyn's evaluation came out great--"a little wiggly, but nothing she won't grow out of--and we have no concerns because she is listening the entire time she wiggles". Olivia did a great job participating the first day, but the second day was harder for her as she was EXHAUSTED. Day one started at 0900 and testing ended at 1730. Then, the school sponsored a dinner so that we could all visit with other families with the same diagnosis. This was special as none of the families had met in person before, although we have been emailing back and forth for about 6 months. Day two began at 0900 and we left Kentucky at 1530 for a long ride home. We didn't make good time by pre-kid standards, but we were able to get from Louisville to Columbia in 6.5 hours (which we were proud of, since there were 3 stops to be made!).

So, after the weekend of testing, we are now setting up appointments (and getting on the waiting list) for the Behavior Support Clinic at the Autism Center here in Columbia. We found that it would be helpful for us (and was strongly recommended) to get assistance. The first available times are in March.

Here is the best picture we could get of all the children (and one adult) with the 7q11.23 duplication that were in Kentucky. Olivia had the hardest time posing for the pictures--this is the only one she's not crying in (we settled for her laying on the floor).

With this new information, I have also withdrawn my status as a graduate student at MU. I was excited to continue my education, but am definitely able to use my time in a more appropriate place (at home). Jason & I have started home-work time after dinner and it takes two of us (a third and fourth person wouldn't hurt). We've actually only had one night of it and the only thing we can say is 'surely she'll (Olivia) wear down one night soon and it won't be such a battle. We're determined :)