Catching Up Part 1: Adelaide and Our trip to Seattle.
I have been so busy living my life the past couple weeks that I haven’t had time to write about it, but I’m going to catch you up. Adelaide has already been home for three weeks now, and she is doing pretty well. She has some side effects from the steroids and seizure meds, but she is mostly herself. She started on a chemo drug called Ara-C that has been shown in clinical studies to significantly improve the lifespan of GME patients, so hopefully that will be successful. It is injectable, so I have to give her shots at home twice a day, four days per month. Now that this treatment has started, we will start to taper her other meds next week. I’m nervous about that because there is a risk of her getting worse again, but we’ll just have to see how it goes.
In other news, we took Falco to Seattle over Labor Day weekend to go to PAX. The only other time we have travelled with him was our trip to Mississippi when he was eight months old, so we were nervous, especially about the flights. Our worries were not completely unfounded, as you might expect, since we were going to be trapped on a plane with a very active 21-month-old. We got through it, but not without a lot of squirming and whining and seat kicking and crying about ear pain and squealing every time the PA system turned on, etc. We couldn’t really engage him in any activity; he wouldn’t sleep; and on the way home he got so frustrated that he started hitting us. We couldn’t do anything about it for fear of causing a meltdown, so we had to just take his bad behavior and all be miserable.
The good news is, when we were actually in Seattle, he did great. He slept well in the Pack and Play the hotel provided, and he was in a pretty good mood and excited to see new things. We couldn’t really do much of PAX because it was crowded and filled with a lot of stuff he wasn’t allowed to touch, so we spent a lot of time in the room. Overall, with the tortuous air travel, such a quick stay, and missing most of the conference, I don’t know that it was worth the trouble and expense. It was fun to go be with a bunch of fellow nerds for the weekend, but we were all happy to get home.
