On Monday Bethany made our Neurology trip to Albany. We thought it would be fun to take Jeremiah with us, meet my niece and grandniece at the Children’s Museum but we discovered that it is closed on Mondays, so we decided to go to the NYS Museum instead
Since it is almost a two hour drive we usually plan to arrive about an hour early so that Bethany can eat some lunch in the hospital cafeteria before her appointments. Actually, the food is pretty good in this cafeteria. They offer quite a variety of dishes. I had a Greek salad, Malcolm had sushi, Jerry ate pizza and tried some of Dad’s sushi, and Beth had pizza and a wrap!! Food is very important to Beth especially since she’s been on Depakote! A hungry Bethany is a crabby and uncooperative Bethany! We try to increase the odds that she will behave by feeding her first!!
Bethany cooperated pretty well in the Doctor’s office. I knew that she had gained some weight what with the volumes of food she’s been eating lately, but I must admit that I was pretty shocked when the scale read 128 pounds!! Her pre-Depakote weight has been a healthy 104 for several years now. She is only a tiny 5′ 2″ so 128 is a bit too much I think. Hopefully when she is totally weaned from the Depakote her weight will go back to normal.
We are still waiting for the insurance to approve her annual Brain MRI to monitor any tumor regrowth. After twelve years it would be very unlikely but not impossible. The Doctor is looking into finding a behavioral therapist to address some of her more annoying behaviors. We are keeping her at 10mgs twice a day for Onfi and 900 mgs twice a day for Trileptal. She was never actually on a high enough dose of Depakote for it to have been supressing any seizures so we shouldn’t see any return as a result of taking her off of it. And that’s about it as far as her appointment is concerned!
We drove over to the NYS Museum only to discover that it was closed too. Apparently, for some reason (most likely financial) all museums in Albany are closed on Mondays!!! Well Bethany had remembered that there was a carousel in the museum so of course she was disappointed. She didn’t really comprehend that the museum was all locked up and closed. She actually handled it much better than we thought she would though. We called my niece and cancelled meeting up because we didn’t want to take the chance that Beth might have a major meltdown somewhere.
We ended up having a very nice time shopping at the dollar store, and Trader Joes. We thought all was fine until about half way home. Beth and Jerry had been having a great time video documenting the ride home when all of a sudden out of the blue she started kicking him. We had to pull over and get out of the car until she calmed down. We put Jeremiah up front and I sat with her the rest of the way home with no further incident. I felt just terrible for Jerry though. My heart breaks for him when she does stuff like that.