I haven't had much of a chance to write here. Things have just been so hectic right now. My daughter and her 2 kids moved to Oregon in April and have been staying with us. Ally is 20 months old and Gavin is 5 years old. He also has Aspergers so it's been quite the challenge meshing everyone together.
All and all, it's gone surprisingly well. Taylor was a little put out at first because she could no longer have complete and total reign over her kingdom (her room) but she has adjusted well. She absolutely loves helping to take care of Ally. It is a little hard for Taylor when we go to the park. She still has the mind of a toddler and wants so badly to play on the playground equipment, but she is just too big. They don't think of developmentally delayed "children" when they put these brand new play structures in. Sometimes it's really hard to sit and watch her want to play so badly and she just isn't able to.
I am in the process of deciding whether or not to put Taylor on the new seizure medicine that was just approved for Lennox-Gastaut seizure disorder. Looking over the side effects of the drug makes me very uneasy but then I am not sure how long we can just let her have so many seizures every day. There is nothing to say that this drug will or won't work but it's just a really hard decision. She can't tell me how the drugs make her feel and I don't want to mess her up any more than is absolutely necessary. She is already on 3 other seizure medicines. I would hate to think of how many seizures she would have without those drugs. There is a 50/50 chance that the medicines aren't really helping at all or it's the reverse and we have no idea how many seizures they stop.
I hate these kinds of choices. There is nothing that seems totally right.