Christmas was fun. We got to Rock out with Grandma, Aaron, (home from West Point), Stewart, Jackie and Jackie's clone- I mean sister, Mary Lee. Mary Lee fortunately has waaaaaaaaaaay more rock band experience and taught the boys a few things!...The day after Christmas I had just put dinner on the table when there was an island wide blackout. Not the romantic candlelit dinner I had in mind, but fun none-the-less. 5 minutes into dinner, the baggie of cheese caught fire leading Phil to comment we wouldn't have lasted 5 minutes in the 18th century. True. But that didn't stop me from letting them roast marshmallows in the candles for dessert. As the older ones discovered..they taste best when you let them catch fire then blow it out!
We broke out all the candles and flashlights and fortunately the Ipod dock was charged and ready to provide us with musical entertainment without the rock Band. Actually the kids rocked out to favorites from High school musical and Dora. Lily was lead singer, Phillip provided lighting and Kiera was back up singer/dancer. The boys concluded the evening by watching movies on the portable dvd player. Batteries are good.
Lily had her clinic appointment and hearing test yesterday. Apparently scheduling a hearing appointment requires and act of congress and even when you do manage it- there are few actual records of it. Phil- a newbie to the routine- did not know the only way to get service is to drop names...which is surprisingly effective there. Last time it took me 4 phone calls and about a week to schedule that appointment... And we get to do this every three weeks. Yeah! Cuz I got nothin but time to schedule appointments.... Lily has a cold and there was a significant drop in her right ear hearing, although the audiologist and oncologist both said that this is due to the fluid in her ear and should rectify itself. Me, being the less than trusting sort these days...will worry until the next test. Should probably start trying to schedule that now. And God forbid she have any hearing loss and we get stuck having to be regulars in that clinic too- but I really do think going every 3 weeks counts as pretty flippin regular. She will go in sunday to start hydration and Monday morning she will get her feeding tube placed and then we will start Cycle 3...Yeah? Her counts are all really good. She has become a little pro at swallowing pills. That makes life sooo much easier. The feeding tube will help for the 10-12 days that she has trouble keeping anything down. I'm not looking forward to having 1 more tube to take care of and keep Bella from yanking on when they get into a fight. We are still trying to get her steroids regulated as she goes through her roller coaster of emotions in a 5 minute period. It's like Bipolar disorder meets 'roid rage meets pms in a 3 year old .....aaaaaaaaaaaaaagggggggghhhhhhh. She is still nauseous in the morning and usually throws up dinner- but she overall is feeling a lot better.