A Daily Report and Yesterday's News

Caiden had an long bus ride home today. His bus had to pick up kids from another bus that was broke down. Normally he gets dropped off at 4:30 pm but didn't make it home today until 5:45. He seemed to take it all in stride though telling me that the ride was a little different today. I explained to him what had happened and said that is was a kind thing for his bus to do...to help out others in need. He agreed. It didn't leave him much time to play though before bed time. Avery had a pretty good day, though she had an episode this evening that required Diastat. She is resting very peacefully now. She and I went to visit friends of ours from church today while Caiden was at school. We had a very nice visit and lunch with them. It is really nice to get out of the house. I am still adjusting to not having Caiden with us though. We have started decreasing the Dilantin Avery is taking...we have to get her off at least one med before surgery or we may be years getting off all of them afterwards as the weaning schedules are really stretched out following surgery. We chose the Dilantin because it has the worst possible side effects and we don't really believe that is has that much of a therapeutic effect for her anyway. I have to let her neuro know on Thursday when we go for her nuerology check-up...we didn't want to wait for her OK on Thursday because we wanted to get started ASAP so that we have enough time to complete the wean before surgery. Hopefully she will be agreeable because we are going to do it anyway. Enough is enough with the meds! We had a great group of caring and generous friends over from church (Irvington Presbyterian Church, a.k.a IPC) yesterday for a training session on how to take care of Avery. They all have volunteered their time to come sit with the kids while Jon and I have the occasional night or day out. I can't even describe how much of a blessing this is and how grateful Jon and I are to have such a caring and supportive church family and to our Associate Pastor, Galen Schwarz, for aproaching us with this idea and then spearheading the organization of the training session and lunch catering for it. What a blessing finding IPC has been on our lives. (If any of you are reading this...we thank you so much for your generosity!) Check out the website of our wonderful church family http://www.irvpresby.org/. Play the video to check out the newest members...you might recognize a familiar face or two! Other than that, not a whole lot new to share. We are busy with therapy and getting ready for our trip to Johns Hopkins next week. Please keep Avery in your thoughts and prayers, as well as all those families struggling with a child's illness or disease. Till next time...Cheers!