We took Maggie to the Epilepsy Foundation Camp in Estes Park on Sunday. Just from the few hours we were there, it was quite insightful to see Maggie talk with other kids like herself about doctors, medicines, etc. One of the girls bunking with her was on the ketogenic diet. Needless to say, we can’t wait to pick her up on Thursday, but we know she is just going to have an amazing time. Can’t wait to hear the stories.
After dropping Maggie off at camp, Kathi and I took the other three kids out boating around Lake Estes. We had a blast.
Prior to camp, Maggie had some doctor appointments at Children’s. Her doctors are quite concerned with Maggie’s weight loss. Back in November 2008, she was in the 50th percentile. She has dropped below the 10th percentile. She’s not eating because of the smells, which is usually indicative of temporal lobe seizure activity. Because of this drop in weight, Maggie’s doctors want to do some testing and monitoring about a week or two after camp. She’ll be hospitalized for a couple of days and need to be off of meds again.
We have decided to drop neurofeedback therapy. Because of the above and not seeing any significant improvement with the therapy, we felt it best to remove an extra stress to Maggie and our family. The weekly trips to Boulder were fun, but it sure will be nice to get back to a regular schedule for both work and family.