We're in Baltimore now, and staying at the Children's House. It is housing for the parents of children with life-threatening illnesses that are being treated at Johns Hopkins. It is an amazing place, and the volunteers and staff are so nice and supportive.
The Millers came out tonight and did a joint interview with the local CBS station here in Baltimore. It was nice to see them again. Their daughter Jodie had a right hemispherectomy when she was 3 years old. She is 18 now and will be heading off to Pennsylvania to go to college in the fall. She and Jessie did a cute interview. It is so cool to see pre-surgery and post surgery side-by-side and knowing the possibilities that may lay ahead for Jessie. There are no guarantees, but the hope is enough for right now.
Unfortunately, Jessie had another bad seizure while the camera crews were still here. They were real cool, and didn't shoot her during the seizure. They got my respect for that. We had to administer Diastat again to stop the seizure, and I was running up to call 911, when her seizure stopped. I thought it kinda odd to call 911, when I was right across from the hospital. Anyway, she is sleeping now, and she won't remember a thing tomorrow. Denise Koch, from WJZ-TV Baltimore, who is a top anchor her in Baltimore interviewed us for about an hour. She seems to be a professional and caring person.
I got a call from Suzi back home, and she told us that People Magazine wants to do an article on Jessie. We are praying that all of this publicity is not meaningless hype. We have no desire for our daughter to be a celebrity. We just want to educate people about the disease, and hopefully make a difference somewhere.
Jessie's face twitched very bad all day today. The worst that Kristi and I have ever seen. Her mouth twitched enough, that it disturbed her speech. The disease is definitely progressing.
Tomorrow morning, we meet Dr. Carson.