Monday, March 10, 2008

Back From Baltimore


We just got in from Baltimore tonight. We met with Dr. Vining and Diana Pillas at Johns Hopkins today and as suspected, they confirmed the diagnosis of Rasmussen's Encephalitis. They believe that surgery is the best treatment for Jessie's type of seizures and this disease. There are other things that they have tried, but with little success. They were both very compasionate and caring people, and straight forward with dealing with us and Jessie. They spent 2 hours talking to us and Jessie.

They have agreed to take her case, but it is entirely up to us whether or not a hemispherectomy is performed, and to some degree, the time frame. They don't feel that it is as urgent as Cook's does.

Kristi and I feel, with Jessie's decline, that the sooner we get the surgery scheduled the better. She has very limited use of her left hand and has continuous twitching in her left arm and hand and now almost continuous twitching in her eye.

Last night, we stayed with Lynn, Al, and Jody in Baltimore, and they were very kind to us and spent quite a bit of time talking to us about Rasmussen's, hemispherectomy, and all the emotions that go with them. Jody, their daughter, had a hemispherectomy approximately 15 years ago. She is 18 now. Jody took Jessie over to the park across the street, and now Jody is Jessie's buddy. She talked about her a lot on the plane ride home. We watched lots of videos of Jody, and she is quite the dancer.

We also met two other hemispherectomy patients up at Hopkins. Mary Beth and her son Dylan were there for a check up, and they spent some time talkin with us and sharing some pictures. Dylan is 15, and in high school. He had his surgery when he was 2 or 3, as treatment for a stroke. He is doing very well and kicks for his football team and lettered in bowling and is on the summer swim team.

We also met Jon, Holly, and Avery. Avery just had her surgery, and was getting the stitches out today. They are going home today after a long stay at Hopkins.

We sure appreciate all of these nice people taking the time to get to know us and letting us get to know them. They were all so supportive and caring.

1 comment:

Janet Cunningham said...

Hi, I want you to know that Jessie and your whole family are in my prayers. God bless you as you go forth with the surgery and the recovery. I graduated with Gary and Nancy and have known Gary since our junior high days at Johnson Junior High. Janet Cunningham