Friday, May 16, 2008

All Clear for Surgery

Jessie was released today...horray!! A day early, and Dr. Vining found no seizure activity in her left hemisphere. What that means is that the Rasmussen's Encephalitis is not present and has not crossed over to the other side of the brain, and that surgery is still on for June 11th. I don't like to think about what would have been had this not been the case. Thank God!!

We received a comment on the blog that made us feel close to home. Evidently we have a young gentleman from Aledo High School attending Johns Hopkins University that took the time to read Jessie's log and post his well wishes. Aledo even extends to Baltimore.

I just got word from Nannette Samuelson, that the Ladycats won 12-0 in 5 innings. Awesome News!! She told me that the girls were all wearing pink arm bands for Jessie. Go Ladycats!!!!

Jessie talked to Miss McGaugh's Kindergarten class again this morning over the computer. The kids have so much fun with this, and it makes them feel close to Jessie and visa-versa. It will be so good for her rehab.

Diana Pillas (out-of-state coordinator and councelor) came by again. She is such a sweet lady, and really cares for the neuology kids. Dr. Vining is the same way. Always caring and concerned. The interesting thing about Hopkins, is that the doctors come in, and go straight to the child and then talk to the parent later. They all do this. It is part of the culture and quite refreshing.

Here's a picture of Johns Hopkins Hospital.

The Below Picture is the Kennedy Krieger Institue where Jessie will do her rehab after surgery. We also hope to get into Cook Chilren's In-Patient Rehab for a couple of weeks when we get home.

This is the Believe in Tomorrow Children's House at Hopkins where we have been staying. It is right across the street from the hospital and a lovely place.

This is our friend George W. Bush's house. Since Jessie got release early today, we went over to his house for a visit. We knocked on the door, and the butler told us that he was down in Texas...something about his daughter getting married. Anyway, we told him to let George know that Jessie had been by for a visit, and that we'd be back up in June and try to stop by again.

Jessie loves George W.
I'd actually never been to the U.S. Capital. I'm quite embarrased to say that I didn't even realize that Washington D. C. was so close to Baltimore until a few months ago. I never listened much in geography. It is a beautiful area, and Jessie and I experienced it for the first time together. Kristi had been here twice before on business.
Kristi and Jessie at George's House.






Dad and Jessie at the Washington Monument.


This was a nice trip and helped us get our minds off of all the other stuff. Jessie had a good day.
I had a hard time signing the consent to surgery form and I literally prayed to myself before I signed for God to give me a sign if I shouldn't sign the form. I asked Him to please make the pen not work if we weren't supposed to do this. I signed each paper and then gave them to Dr. Carson's PA.
Today when Dr. Vining was in, I asked her where Jessie fell in the severity range of Rasmussen's patients that she had seen before. "Are we early in the progression? Late?" She told us that Jessie was squarely in the middle. Some were much further along, and others showed less seizure activity. Some had more paresis, others had none. She also said that Jessie's EEG showed that she was, in fact, in a continuous seizure. I honestly don't know how she has done as well as she has with school, t-ball, and living in general. Her right brain is just in a continous electrical storm.
I also finished another book today, called, believe it or not "Saving Jesse", written by the mother of a child with Rasmussen's Encehpahlits from Canada. The story is hauntingly familiar. The main difference, is that this Jesse had no paresis, and lots more seizures.
We also ran into a nice teenage boy from NY here at the Children's house tonight. Dr. Carson is getting ready to remove a brain tumor that caused him seizures. This is a brilliant junior in high school whose seizures robbed him of a full sholarship to a prestigious prep school. I told them that we would pray for him tonight. I bet he has no idea how many people will be praying for him tonight and tomorrow.
We'll be back home tomorrow, and can't wait to get back to Aledo and our normal live.
Cris




7 comments:

Anonymous said...

Alright!! How fun to tour DC and have a blast before coming home!! What a fun day - and you didn't have to spend a 3rd day in the EMU!! Hurrah! See ya soon Jessie!
Caren

Anonymous said...

Greetings from Bearcat Country to those both near and far!

Aledo is looking forward to your return Jessie! We have been busy getting ready for the annual Aledo PTO carnival! It's tomorow inside the Aledo High School cafeteria from 4-7 pm. We want EVERYONE of all ages to come out, as there is something special going on there we are working on for Jessie....just a little surprise, don't want to ruin it, but do want those reading this locally to come and see! So please drop by tomorow!!!!

When you get there ask about the surprise and we'll point you in the right direction.

Hugs and Prayers to ya'll!

Lee Ann Adams
Aledo PTO

Mary said...

I am your Gran's penpal from Ireland, and we've been corresponding for over 50 years. It was she who gave me this address, and I've been following it with interest. What a very brave family you are. I will pray for you all.
Mary

Kathy said...

I am very relieved to hear that all is contained to the right hemisphere and that Jessie is cleared for surgery. May God continue to give you each the strength you need in this battle.

ashesndusty said...

I am so glad Jessie got a good pre-evaluation. I know ya'll will be glad to go home. Take care and Jessie keep being so brave. You are a wonderful little girl.

Paige
Addie Kaye's Mom

Lara said...

Praying for you today that you can come home soon. Praise God that there was no sign of encephalitis on the other side of Jesse's brain!

Anonymous said...

Praise God from whom all blessings flow!

I have been following this story and praying for jessie, her doctors, family, and support team from the beginning.

I was born with brain damage we knew about and we only learned in adulthood also without most of the corpus collossum that connects the right aand left hemispheres of the brain. When they first discovered this, they thought it was new damage and I would be unable to live independently much less return to practicing law, but then they discovered I had lived, been a Natjional Merit Scholarship finalist, and rpacticed law with this all my life. We know that that the brain, especially in children, has infinite capacities to work around damage. I am convinced that the amazing redundancy and capacities of the brain to have other sections take over, tc. are too advanced to have evolved without the work of AN infinitely wise Creator because there are too few cases like this for anything like that to have evolved.

I hope we continue to hear about how Jessie's life unfolds for eyars to come.