Hello All,

Well, we are now 5 days from surgery (Monday, June 7th, 8:30 am) and doing well...as well as can be expected. Mike and I had a consult with Dr. Zupanc (Epileptologist) today to go over a few last minute questions and to put our minds at peace.

We discussed Katie's bilateral memory and how that would be affected post surgery and why she feels the right side activity will subside (that is her hope) after the left focus is removed. They see opposite side activity frequently when there has been a long term/strong pathway created like in Katie's case, with a cross over to the opposite side during the seizure. She is hopeful that the right will "fade".

The Epi said Katie has a better than 80% chance of being seizure free. That put smiles on our faces for sure. Katie was taking her Biology final exam today while we were at the consult.

I have a story to share regarding a family that we have come in contact with, whose daughter is the same age as Katie and had E surgery last January ('04)...and has been seizure free since. A local radio station held a telethon/marathon for our Children's Hospital of Wisconsin last week, for 72 hours. They ended up raising $1.4 million! In 72 hours! It was amazing! Mike and I donate monthly, every year, through this telethon. Anyway, this year they made a point of having a TON more families that have had success through Children's and loses (deaths) as well. There were 2 families that were on that spoke about E surgery, the one I mentioned and another teen girl who had a Right Hemispherectomy. Both have been seizure free! Our Epi was also on the radio, on a separate day, discussing the Epilepsy Clinic and the Monitoring Unit. So, the family with the daughter Katie's age, was from the city I grew up in. At the end of the interview the DJ's thanked the family for sharing their story, and mentioned them all by first and last name. I wrote it down and looked in the phone book of the city I grew up in and their names were in there! This family was on last Thursday, and I just got the courage last night (Tues.) to call, and they answered!

They spoke with me for about 1 1/2 hours. We shared stories about our daughters and what they each have been through all of their lives. They started with the Epi last May ('03), just like us. AND YOU WON'T EVEN BELIEVE THIS IF I TELL YOU...Katie and Ashley have the SAME birthday! They are about an hour apart in age!!! Ashley is an hour older than Katie! We couldn't believe it. So, as we neared the end of our conversation he (Ashley's dad) told me he was a Pastor and asked if we could pray for Katie together. WOW! I was blown away. They said they would add Katie to their prayer chain and to please call them, at some point, to let them know how things went for Katie. They also said they would love to have the girls meet, maybe this summer some time. Katie and Ashley will talk to each other on Friday, via the phone. Isn't that something??? You never know, unless you take a chance...it was meant to be! AND another thing...this dad is 3 years older than me and WE went to the same school, kindergarten through 9th grade!!!!!! I moved after that. Our elementary and junior high were connected. I don't remember him at all, because he was older. Isn't that funny! Old home week!

We have pre-op tomorrow at 3:00 pm. We also found out today that some of the EMU nurses, have been asking our Epi's nurse practioner, when Katie will be in. That put a much needed smile on Katie's face!

Katie went 16 days without a Complex Partial seizure, and has now had 3 in the last week. I'm sure it is the stress of final exams and surgery. Dr. Zupanc didn't seem concerned, knowing surgery is around the corner.

For the most part we are fairly calm. I'm sure when I write for the last time here on Sunday night I will have an upset tummy and will be getting a little nervey...at this point, we just want it behind us so we can look to the future.

Talk with you all soon,
Vicki

Vicki,
wow that is soooooo cool that you got to talk to them and it is good to hear of someone doing well after having e surgery I hope things go that good for katie know that I will be thinking of you guys like always and praying that everything goes ok. Please update us as soon as possible after the surgery to let us know how things are going.

I am so happy you posted. I have been checking the site for news since the surgery date was getting close. I remember your being concerned that maybe Katie wouldn't be able to have the surgery due to the memory concerns you had, and I didn't know how the visit turned out. I am so glad that hurdle has been handled and hope you minds are much at ease now. I found that finding someone else who had had the same surgery at the same place as I was going to really helped me so much. I am happy you found the other family with the teen Katie's age and were able to talk to them. That does help sp much! I also think that after Katie's surgery she will greatly benefit from having someone to talk to who has been through it and has very possibly experienced the same changes she may experience. That, to me is a real Gift! I hope they stay in touch. You will have new friends as well with her parents. Things surely have fit together very nicely as if they were meant to be as you said. I love that about the EMU staff asking about Katie. From my experience with my VEEG and surgery, the patients in the EMU are special to the EMU staff. I surely do know, they were very special to me! They came to the Reunion held at MCG for the surgery patients. Try and begin to ease some of the pressure you may feel so that when it is done, you won't be left with such a high pressure point to come down from. It is easy to feel the drop or let down in some cases. I'm sure the counselors have been over this with you I also am very glad that Andrew has been included as he has been. I wish so much that my family had been involved. I know you will be busy, but if you get a chance, drop us a line here. You may be able to find a computer somewhere, maybe in the library or the staff will know where one is. Y'all will be in my thoughts and prayers. I look forward to your post on Sunday night. Phoebe

Vicki and Katie... I know I haven't posted much, but I have kept updated on you two!! I'm glad to hear that everything is still moving foward, hard to believe the time is here already!!!

Amazing about the family you talked to. I'm sure they helped put your mind at ease even more!!!

Good luck with everything and I'll continue to keep your family in my prayers!!! :wave:

Lisa T

Hey Vicki and Katie!

Best of luck for surgery on Monday, you're in my prayers and Scotland is rootin for ya! Show 'em how it's done! :bouncing:

Eilidh
x

Prayers that all goes very well with her surgery!


So neat that you made that connection with Ashley's parents! Hoping the girls can forge a friendship at some point. It is neat when you talk to someone who understands the path you are about to head down>


So neat the nurses are asking after her! Makes kids feel so good when they are thought of and remembered.