The Results of Jim's Seizure Surgery

Jim had his first seizure surgery Tuesday to place the grids, the surgery lasted 6.5 hours. It went well his grids were in place he spent a day in ICU and then stayed in the hospital for a week being monitored. Apparently his brain did not like the grids being added he was having horrible headaches and bouts of violent vomiting. He had several wires coming out of his head attached to monitors so he was limited in how far he could move, it took two of us carrying wires and equipment and wires just to go to the bathroom and leaving the room was completely out of the question. Jim had lots of seizures up to 10 a day. That is good they wanted him to have seizures so they could see where they were coming from in his brain. They kept saying that they weren't getting the kind of information that wanted from his seizures. Sunday night they started testing his brain to see what functions were in what places on his brain, they had him talk, count and repeat words while they put small electric charges through different areas of the grid. They did these tests for hours, all Sunday evening, and most of the day Monday. Monday evening Jim's Neurologist, Neurosurgeon and Neuropsychologist came in and gave us the results: they couldn't find a focal point for the seizures, the seizures seemed to be coming from all over his brain, not just one place, that is bad because they couldn't remove the "Spot" or "Spots" where the seizures are coming from. However there was a large area of brain tissue that was damaged from previous brain surgeries and radiation. Jim's Neurosurgeon said logically the area of damaged tissue should be where the seizures are coming from but, the tests don't show that. They have tested the area of damaged tissue and all the brain functions that are normally in that spot have moved to other parts of the brain. However they can't test for everything and they are think his vision might still be there along with other things that they may not have tested for. They said that we have two choices for the next mornings surgery: we could go in remove the grids, do nothing else, and leave him with seizures, or we could remove the damaged tissue, hope the damaged tissue is causing the seizures and hope that removing it causes no problems. The doctors could give us no recommendation one way or another. It was totally up to us and we had to decide before his surgery scheduled at 7:00 the next morning. Not an easy choice but, my husband, Jim and I all separately came to the same conclusion: to go ahead and remove the damaged tissue and hope it helped somewhat with the seizures without causing damage, or in Jim's words "well we've come this far, we might as well go for it". It was a tough choice. His second surgery was much quicker about 4.5 hours. The morning after the second surgery I went to the ICU to see him and to my surprise there was Jim sitting in a chair! eating solid food! he was already off oxygen, off oxygen no catheter, no brain-drain and ready to go to a regular hospital bed! He looked so good.

The results so far:
The good: has not had a seizure since a few hours before his second surgery! He does not have any noticeable deficits from the surgery. He seems much more "with us" mentally and has not had any episodes of his "eyes going weird"

The not-so-good: We think he may have lost some more of his vision, he said that there is no change but he seems to be having a more difficult time seeing things. It is hard to tell because he has such bad vision before. He is leaking CSF (Cerebrospinal fluid) into the the side of his head where they did the surgery. The side of his head resembles a large water-balloon. He won't or can't move his head and keeps it tilted to the side. I assume this is because of the CSF leak. We have Dr appointments tomorrow to hopefully find out more.

Jim's seizure surgery

Tuesday, the 28th, in just a few days, Jim is going in for the first of two brain surgeries. He has already had 4 brain tumor related surgeries so we know what's it's like. Almost 3 years ago he started having seizures. He has multiple seizures daily. They think the seizures are coming from 2 different places in his brain. We've been trying different seizure meds and nothing has worked.

On Tuesday they’ll open his head and place a "grid" directly on his brain to monitor and find out exactly where the seizures are coming from and what other functions his brain does in those places. they will leave him in the hospital and monitor him for a week. On the second surgery scheduled for March 6th, they’ll take out the grid and hopefully remove the seizure causing brain tissue.

We will be fasting and praying this Sunday the 26th for Jim. You’re welcome to participate.

Valentines

It was Valentines Day yesterday, I LOVE Valentines Day, I mean how can you go wrong with a holiday that celebrates love! Not just romantic love but, I like to show love for everyone. I like to stretch it out as long as possible. On Valentines Day we make it all about our family, and other loved ones. I spent the day making valentines for my family. We did our "traditional" Fancy valentines dinner with the kids: a candlelight steak dinner at home with all the trimmings, chocolate dipped strawberries, homemade valentines and heart-shaped boxes of chocolates for everyone! My husband gave me some yummy brown leather boots, (how did he know) and some heart covered socks to go with them. We went for a moonlit walk. I'm looking forward to Friday when my sweetie husband will take me out for a nice romantic dinner.

My shy little boy.

My 14 year-old had the warts burned off the bottom his size 14 foot. First he wrote smiley faces and notes to the doctor on the bottom of his foot. Then he “stole” a pair of blue doctors gloves and wore them out of the doctors office holding his hands up like a doctor trying not to touch anything. He was getting so many strange looks from people and he was embarrassing me, and no: he wasn't on any medication.

He is the kid I think of as shy.

today is a gift

Do you ever wake up in the morning with that Christmas Morning feeling? You know that feeling of anticipation for some wonderful surprise that lies in store for you that day that's the feeling that I had this morning. Not that I thought that I was going to receive a gift today but, that today is a gift. It will be full of surprises and possibilities it can be a good day or a bad day it is all up to me to decide and make it the kind of day I want it to be.

I can see clearly now...

I find that when I get ready for the day and look at myself in the bathroom mirror that I like he way I look much more before I put on my glasses. Not because my glasses make me look bad but, because they make me see better.

Just a reminder...

Do your best and let God do the rest.

just a little worried.

I really think I am loosing what ever is left of my tiny tiny little mind. I have been so extremely stressed out about Jimmy's upcoming surgery I can barely function. I can't think straight I'm cross all the time. AAaaaggh!

Part of me just wants it done NOW and for it to be over with so I can stop thinking and worrying about it, the other part of me NEVER wants it to be done. I mean it's 2 BRAIN SURGERIES, 2 Stays in the ICU, and at least 2 weeks in the hospital for Pete's sake! How can I do that to my Kid? to my family? But, then on the other hand it is our last hope to get rid of Jimmy's seizures, It would be heavenly for him to go even one day without a seizure. And the doctors tell me every time he has a seizure he could be causing some brain damage and he is having 3 or 4 seizures a day lately. But, then on the other hand they are REMOVING PARTS OF HIS BRAIN!! does that sound like a good idea to you? I don't think so. But the doctors are mostly kind of sure that he won't suffer bad long term effects of the surgery, they think,... except his vision, he may lose some more of his vision, what little he has left. So I have been just one little teeny weeny little itsy bitsy bit STRESSED OUT!!!

So, I got a call yesterday from his doctor asking if they could delay the surgery one more month AAAAaaaaghhh.

NOPE.

something good everyday

It's not always easy but I'm gonna try to find the good in everyday. I made this sign as a reminder to myself.

appetite

I made Jim a sandwich for lunch yesterday, he ate it, said he was still hungry and asked if he could have a bowl of cereal. I told him he could have one bowl. A few minutes later his older brother went into the kitchen and started laughing: there was little Jim hunched over a mixing bowl full of cereal and eating it with a serving spoon. He looked up innocently and said “what?” yep, he ate the entire bowl of cereal. I don't think he will be little for long.

Have Yourself a Merry little Christmas.

It's beginning to look a lot like Christmas... Come on Sing it with me.. Glistening once again With candy canes and silver lanes aglow... no snow here for Christmas yet, ..I'm dreaming of a brown Christmas... But, Christmas starts in your heart, not out the window, so I'm gonna just get myself a nice cup of hot cocoa and a cookie or two, read Luke chapter 2 and listen to some Mormon Tabernacle chior Christmas music. Because... It's beginning to look a lot like Christmas, Soon the bells will start, And the thing that will make them ring, Is the Carol that you sing, Right within your heart.

Have a fantastic Christmas! make some good memories, make this Christmas one that will stand out in your memory for the rest of your life, and make sure they are good memories. Do something you are proud of, something you want to write home about. Do what you can to make Christmas better for those around you. YOU have been given great blessings, go out and share them....
And Have Yourself a Merry little Christmas now.

letter to the world from a missionary mom

My oldest boy just left on a mission. I really want to pin a note to his shirt...

Dear World,

This is my precious boy, please be kind to him because he loves you, he loves you enough that while other youing men his age are going to college, dating and partying he has volunteered to forgo all that, spend his life savings and dedicate the next two years of his life to bring you a gift. This gift is a simple message and a knowledge of something so wonderful that it has made his life better and given him peace and joy. All he wants to do is share this with you. You may choose to reject his gift, that is your choice, he knows that. But, how will he know who wants this gift if he doesn't ask? So if you are not interested in what he so lovingly offers just smile and say “no thank you” you really don't need to be mean or rude to him, Is being kind to someone who loves you so much such a bad thing to ask? So as a favor to me, his mother, please be kind to him?

With Love

A Missionaries Mom,

Melody

Jim's choice

We told Jim he would have a vote in the decision on weather or not to have the surgeries to help his seizures. We thought it would be wrong to force him to have the surgeries. We went to the doctors to talk about it Friday, at the appointment Jim was saying “no way I don't want any more surgery.” He didn't even want to talk about it, he would get upset if we even suggested talking about it, so we told him when he was ready to discuss it to let us know. Well last night, just before bed, he said he wanted to talk about it, he wanted Dad to make a list of the pros and cons and we talked about it and prayed about it and Jim decided that he wants to do the surgery. So this morning he woke up at 6am wanting to know if we had scheduled it yet. He just wants to do it right away. I do feel better about having the surgery done but, it probably won't happen for a few months because of the doctors and hospital scheduling.

Decisions, Decisions...

We get to make a really tough decision tomorrow. Not one I'm looking forward to . We need to decide weather or not to have Jim go through 2 more brain surgeries that would hopefully make his seizures stop. *ugh* how do you make a decision like that, how much input do you let the kid have? His other brain surgeries he was too young to really understand and the decisions were no brainers, (no pun intended) he was 4 and it was either surgery or die. Now Jim is back up to 2 or 3 seizures a day, he was having 6-12 a day this summer so three seems pretty small in comparison. In fact it seems downright minor compared to what he has been through, unfortunately the seizures seem to be increasing again even though we have been increasing his medication. So if he says he'd rather have the seizures than the surgery do I let him have the final word? Is 10 years old too young to make that decision? If he really wants to not have surgery and we think it best do we force him to do it?

Stuart and Ben finally got home at 9:30 they won "Best Game Play" (they didn't award 1st 2end etc this year, they awarded best music, best graphics etc.) Stuart & Ben were happy with that Stuart said that it was just the same as first place, I'm not sure the guy who did the graphics or the girl who wrote the music would agree.

Stuart and Ben finally got home at 9:30 about 36 hours after they left Friday morning and then we had to go back to the Expo Center. Stuart was so tired that he FORGOT his computer and left it there, Luckily it was still there...