The Bad and the Good

I was thinking today about how incredibly deeply grateful I am for Jim's successful surgery and lack of seizures for the last three months. It has truly been a miracle. I really can't believe what a change it has been in our lives. It makes me feel like dancing around with a goofy smile plastered allover my face. As I was thinking about this I thought about my other children, was I grateful that they hadn't had seizures in the last three months also? Well of course but, I wouldn't think of doing my happy dance because one of my other sons had not had any seizures. Why? well it's because they had never did have any seizures.

We often don't recognize the blessings we have been given until we go without them for a time. We don't notice how good we have it until we experience the bad. Perhaps that is why we have so many "difficulties" in this life. It is  to help us to be grateful for all the blessings that otherwise we would ignore. And gratitude makes us happy. So now I'm off to dance some more.

Miracles Mowing the Lawn

I looked out the window tonight and saw my husband teaching Jim to mow the lawn. It quite unexpectedly made me cry, I mean really cry, not just the sweet tender tear sliding down my cheek cry, but the gut wrenching, blubbering, sobbing but good kind of cry.  I never thought I would see Jim mowing the lawn. It was too dangerous to let a kid who has multiple seizures daily mow the lawn, or cook on the stove, or be alone, or swim, or walk to school alone, he even needed someone in the room with him when he showered.  But since his surgery he has not had even one seizure. I hadn't realized how much a part of our daily lives his seizures had become, how normal it seemed to me to jump up and catch Jim at any time, to walk behind him always making sure I was ready to break his fall. I still jump whenever I hear a thump or a bump, I still start to catch him when I see his arms move a certain way. It is almost and alien experience to just tell him to go take a shower and not  sit in the bathroom with him. Jim just turned eleven and it seems as if I am watching him mature years in the last few weeks since his surgery. He can be so much more independent and we are teaching him things I hadn't realized we were holding him back from doing. It never crossed my my to have him mow the lawn before, I didn't realize I was holding him back from it, so as I watched him mowing the lawn It made me realize what he had been missing and what he can do now.  It feels like he has been in a cage, he was in  the cage so long and it was built so gradually that I didn't truly realize how restrictive the cage was, we just dealt with it. But now he is free! and I can't tell you how good it feels to watch my son mow the lawn.

April Fools 2012

For April Fool's day all my sons all forgot it was April Fool's day until breakfast: I made hamburgers for breakfast (really sausage patties, eggs and cheese on a hamburger bun.) Jim didn't believe that they weren't really hamburgers and kept trying to put ketchup and pickles on his. Jim did the classic taping the handle of the sink sprayer down and I got soaked, but that was my fault, the first time I turned it on the sprayer was aimed into the sink and I didn't get wet, so I aimed it properly for him only to forget about it, and proceed to drench myself when I went to wash my hands a few minutes later. I hung toilet paper from the top of my 14 year old's bedroom door frame, that scared Jim more than his brother: The toilet paper was the same color as the door and Jim couldn't see it until he tried to open the door to talk to him. I put an April Fools sticker on the bottom of my 18 year old's new TRON mouse. He was a little angry because he had to re-start his computer 3 times before he figured it out. Jim bought a squirt camera and really got his uncle good because his uncle was bending down to get a better look at the camera when Jim squirted him. I salted Jim and my Hubby's toothbrushes, that didn't work really well because they both rinse their toothbrushes before using them. And then for dinner we had grilled cheese sandwiches, (Grilled pound cake slices with orange frosting in between) Peas, (Laffy Taffy rolled into little balls) and chocolate strawberry pie (An actual recipe I used that was meatloaf pie with pink mashed potatoes ) and plain old spinach. Jim asked “Is this really spinach?” I should have told him it was candy.

More Jim Updates

Jim spent literally hours at the eye doctors on Friday, we got there at 9:30 and didn't leave until around 2:00, but it was all good. All the eye tests, even the visual field tests showed no change in Jim's vision, he is still mostly blind. I was so worried, he really can't afford to lose any more of his eyesight. WE went to his Neurosurgeon yesterday and I was told all was well with his extreme swelling of his head, it could take months to repair itself and re-absorb the CSF fluid but, unless it is leaking to the outside world, don't worry. The best part, still no seizures! so Mom is happy now!!

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.