Jimmy's Seizure update...

Jimmy's seizures keep getting worse He started having seizures about a year and a half ago, They started on the right side of his face and lasted maybe 10 seconds he had about one a day. Then last spring they suddenly started getting dramatically worse, now the seizures involve his entire body and last a minute or two and can take 2 to 20 minutes to recover from. He has fallen down stairs, dis-located his elbow, sprained his wrist, broken his glasses and acquired many bumps, bruises and scrapes from his seizures. He is currently on 3 seizure medications, none of which work, we have tried many others and, only one seemed to work: he was down to only two seizures a day while he was on it however, It also made him very sick, he lost almost 15 pounds and threw up everyday in the 3 weeks he took it before I had them take him off it.

We are now testing Jimmy to see if they could do surgery to remove the part of his brain his seizures are coming from. He stayed in the hospital for an "Extended Visual EEG" in December. After 3 days and 14 seizures they sent us home 2 days early because they had enough seizures recorded. The only thing that they could tell us from that testing was that the seizures were originating from the left side of his head, *ugh* . Thanks, but we already knew that! A couple of weeks ago we did a MEG (Magnetoencephalography). we had to keep Jim up all night the evening before the test. He was really excited to pull his first "all-nighter" about 1am he decided staying up all night wasn't that fun after all and by the time we got there for the testing he was very angry with me for keeping him awake. They took about an hour getting him ready for the test and he kept falling asleep sitting up while they were gluing electrodes to his head. He did sleep just fine during the test, I still feel a little sleep deprived though. The results from his MEG showed "lots and lots and lots and lots" (the doctors words) of excess electrical activity and that there are two separate places in his brain that are causing the seizures, so there are 2 parts that they would have to remove to stop the seizures, but surgery looks "somewhat promising" our next step is to get a bunch of neurologists, neurosurgeons, and other fancy titled doctors together to look over all his information to see what they they think our next step should be. It could take months to get all those doctors together for a meeting. so for now we Just wait and wait and wait....

Letting your kid be a kid

I let Jimmy ride his scooter today, I made sure he wore his helmet and then I stood there and watched him zoom up and down the street with fear squeezing my heart, I was so worried he would have a seizure and end up face down sliding across the rough asphalt. But he had so much fun. Jimmy got his scooter a year ago for his birthday, I figured it was safer than a bike for a kid who was legally blind. He loved his scooter, he rode it every single day and then the seizures got worse, they went from being just on half his face for a few seconds each day to his whole body being involved 5 to 7 times a day. So I quietly put the scooter away. He asked me yesterday if he had enough money saved to buy a scooter and so I told him we still had his.

Yes, it would break my heart to see him hurt himself again when he has a seizure, but, it also hurts to tell him he can't be a kid and do all the stuff a kid wants to do. Where does a mom draw the line between trying to keep her kid safe and letting him live as much a life as possible. Yes, I have nightmares about him having a seizure and seriously hurting himself or worse. But, I also don't want him growing up without a childhood or with anxiety, constantly worrying about hurting himself. So I continue to walk the line and worry about if I'm doing the right thing.

The Death of a Minivan

I proudly drive a 1998 dinged up minivan... well, maybe not that proudly. It has been a very reliable vehicle so I have been trying to make it last for another 2 or 3 years when I figure we won't need a minivan anymore. It wouldn't start Sunday, I thought that perhaps the light was left on. We jumped it Sunday and let it run for a few minutes. It started just fine after that. I was taking it in for an oil change anyway on Monday morning so when I brought it in I asked them to rotate the tires, check the battery and do the oil change. 45 minutes later I was told that it needs new tires, and the lug nuts were so rusty they did not think they could remove the tires to rotate them with out replacing some lug nuts at $20 to $30 each. Since it needs new tires anyway perhaps I should wait and just replace the tires instead of rotate them. Oh and by the way, it also needs about $450 dollars in repairs. So lets see... $400 new tires+ $450 repairs + $200 the windshield it also needs... I told my husband that if it ever needed more than $1000 in repairs we should get a new car. I don't want a new car! I hate car shopping and We REALLY don't need to spend the money right now! So I left very depressed.

I ran some more errands after that. When I got back to my van it wouldn't start. It would not even crank a little. So I was going to have to jump it. However, the van was parked very close to the car in front of it. I couldn't walk to the front and reach the hood release latch. So I'd have to push it out of the parking stall, up hill, to get access to the battery to jump it. The person who parked on my left side had parked so close that there was no way I would be able to push the van with the door open to steer it and push it at the same time. Ugg! I sat there and said a little prayer and when I was done the lady parked in front of me got in her car and drove off. I quickly put my van in neutral and rolled forward. I finally was able to get it jumped and drove straight back to the auto shop where I very politely asked them if they checked the battery they didn't know so they checked it again "It has a charge now but that doesn't mean it will hold a charge for long. The battery is 4 years old, probably time for a new one for $100. Oh, and by the way your tire looks low let me fill it. "

I returned home stressed out and depressed and tried to get some house work done. When my husband came home an hour later he discovered the van had a totally flat tire. Me and my husband spent over an hour on our hands and knees trying to change the tire. Remember the rusty lug nuts?

We got the tire patched and a new battery, but, it looks like we will probably need a new vehicle. I messed up my bad knee and did something to my shoulder trying to help get the tire changed. I guess I am getting to be as old as the minivan. Should we replace me when I get too expensive to repair?

update on Jimmy

Jimmy has seizures, lots of them, all the time. It's one of the many fun side effects of having a brain tumor and brain radiation treatments. (radiation, the gift that keeps on giving) He has been having between 4-8 seizures a day. We have been trying every medication in the book to try to stop the seizures he is currently on 3 different medications for his seizures. He is also going through precocious puberty and the doctors think the increase in hormones may be contributing to the seizures, so now Jimmy will be taking Lupron injections to stop the puberty.

A few weeks ago Jimmy started a new medication to try to stop his seizures. the day after he started the medication he also began complaining of a tummy ache, so he has been throwing up every other day for a couple of weeks, he even felt too sick to go trick-or-treating. At first I thought he had a stomach bug but three weeks later he is still sick. So now I am thinking it is his new medication. However his seizures have also decreased to only 2 a day; So would he rather feel sick all the time or have seizures? Ugg.

Jimmy is scheduled to stay in the hospital for 4 days do a VEEG to see if they might be able to do surgery and remove the part of his brain that is causing the seizures. So do I hope they can do surgery and remove part of his brain or do I hope thay say that they can't?

It's all good

my 19 year old goes around saying "It's all good" I think he means it as I'm alright or no thank you. But it got me thinking.

One night My husband asked Jimmy "if they could do an operation to make your eyes work would you do it" I cringed: there is nothing we can do to make Jimmy's eyes better I don't want to get his hopes up. But, Jim's answer surprised me, he said "no, then I would not be who I am."

I remember sitting in the hospital alone while I was waiting for Jimmy to wake up from sedation after one of his daily radiation treatments, I had LOTS of time to think. I was thinking about my little brother who is deaf and what an incredible young man I thought he was. I thought his struggles with his deafness probably had a large part in moulding his character and making him such an amazing individual. I hoped that Jimmy would turn out to be of such strong character; maybe Jimmy's "visual impairment" would help build his character in a similar manner. If I had a choice to have my son with perfect vision but unhappy and of poor character or have him be visually impaired but, happy and of strong character what would I choose?

Well it's not my choice. But, it seems to me that in the end if we go through life with the right attitude the trials help to make us better in ways that we otherwise wouldn't have been. Life builds us in unexpected ways. In the end I guess "it's all good" after all.

Siezures

Jimmy had a seizure last week, well actually he had a lot of seizures last week, he has anywhere from 5 to 8 seizures a day, but that is "normal" for him. But, last week when he had a seizure he was sitting at his computer desk, his arm went forward and got caught in the keyboard drawer and then he fell off the chair. He dis-located his elbow. Recently he has also had a seizure at the top of the stairs, and fallen all the way down the stairs, he had had seizures where he had fallen so hard that he bloodied his knees, had seizures where he went face down in his bowl of breakfast cereal, I worry he could have drown in his breakfast. The poor kid can't even shower or take a bath alone. It is so frustrating! nothing we have done seems to help we keep trying all these different medications and he just keeps getting worse. If Jimmy is sitting down he usually won't fall over, so I find myself not encouraging him to do any physical activities, What Kind of life is this for a 9 year old boy? He used to be aware of what was going on when he had a seizure but, now he is only "aware" about half the time. Sometimes when he has a seizure I just sit on the floor holding him and crying.

Pity Party!

I'm having a party and you are all invited!

I'm having a pity party: I'm going do nothing but sit around and feel sorry for myself. You can come and sit around feeling pathetic with me. We can sit in a circle and tell about how rough we all have it. We can listen to each others woes and complaints. I can picture it now in my mind, first someone will tell of their chronic pain and their spouse out of work, then another will tell of the impending death of a spouse fighting cancer, another mom will express the agony of their child's death and then when it comes my time to complain I'll feel rather small and ungrateful complaining about the health problems of a my son, whom I still have with me, or the job my husband still has, or my relatively healthy body. So I'll just smile meekly and offer everyone a cookie.
See, I feel better already.

One more day

Today is the only June 15, 2010 you'll ever have. Today you have been given one more day on the Earth. Don't waste a second of this precious gift. You'll never have today again. Live today with a smile on your face, do your best at everything you do, help others along your way, and go to bed tonight with no regrets.

woot shirt - will work for money

*Whew *

I just entered a shirt in the woot shirt derby. Something I have never done before. The theme is "Shirt you'd wear to a job interview", a t-shirt you wear to convince someone to hire you. We'll see how it goes. The shirts are up for vote for a few days and the three shirts with the highest votes get printed and the designer gets money. If you have a woot account vote for me! Or Just leave a comment on woot telling me what you think.

http://shirt.woot.com/Derby/Entry.aspx?id=42993

hospital visits and pity parties

I was checking Jimmy out of school for a yet another Dr. appointment for what seemed to be the twentieth time in the past three weeks. As I walked through the halls and listened to the "normal" children in their class rooms I began to think about how unfair it all was, I am so tired of dealing with all of this, why can't my kid just have a normal life? I an so very tired of having to deal with all the doctors and appointments! I wish he could see like a normal kid I hate him having seizures and all these other medical problems. I hate to admit it but, I even began to cry. I got myself under control before I got to Jimmy's classroom and picked Jimmy up.

We began the long drive to Primary Children's Hospital when Jimmy asked me "Why do I have to go to all these Doctors? I never get to enjoy life, I never get to have any fun. my life would be better if I had never been born." While I do allow myself an occasional pity party I don't want him to have one. Jimmy is usually so cheerful and upbeat it kind of broke my heart to see him so down. So I began talking to him about how lucky we were to live somewhere where we had a good hospital to go to. We talked about all the wonderful things he had in his life, and how lucky he was to have all these doctors who cared for him. We talked about how many people loved him and about the fun things we got to do at the hospital. While I was cheering him up I found I had I cheered myself up as well. Sometimes when you help someone else look at the bright side you are really helping yourself.

For those of you who love to bake, there is a giveaway at friedalovesbread.blogspot.com

Colored Easter Eggs

Easter is quickly approaching and I asked the kids if I should buy eggs to color for Easter. This is the first Easter that we have had chickens. Our chickens lay brown eggs, tan eggs, speckled eggs and even blue-green eggs but no white eggs. My kids love to color Easter eggs so I asked if should buy some white eggs to dye. Their responses were:
"no way"
"Ewwww gross"
"only if we don't have to eat 'em"
and my favorite:
"what are we gonna use 'em for, target practice?"
I guess my kids are spoiled by their nice, fresh eggs.

Dr. Appointments and more Dr. Appointments

I was dropping Jimmy off at school yesterday and he asked what time I was checking him out. You see, he has had a lot of Dr. appointments in the past two weeks. He has had blood draws and an MRI, and Brain Tumor Clinic, and an MRA, and we have talked to his pediatrician, and his oncologists and his neuropsychologist and his neurologist and we had a really, really, really long day at his opthamologist.
So he wanted to know when his Dr. appointment was going to be that day. I told him we didn't have Dr. appointments for the rest of the week, boy was he disappointed, he had to spend an entire day at school.

We still don't know what's causing his problems so he won't be sad for too long, we have more appointments next week.

Thankful

I am grateful that Jimmy's MRI turned out to be clear. I am thankful that we have such a good health care system that I can get an MRI in a few hours notice. I'm glad that I'm so used to finding out the results of Jimmy's MRIs immediately that I complain when I have to wait for the next morning to find out the result. I am so blessed to have so many people that care about us. I'm glad that I have to now figure out why Jimmy is having these problems instead of trying to figure out how to fight a recurrence of his cancer.

had a bad year this week

We had a rough day yesterday, and now I can't sleep.

We had parent teacher conference on Thursday evening where Jimmy's teachers told me he was having severe memory issues since about Christmas. His resource teacher mentioned placing him in another program in another school because they weren't able to help him here. Something like this would have been nice to know earlier. Then on Friday they sent Jimmy home from school because his right eye was hurting a lot. The pain gradually went away. I took him to his pediatrician who could not find anything wrong and called his ophthalmologist's office "is there any change in vision in that eye?" "No, he is still BLIND" Then on Sunday he had 3 seizures. His seizures had gradually been increasing but he has never had three in one day before. On Monday I called his neurologist, his neuropsychologist, and his oncologist. Monday afternoon he came home from school telling me his whole face hurt kind of like his eye was hurting before. After the Doctors all talked amongst themselves for a couple of days. I got a call yesterday morning telling me they wanted to do an MRI today. Jimmy was already in school so I had to check him out during his St. Patrick's Day activities and tell him "we get to go have an MRI." Yeah, he was pretty upset. I brought a drink for him to drink in the car on the way to the hospital (his IVs go better if he is well hydrated) and he had a seizure and spilled the drink all over himself. We got to the hospital and waited 30 minutes for the IV team to get there and it took 4 tries another 45 minutes of poking around in his veins to get the IV in, not fun. By then we had missed his time slot on the MRI machine we had an appointment for, it was either come back later or use the other machine. So we used the other machine. The radiologist has asked us in the past to always use the same machine for him, so we hope he will be able to read them alright. Of course by the time we got his MRI done the radiologist had gone home so we will have to wait for the morning to find out if his brain tumor is back.

So now I can't sleep.