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...

Cheater Cheater

I received a letter in the mail from Jim's School it was a note from the school nurse. They had a vision screening at school and they are very concerned, Jim's vision test showed he has 20/100 vision in the left eye and 20/100 in the right eye. I wish! Since his brain tumor his vision has never tested better than 20/200 in his left eve and he can't see at all in his right eye. He usually tells them he "doesn't see very well in one eye," they will check his left eye first and assume that is the eye that he does not see very well from. Then they check his right eye and freak out. He must have cheated on his eye test, he frequently cheats on eye tests. I'm not sure how he cheated but he has cheated on eye exams before. He usually peeks with his "good eye" or tries to sneak closer to the eye test. I do find myself hoping that the schools eye test is correct even when I know it can't be. We were told his vision would never improve and we just had Jim thoroughly checked out. Isn't it silly that one incorrect eye test that I know is wrong can still get my hopes up?

I just wonder why I got a letter from the school that knows my kid is legally blind telling me my child has less than perfect vision.

halloween costumes

I always have made my kids Halloween costumes. I started doing it because my kids always seemed to want to dress as something that they didn't sell costumes for, now I do it because it is cheaper than buying. Some costumes I have made are a zebra, roadkill, a harry chested pirate, Captain Hook, a duck, and the tooth fairy. This year Jim wants to be a storm trooper because he bought a toy gun that looks like a storm trooper blaster. I'm not sure I could make a good storm trooper costume so in an effort to talk Jim out of the storm trooper idea I pointed out that: he couldn't take the gun to school, I probably couldn't make a good storm trooper costume, and He couldn't wear a mask, and to really look like a storm trooper he needs a mask. Then I said "why don't you try to think of something else" so he come back a few minutes later and says "I Know what I'll be instead of being a storm trooper,.. I'll be Luke Skywalker disguised as a storm trooper"

We spent a month at the hospital last week

It was Jim's MRI and brain tumor clinic one day and his Epilepsy Clinic the next day. It wasn't really a month we spent at the hospital but, it sure seemed that way. Jim got an IV, blood work and a blown vein. He had his hearing tested in audiology, He had an MRI and X-ray done, we went to Brain Tumor Clinic and Epilepsy Clinic and endocrinology, and saw what seemed like every doctor on the planet, although Jim assured me that that wasn't actually true. at one time I found myself explaining to the Brain tumor clinic coordinator why Jim sees 2 neurologists, 2 neurosurgeons and 2 neuropsychiatrists (one of each specializing in seizure surgery) and 2 ophthalmologists(one is a neuro ophthalmologist) then she said "and only one oncologist?"

The results? all good...
-Stable MRI!
-No endocrine issues, His endocrinologist keeps thinking there is a problem with his pituitary, but his levels always seem to be fine this time, and surprisingly no thyroid problem yet.
-His bone age test showed that if everything goes well he should be "average" height when he grows up. Average is very good all of the rest of us are "below average" height.
-Hearing is good, no radiation damage there either.
-No new concerns in any other areas!!!
-They were going to schedule his surgeries for his seizures but, he is down to 1 or 2 seizures a day, they want us to increase his meds even more (he is at a full dose for a child) to see if we can get full seizure control. We will meet again in December to see how he is doing. No brain surgeries makes a mom happy!

Wooo Hooooo!

wonderful life

Jimmy wrote me a letter a few months ago, I keep it by my desk as a reminder.


Dear Mom,
Thank you for being so caring. It is so nice when you make me breakfast. Thank you for being so nice. You have made my life wonderful.
Love, Jim

It is nice that he is thanking me, and I am glad that he likes the breakfast I cook him, But the best part is the last line "you have made my life wonderful"

humm....lets see the poor kid is legally blind, suffers from 6 to 8 seizures a day and he thinks his life is wonderful !
Perhaps I should stop complaining about all the little stuff that I think makes my life difficult, and start enjoying my wonderful life.

more Jimmy seizure updates.

Well the epilepsy surgery board doctors met they decided that Jimmy did look like a promising candidate for seizure remediation surgery. They sent us off to have more testing done. We did a long day of Neuropsychology testing and they wanted some visual field testing, both doctors had cancellations so we got the tests done right away. Unfortunately, the epilepsy surgery board won't meet again until the first week in June, me and Jimmy will be there to discuss things further with them. They are talking about a two part surgery where they open his skull and lay a "mesh" on his brain to see exactly what parts of his brain do what, they will leave it there for approximately a week and then if everything looks good they will go back in and remove the places that the seizures are coming from.

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.