I held my breath (okay not really, but it felt like it) as I asked the question, “So did it show any seizures???”

{An EEG is a test designed to measure brain waves. Caleb wore electrodes all over his head for 24 hours to get a better idea of what is going on in his brain. Caleb has a history of seizures.}

She (the neurologist) said, “It was an abnormal EEG. Are his seizures on his right side, because the activity is happening on the left side of his brain, which controls the right side of the body.”

Sigh. Suspicions confirmed. Drat. Keppra treatment lives on.

I’ve never noticed if seizures were happening more on one side than the other. We had this EEG because he continues to jerk around in his sleep, and we weren’t sure if what we’re seeing is seizure-related or not.

She started to explain it, but the she said it would be easier to explain if she could show it to us, so she took us back to the testing room and pulled up several different photos of brain waves. She pointed to each place where the left, posterior portion of his brain is having spikes.

Dr. La Garda also asked if Caleb is still seizure free, so I was confused.

“We saw him jerking during this EEG, so were those seizures?” I asked her.

“No. Those weren’t seizures, just abnormal activity,” she answered.

“Are they related to seizures? How many people have this? Would this happen in a normal brain?” I asked. I can’t believe I was actually able to think of the right questions to ask. It seems like doctors never explain enough, and yet, I never seem to think of the right questions.

She said that about 6% of the population would show this sort of activity. She said she almost called it a normal EEG result, “but then he did this,” and she showed me another page and pointed to more spikes. She explained it, but I didn’t understand or memorize it well enough to regurgitate that information.

She also said that some jerking in your sleep is perfectly normal. That’s good to know!

http://www.biomedresearches.com/root/pages/researches/epilepsy/eeg.html

I asked her about the portion of his brain where this is happening. She said it’s the visual area. On the map above, she showed me that his activity was between T3 and P3. She asked if Caleb is doing okay in school.

“Yes, except he has had a struggle with reading, from the very beginning.”
“Oh, yes,” the doc said, “That comes from this area. Dyslexia is also associated with this area not functioning properly. It looks like the brain could be healing here. The brain heals in sleep. Perhaps he is getting better. He has been seizure free for two years. I think he has a 50-70% chance of growing out of it. We’ll need to re-test and re-visit all of this when he hits puberty.”

“Oh. Puberty. What happens then?”

“Well, the seizures will either disappear altogether, there will be no change, or it will get worse.”

Great. Basically, no one knows.

Caleb enjoyed kayaking with Alan today. He looked forward to that all week. They saw a jellyfish and lots of seals and sea otters.

She filled out his sports physical, and we left. She said he’s fine for soccer, basketball, and baseball. She said he can even ride rides at amusement parks. (I asked because I’ve always wondered. Caleb loves the rides.) She said no to scuba diving (pressure) and fighting sports like wrestling and boxing. He doesn’t need to deal with head injuries.

He will continue to have follow-ups every 6 months, and his Keppra dose will stay the same.

I’m thankful there were no full-on seizures, and I’m thankful we don’t have to increase the Keppra. I don’t like that he has to continue to take a brain medication, but it is what it is.

Now I’m just hoping to read more on the visual portion of the brain, and I’m going to focus on patience with Caleb when doing reading and writing activities. The difference between he and Joshua is a massive gulf, but when it comes to math, Caleb is soaring high. This explains a lot.

Caleb, Xavier, and Joshua, all reading together

Caleb is just a smidgen behind in reading. He seems to be gradually catching up. He passed his reading exams this year, so on paper it looks like he’s fine, but if you listen to him read, you see that he reads slowly and monotone. If he’s reading to someone who makes him nervous, it gets much worse. If Caleb reads to you, please be very quiet and patient. Pleasing others is important to him. He thrives under encouragement.

I also hope to pray more for Caleb.

I talk about prayer, and I pray off and on all day long, but there are so many things that I just plum FORGET to pray about. Because Caleb always seems fine, and we haven’t seen a seizure in two years, I forget to pray about it very often. This is why it’s important to keep a prayer list out and updated. It’s so rewarding, too, as you see those prayers get answered.

Thanks for taking the time to read and learn about Caleb and his epilepsy. For more of Caleb’s story, you can read my past articles on epilepsy here: Caleb and Epilepsy, Keppra Caleb and Epilepsy, Changing My Expectations.

The post EEG Results: I finally have answers to my questions about Caleb’s epilepsy. appeared first on Stories of Our Boys.

First, I want to reiterate that epilepsy is simply that, it does not make a person any less intelligent than any other person. It simply means that a person has had two or more seizures of unknown cause. I feel the need to make that very clear, since so many people have had no experience with epilepsy. I didn’t know anything about it either until the summer of 2011.

For a little background information, you can read this post: Keppra Caleb.

We think that Caleb has been seizure free from April 2013 until the present. Once he makes it to the two-year mark, he could have the “epilepsy” label removed, and we could begin to wean him off of Keppra (his seizure medication).

I so badly want that to happen!

Unfortunately, we have recently seen an uptick in odd activity. We aren’t 100% sure that any of it was actually seizures, but hopefully we will get some answers soon.

1. Caleb has had terrible sinus troubles since October. If Caleb get a cold, that’s it. It’s with him for months, and it usually comes early on in the winter and stays until May or so. Poor, poor Caleb.

Caleb, 18 months, 3 years before the seizures began

Some years antibiotics cleared him up in a snap. Other years, nothing worked. I had him allergy tested, and the only thing he tested positive for was dust mites. Is there anyone who is not allergic to dust mites?

2. Caleb has fallen out of bed in the middle of the night at least twice in the past couple of weeks. Why? We are not sure. He could have just rolled out, or this could have been more seizures. See, Caleb’s seizures happen in his sleep, so it’s really hard to track them.

3. On the flight home, Caleb slept in his seat next to Alan. Caleb kept jerking in his sleep. They were all quick, muscle spasms, in all different limbs, as in one arm would twitch for a few seconds. Then a few seconds later, his other arm would. We’ve seen a LOT of this from Caleb since 2011. We don’t know if they are partial seizures or just muscle spasms. His neurologist says that the only way to know is to have him actually do what he does during an EEG. (EEGs measure brain activity. Caleb had one in 2012, but it was only a 20-30 minute one, and it was all normal activity.)

4. He had two nose bleeds yesterday.

5. I firmly believe that Caleb has more seizures when he is having sinus problems.

6. We have made Caleb stop sleeping in those fleece footies he loves so much. The boy gets too hot in his sleep, and fevers are such an obvious trigger. He now sleeps in much cooler clothing.

So what to do……Obviously, something should be done.

1. We called Caleb’s neurologist. She wants him to do a 24 hour EEG. That would show us how many seizures he has in a day. They wanted to do this on Monday, but our insurance has issues, so they have to work that out first.

2. We have put him back on daily Allegra.

3. I am also going to put him back on Flonase. These are both things he has taken in the past, so we still have them. We had just stopped using them when Caleb was doing so much better. I feel so bad for the amount of medicine this poor boy has to take all the time. However, when it works, medicine is better than being miserable.

Caleb keeps us laughing. This boy lives to have fun.

Caleb is just as hilarious as ever. You’d never know he has these problems, except for the constant sound of snot slurping.  We got to go hiking at Pinnacles National Park today, all six of us. We all had a great time. Once we’d hiked probably 2 miles UP, Caleb kissed me on the arm and said, “This is the greatest field trip I’ve ever had!!!” Nothing makes Joshua and Caleb happier than hiking and rock climbing…not simulated rock climbing, but real, dangerous, scaling mountains kind of climbing.

It has been such a pleasure to teach Caleb this year. The improvements in every single subject are amazing, and I’ve actually gotten to watch it happen. Caleb has this eager joy for life that makes him a blast to be around.  When we were preparing for our Christmas trip, I went around the house and asked each individual child, in secret, “Who would you like to sit by on the plane?” Everyone replied, “Caleb.”

By the way, they are all liking school much better now that we’ve moved school from the school room to the dining room table. I’m in the process of rearranging all my bookshelves this week.  More on that in my next post!

The post Caleb’s Epilepsy Battle appeared first on Stories of Our Boys.

I mentioned in my last home schooling post that my first grader is struggling a little with reading. I also mentioned that he started off really well, but now he’s crumbling. In fact, he pretends like he’s going to sleep when he is reading to me from his “reading book”.

What changed?

Well, the first week of school, you have the excitement factor going for you, so there’s that. However, I think it’s more than that here. Caleb doesn’t enjoy reading yet because he doesn’t think he’s good at it. Therefore, reading four pages about making hot dogs was just killing him. It really was. (Believe me, I was hanging on for dear life too.) Therefore, we have retired both  A Handbook for Reading  and The Story Tree, both 2nd grade readers from the A Beka curriculum. Those are just the introductory readers. There is a whole year’s worth of reading books.

These books actually were not too hard for Caleb. They were too boring for me to survive listening to Caleb.

Meanwhile, at least I know he is reading out loud at school every single day. Surely great progress is being made!

I took him to the library and MADE him pick out books, rather than sit and play blocks, like he usually does. We usually come home with a few Mo Willems books for Caleb and then random, sweet books that I have picked. That’s not cutting it. He has read every Mo Willems book there is, I think, so we needed some more material.

We came home with Frog and Toad (Yes!) and a whole lot of Star Wars and Angry Birds. We also happened upon another favorite author of his:  Doreen Cronin, and Caleb read every one of her books that the library had as well.

It isn’t that Caleb can’t read. He can read.

It isn’t that Caleb hates reading. He likes reading what he considers to be good books.

It’s just that he loathes reading anything “boring” or “too hard.” Tonight I plan to peruse the second grade reader that comes after Story Tree, to see if it is any more interesting. Joshua’s third grade readers are full of excellent literature, historical stories, and admirable poems. If only Caleb’s book could be so interesting!!!

What brought about all these new thoughts on Caleb?  Well, we were at the library, and I heard a 1st grader struggling through trying to read a page of one of Caleb’s favorite books: I Will Surprise My Friend. That’s when I realized, “Maybe I’m selling Caleb short. He does sound way better than an entering 1st grader.”

He’s kind of a lazy reader, if that makes any sense. He doesn’t ever want to be bothered with sounding things out. That’s kind of hard to work with.

Today I replaced his usual reading with a book about the Disney Planes movie, and it was much smoother sailing. He didn’t pretend to fall asleep, throw up his hands and quit, or whine once.

Meanwhile, there were other issues in our little school house today, and my nerves are so frazzled right now, I’m using this blog as therapy and to keep from doing housework. The house work seems to be building up an Army to defeat me entirely.

**********

But not so fast!!!  I may win yet!!!  Alan built the trampoline, as soon as it arrived,  last night!!  Things are looking up, ya’ll!!!

The post New 1st/2nd Grade Reading Plan appeared first on Stories of Our Boys.

🙂 I’m so thankful for this life. This is an abundant life. If you ever have to make the decision: 2 kids or 3…3 kids or 4…. I have to tell you GO FOR IT. This has been the hardest, most rewarding, most fun year of my life.  Okay. Yes. I sort of remember. The first 9 months were actually so overwhelming I was borderline depressed the whole time. The arrival of spring was such a turning point for me!  I am loving this ‘big family’ thing so much more, now that I’m not stuck indoors!

While we are somewhere in the middle of this move, somewhere between the old house in the east and the new house in the west, Caleb will turn SEVEN. We’ve already celebrated with Caleb, but I still feel the need to pause and take a minute to talk about the sweet and imaginative little fellow that is our darling Caleb.

Of all my children, Caleb had the shakiest entry into this world. At 9lb 9 oz, the doctor decided to go ahead and induce labor 10 days before my due date. We were worried I wouldn’t be able to push him out, and I almost didn’t. For more on that story click here: Caleb’s birth story.

Caleb is more than just a sweet heart. He has this can-do attitude that I have always just adored. Through each deployment, I always knew that if I found a bug, I could count on Caleb. If I needed the kids to open their own snacks, Caleb could open everyone’s for me. Caleb could drive a power wheel better than some people can drive a car. He just does things.

Now, if he thinks he can’t do a thing, he throws up his hands in despair and doesn’t even make an attempt. In recent years, I have found it important to only let Caleb see a part of the picture at a time. As long as he isn’t over-tired, you can depend on Caleb.

One of my favorite Caleb memories was when Joshua was 4, and Caleb was 3. We were headed home from Pre-school, and I had stopped at a fast food restaurant. Joshua was just throwing a fit because he could not get this toy to pop open. It looked like it should be a two-piece toy. Caleb calmly said, “Here, Joshua, let me see,” and Joshua handed it over. Caleb carefully examined it for a few minutes and tried several things. Finding it to truly be a one-piece toy, Caleb handed it back to Joshua and said very sweetly, “I’m sorry, sweetheart. It just does not open.”

Do you remember when Caleb used to refer to Joshua as ‘sweetheart’? Oh, I loved it. He’d say in his prayers, “Thank you for Mommy, Daddy, and thank you for sweetheart.” BAAAAAHAHAHAAH  Oh, they were the most PRECIOUS little boys!

Well, fast forward a few years. The new thing for Caleb is, of course, Skylanders. I’m not just referring to the game of Skylanders, I’m talking about the little statues.

I am a little embarrassed to admit that between the two of them, Caleb and Joshua have at least 25 Skylanders. Caleb just got 5 or 6 new ones for his birthday, and he is ALL about it. He has this small rubbermaid bin that he keeps all of them in, and at least two Skylanders go everywhere he goes.

I had to draw the line at taking them to school the other day. (You are welcome, Caleb’s teacher.) Unfortunately, I never have been able to catch all the little Lego men, to keep those from going to school with him. The boys in his class totally have a Black Market trading ring going with the little Lego men and Soar cards (which the kids collect for good behavior). Word on the street is that some of these little boys trade each other cards for Lego men.

Now you know Joshua has been into Skylanders for a while now. They just handle it differently. When Joshua has a new obsession, he spends lots of time researching everything he can find on the topic. He has read everything he can get his hands on about his interest. Then he draws it about a billion times. He can tell you the exact date of when this year’s new Skylander game will be released. Actually, so can I. October 5th. I see it written on little scraps of paper all over the house. Thank you, Joshua.

Caleb doesn’t do the research. He has Joshua for that. Instead, Caleb has to play it out. Always has. When it was Toy Story, we had every single toy the stores have made from that movie, and Woody went on vacation with us for 5 years. When it was superheroes, Caleb lived in costume. When it was trains, he had the best train birthday cake ever, two years in a row. To this day, he can build a train track faster than I can.

Joshua used to have way more Skylanders than Caleb, but things are evening out since Caleb’s birthday. Caleb used to have to ask Joshua to play with any of his Skylanders. Nowadays, Caleb carries them all around in a bin, and if Joshua has a friend over, and they are trying to actually play the Skylander video game, they have to beg Caleb for the little statues, which you have to have to play the game.

I heard this from the basement the other day:

Xavier: Caleb, come on! We can’t beat this world without a water element.

Caleb: You can’t have any of the Swap Force. They are going into battle.

(Caleb and Lincoln had every little Skylander arranged into armies, which were too busy with battle to be bothered with the “Portal of Power” –the portal transports the Skylanders into the video game.) Is this confusing? I’m sorry.

Xavier: Please, Caleb!

Caleb: Okay, I guess you can have this one.

A few minutes later, the second grade boys all ran upstairs.

“What are ya’ll doing?” I asked.

“We have to go outside. We can’t play our game because Caleb won’t let us have any of the Skylanders,” Joshua told me, as he followed his friends outside to the trampoline.

When Caleb goes to bed at night, he lines every single one of those little creatures up: across his headboard, across his desk, and if he migrates to my bed in the middle of the night, I will wake up in the morning snuggling one of the things.

Happy Birthday, Caleb! We love you so much!!

Joshua (2) and Caleb (4 months)

10 months

18 months

age 2, chasing pigeons at the Smithsonian

age 3, becoming a big brother

4 years old

5 year old Caleb, welcoming another little brother

6 year old Caleb

and now…..

I just love my Caleb: middle child, Skylander lovin’, imaginative, Elephant & Piggy fan, devoted brother, loyal friend, friendly to everyone, mechanically gifted, self-reliant, home-body, and hilarious little boy!

Caleb is always wanting to change his name to one thing or another.  This week he said, “I want to officially change my name to Chaos.” Chaos is the villain of Skylanders.

***Oh, and one more thing***

John David is so sick right now that his eyes are just little, puffy slits. He is sleeping most of the day as well as most of the night. He gets up just often enough that Alan and I never quite feel rested, even though we are taking turns. For three nights now, we have both spent hours in the recliner with our baby, holding him up while he sleeps. It is the most pitiful thing. I think this is the sickest baby I’ve ever had. His fever peaked the other night at 103. He’s been on antibiotics for two days now, but it hasn’t made much difference. Do you think he could have the flu?

Guess who else is sick? Me. If we do have the same thing, then it isn’t the flu. While I’m pretty miserable at night, I am still functioning. I’ve had the flu before, and it is 1000 times worse, but John David is much, much worse off than I am. If only 11 month olds could take Sudafed! It’s a powerful medicine.

I guess it’s a good thing we didn’t plan to send JD to Alabama because he would not have been able to go anyway.

Meanwhile, how excited am I about the boys’ impending vacation!!?? The three oldest are taking off tomorrow. Many thanks to both of our families for all this babysitting. How would we ever do this without you?

Really, how? I haven’t been able to get too much done this week, but I have BIG plans for this weekend. I’m sure my miserably sick little sidekick won’t slow me down at all……right…..

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