Jedi knights

I won't confuse things by changing their names permanently on this blog, but we now have some Jedi knights in the family. Mike is Anakin and Harry is Obi-Wan Kenobi (but sometimes Yoda). Stephanie just likes to play and doesn't really care who she is. Mike used a birthday gift card to buy a light saber. When you have a light saber, you want to fight someone, of course, so he was nice enough to buy one for Harry, as well.

Anyway, we have a little tent-looking house given to the kids by the grandparents. It's pretty cool. It folds up like those windshield sunscreens that were popular for a while, where you have to flick and twist your wrist just right to get it to fold up into a circle. Anyway, The Dad alwasy has to do it because The Mom doesn't seem to have the correct wrist motion in her repertoire.

This has become the "Jedi Tent." Mike and Harry decided that they wanted to spend the night in the Jedi Tent on Saturday night. Well, we weren't sure that they would sleep and that's the night before church, so we told them they could on Sunday night. The Dad was supposed to be gone camping on Sunday night (but he got rained out), so we figured that would be a fun diversion for them.

Stephanie wanted to sleep in there with them. It was a pretty tight squeeze, but they slept in there all night. Mike even slept until after The Dad left for work (yes, he has to work on Memorial Day), which is highly unusual for him.

T-ball again (and more?)

Apparently, The Mom has told quite a few people about this slice of the web, so if you're new- Welcome!

Harry had another incident at a t-ball game on Friday. He was playing pitcher again. This time, someone was throwing the ball back to him, as the play always ends by getting the ball to the pitcher. He made no effort to catch it, or to chase it down after he missed the throw.

I immediately went out there and he had "the look." If you have ever seen him in one of these situations, you know what I'm talking about, but it's hard to describe. He just doesn't look right. We sat him down and got him a drink, but by the time it was his turn to bat, he was ready to go. He seems to bounce back quickly, for the most part.

We told a friend at dinner about this incident and she asked if we were sure it was a seizure, as Harry is only 5 (but almost 6!). Well, first, we don't know if it's a seizure or not. We're assuming that without medication, it would become a seizure, but instead it's a seizure precursor or something. Second-- Yes, there are some kids out there who could get hit by a ball on the field and they would be surprised that there are actually people on a baseball field using a bat and a ball and rudely interrupting their nap/flower picking/dirt play.

However, Harry is not this type of player. He is always on the move, because he wants to be part of the action. So, yes, when he doesn't move, we know something is going on.

More importantly, this really got us thinking and talking. This has happened twice in t-ball lately. So, how often does this happen that we don't know about it? When's he playing by himself at home, or reading, or watching tv, and he just zones out for a few seconds, we might not notice because he's not in a situation that brings it to our attention. Just wondering...

(wow, this post got long. Sorry!)

MRI

We finally heard back on Harry's MRI from last Friday. I'm a bit hesitant to mention it, since we don't really know the impact at this point. The good news is that there are no tumors or lesions. However, according to Dr. V, Harry has a Chiari Malformation. The best picture I have seen of this is here. Here's an MRI of it, though as far as we know, he doesn't have a syrinx. Harry has not shown any of the symptoms and seizures have not been linked to this. I think it's just something else for us to worry about!

On another note, I am getting quite frustrated trying to get an appointment with the pediatric neurologist. I have called 3 days in a row now, the last two leaving a voicemail. The message told me that all calls will be returned by the end of the day. They have not. By all accounts, he is a good doctor. I just wish his staff was more responsive...

Again...

Harry told us that he had another seizure today at school. Apparently, it was during PE and he didn't tell anyone about it. I guess it's good that he recognizes that something is going on and he can tell us about it. It sounds like it lasted just a few seconds, like the one yesterday.

I feel like all I'm writing about on here now is Harry's health. I'll try to add something more interesting, but people ask about Harry, and this is both a good way to keep people informed and for us to journal when they happen.

Another one??

Yesterday at Harry's t-ball game, he gave The Dad a scare. He plays pitcher, and I have to admit, he's good. He made all 3 outs in one inning, including a nice catch on a line drive. Enough to make a dad proud.

Anyway, that's not what scared me. At one point, he was on the mound. I was looking at the batter, not at Harry. The batter hit the ball and it went about 3 or 4 feet to the left of Harry. He didn't move. Normally, he would have pounced on that ball like a cat on a mouse and made a terrific stop followed by an easy throw to first for an out. However, not only did he not move, he didn't even look at the ball as it went by. This immediately worried me since this is typical of how his seizures have started. He snapped out of it and was alert by the end of the play. I went out to check on him and he told me he didn't see the ball, but he was acting fine and wanted to stay in the game.

At home after the game, I asked him about again. Through further questions and some back and forth, we determined that he had lost his peripheral vision. I asked if this had happened before and he said no. We decided that this was possibly the beginning of a seizure. Whether or not it was a very short one, or if the medicine he is taking kept it from continuing and worsening, we don't know. But it did seem to be an incident worth noting and the type of incident we need to continue to look for.

Re-posts

I've decided to use this blog as a way to keep people updated on Harry's condition, as several people have asked lately. I have a few entries of late regarding this, including this summary post.

I have also added the first two emails I sent out when this starting happening. I've included them "as is," and time stamped the same as when I sent the email. Here they are:

Harry #1

Harry #2

That should get everyone up-to-date. I'll try to keep this site updated with info as it becomes available.

Mike's birthday

Today is Mike's 8th birthday!

We will be celebrating by taking 20,160 kids bowling. Actually, I think it's just 7, but it will probably seem like 7!. (Yes, I'm a math geek.) The noise and activity with kids that age seems to expand factorially.

No news

No more seizures.

We've heard nothing on the MRI, which is not surprising. We probably won't until we call Dr. V's office to find out what's going on.

Harry seems to be doing OK with the additional meds. If he's eating something that we can put the stuff in, we will. Last night, he had depakote sprinkles on this tostada (for our northern friends). Otherwise, we put it in some applesauce. He likes to "eat" the capsule shell, after the sprinkles have been sprinkled. He thinks it's cool how it dissolves on his tongue.

Pray that he'll have no more seizures and we make good decisions on doctors and treatments!

More Seizures

Harry had another seizure yesterday (May 18). He had another EEG this morning and now he gets to take TWO medications (tegretol and depakote), three times a day. The new one is a capsule, so he'll either have to learn to swallow a big pill or we'll have to open the capsule and put the powder in applesauce or yogurt or something. That should be interesting.

We are somewhat frustrated with his neurologist. You read about the confusion with regard to his medication in a previous post. Then, I got a voicemail on May 13 from Dr. V's office. Essentially, the nurse said that she had also left a message at home, but that the the blood levels were back and everything was fine and keep him on the same medication. Ummm.... He had his blood drawn on May 2 and we had sinced upped his med's without another blood draw. I called The Mom and she had gotten the message at home and had called the office rather irate. Long story short, we have an appointment with a pediatric neurologist in a larger city and an MRI scheduled for tomorrow.

A Horse With No Name

Looking up the lyrics for the last post reminded about The Mom's favorite song ever...

Here are the lyrics and here's a snippet from the iTunes Music Store (must have iTunes installed).

"Lime in the Coconut"

Mike started (and then got Harry and Stephanie started) singing a song that he picked up from a commercial- "You put the lime in the coconut and then you drink it all up."

They thought it was funny and made quite a trio, as they danced and shook their little booties to the tune. The song didn't quite make sense to The Mom and The Dad, though. The Dad used his internet savvy to find the real commercial. As with everything, it seems, it was found on the internet. They were close, but they're version was cuter... The Commercial

By the way, Coke with lime is pretty good.

Update: It was pointed out in a comment that there is a real song called "Put the Lime in the Coconut." Here are the lyrics with a slightly modified Muppets version of the song.

Harry

Humble yourselves, therefore, under God's mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you. 1 Peter 5:6-7

Harry has had a few seizures lately. If you are a parent, you've discovered that you can put up with a lot of sickness in your own life, but when your kids get sick, it becomes an entirely different issue. You love them and you don't want them to suffer and you just want to "fix" them and make it all better. The Dad has had seizures (though his have been tonic-clonic, while Harry's seem to be "gentler" complex partial seizures with secondary generalization [more info]), but The Dad takes his meds and doesn't think it about too much. With Harry, though, we want to get to the bottom of it and figure this thing out. Unfortunately, with this type of thing, there's usually not much that can be figured out- you just learn to live with it. The EEG shows us that there is a lot of "seizure-like" activity going on, but there is no discernible cause. Maybe it's just because he's so smart and there's so much learning going on in there!

He started taking medicine to prevent the seizures. When he had a seziure after being on the meds for two weeks, we were quite discouraged. Then, when the doctor's nurse told us to TRIPLE the dose from 100 mg twice a day to 200 mg thrice a day, we were concerned. After The Mom went and sat in the doctor's office and staged a sit-in (I'm not sure if she threatened a hunger strike or not) until he would talk to her, we found out there was some sort of miscommunication and it turns out that it was only supposed to 100 mg thrice a day (a 50% increase, rather than a 200% increase). Big miscommunication. That's an increase in medication we can handle. At this point, we'll increase the medicine and hope that suppresses any future seizures.

Though we want to fix things, we've got to learn to rely on God to help us through this. The passage above was pointed out to us by several people when this first started happening. All I can say is that we are trying!