Tuesday, November 24, 2009

Such Love and Support

I can't even begin to say how grateful I am for everyone that has offered love, support and prayers for Daniel. I've had so many people come up and ask how we are and have been telling us that they've been praying for him. It's overwhelming. It's also been interesting to find out how many people out there actually have epilepsy. So many people have told me that either they have, or know someone that has, epilepsy and that they are doing well. So encouraging.

The principal, counselor and school nurse have been so helpful with helping me out as well. They're locked and loaded for after Daniel sees the neurologist. I just wish I could figure his teacher out. I don't exactly know what's going on with her. She's acting weird and strange. Almost like she's trying to protect herself. Huh.

I was at my soccer game last night and we were warming up when my friend, Debbie, asked me about Daniel. She hadn't heard that we got the EEG results. My neighbor, Katie, only heard the word, "epilepsy," and looks at me, panicked. "Who has epilepsy?" She asked me. "Daniel," I told her. "Oh my God, Barb! I am so sorry!" She tells me as she gives me a big hug. I told her that it was okay. Really, it was going to be fine. That's when another girl on our team, Renee, comes over to tell me her mother has epilepsy and she's doing really well on medication. It was very nice to hear.

Children's Mercy has been running these commercials, both on radio and TV, where they talk about the Million Reasons Mosaic The line goes a little like, "there are a million reasons to choose Children's. What's yours?" Then, they show the picture of a child made up of a bunch of photos of other children. It always made me a little misty but now, I flat out cry when I see or hear those commercials. (I'm welling up just typing this.) I don't know if I'm going to be able to listen to the radio-thon my radio station does every spring. The whole idea of needing Children's is overwhelming. I think a lot of it is that I feel guilty for not catching this before now. That he's had to struggle all these years and I let him down. I know it's silly and we've got the diagnosis now, but...

Friday, November 20, 2009

Boo-Ya! I Told You So!

We got our answer today. The pediatrician told us that Daniel's EEG was "abnormal and indicative of epilepsy." I told you it wasn't ADD. So his teacher can freaking bite me.

After school, I talked with the school counselor who wants me to let her know what the neurologist says so that if we need to start any kind of IEP proceedings, we can get that going. Also, so that we can start making modifications for him in the classroom. She's the one who, surprisingly, has been incredibly supportive and told me months ago that this diagnosis makes perfect sense. She wanted to know if I wanted her to tell his teacher to "take one thing off my plate." I told her no that I'd do it.

I ran down to find her in the classroom. When I told her the test was positive for epilepsy, she looked as though I'd hit her and her jaw hit the floor. She told me that she'd never seen Daniel have seizures and I told her that she had. When he goes blank, that's a seizure. I don't know if she's yet a believer but she'd better get her butt on the bandwagon.

Mike is livid with the school psychologist. He wants a sit-down with the principal, teacher, counselor and psychologist. He also wants an apology since the psychologist diagnosed Daniel with ADD, clinical depression and anxiety disorder. Of course, it's always behavioral, it can never be anything medical. Mike wants there to be more education on their part. I have to agree. It's far too easy to say that your kid doesn't pay attention so he has ADD. We could have gone that route and medicated him but I just knew that he wasn't.

And I'm not in denial. And I have an EEG to prove it.

So, we have an appointment with the pediatric neurologist at Children's Mercy on December 2. I thought that was pretty fast. We'll have more specifics then.

Monday, November 16, 2009

Daniel, Children's Mercy and the EEG

*Not that you all would know but this post is going to take me forever since my cat won't let me put her down. And she's all spread out on my lap and arms. My cat has issues.*

We had the big EEG today. We were told that Daniel couldn't have caffeine or chocolate yesterday or today and that he could only sleep from 12-4am on Monday morning because they wanted him to be able to sleep for part of the test. Also, I hear that the flashing light portion works better when they're sleep deprived. Mean, but true.

So, I hunkered in for the first shift. We were good until 11:15 when Daniel started getting really sleepy. I kept telling him that he only had 45 minutes...30 minutes...15 minutes...until it was finally time for bed. He went right to sleep.

Mike took the 4am shift and, I have to say, he did an amazing job. He made sure to get himself all ready to go so that he wouldn't have to worry about Daniel falling asleep while he was in the shower. Mike then took him to IHOP for breakfast.

Of course, Jacob was mad because that's his favorite restaurant...why didn't they wake him up...blah, blah, blah. I told him to suck it up and go to school.

When I got up for the day, Mike left for work. I got Jacob and Hannah breakfast and Daniel announced that he'd like some cereal. Well, okay. Stupid me, I handed him a bowl of Cocoa Pebbles. Stupid. Luckily, he'd only taken a bite when I realized my mistake.

We decided that it wouldn't be fair to send Daniel to school on 4 hours of sleep so we kept him home. I got to see him go through all sorts of different phases this morning...the really loud and obnoxious phase, clumsy phase, quiet and withdrawn phase. The worst part was the drive to Children's. We were doing okay, singing and talking, until it started sleeting and the roads were congested and slick. I hate driving into downtown anyway. I was already worried about going somewhere I'd never been and trying to keep Daniel from falling asleep, I really didn't need the extra worry about the roads. Fortunately, I left an hour early because I managed to turn the wrong way...twice. Then, finally, I saw the building that said Children's Mercy Hospital. Should have been easy from there, right?

Next to Children's is UMKC (University of Missouri Kansas City) School of Dentistry. Next to that is UMKC School of Optometry. Next to that is Truman Medical Center. (I guess that's why they call it Hospital Hill)And they all have their own parking decks. And they all have very specific decks for employees. I could not find the parking deck for Children's. Silly me, you pull up to the front of the building and it's right there. Figures. It's never right out in front.

So, Daniel and I park on the Red Rocket level and walk toward the elevator. Even the parking deck lets you know this is a place for kids. It's the most vibrant parking deck I've ever seen. We follow the crowd to the first floor and head toward information. The very nice lady pulls out a map and starts telling me how to get to the EEG lab. Walk down this hall to security (yep...almost as much security as an airport). Pass through and take the Lightning Elevator to the first floor (I thought we were already on the first floor). Get off, turn left. Pass through the atrium and past the gift shop. Play chess with the gnome at the vending machines and turn right. Crawl under the barbed wire and make a slight left at the big tree. Turn left at the T and you're there! You can't miss it. I thank her, take my map with all kinds of lines and squiggles marked on both sides and head for security.

There, the guy asks for my license. I hand it to him and he swipes it. He smiles at me and asks me to verify my name. He looks at Daniel and says, "you must be Daniel. Good luck on your EEG." What? How did he know that? He knew everything just by scanning my license. Scary. He prints out a badge with my name and why we're there for me to wear and sends us on our way.

Somehow, we find our way to the EEG lab. We walk in and are told that we're too early. Go get some lunch. Seriously? So, we crawl back under the barbed wire to get Daniel a pretzel. Luckily, we didn't have to play chess with the gnome again.

When we return to the lab, there are now two people ahead of us and we're told to wait in the waiting room. I feel like banging my head on the wall. Luckily, these people are really efficient. One of the groups ahead of us has already checked in and as soon as we sit down in the waiting area, we're called. I'm thrilled to hear that our pediatrician has already done all of our paperwork for us and all I have to do is sign a couple of forms.

Back in the waiting room, the two dads (for once I was the only mom there) have turned on ESPN and tell me that I'm more than welcome to change it. That's okay. I've brought a book. One by one, the kids are called back. When it's Daniel's turn, we go into the room and Daniel won't stop talking. What does this do? Will it hurt? Why are you measuring my head? Can I touch that? Can you take that off to show me it won't hurt when you have to take them all off? Why are you putting one on my heart? Why are you coloring my head? What does the glue feel like? Are you done yet? Does this really measure my brain waves? Why do you have to do a blinking light? Are you going to make me go to sleep? What if I sleep through the blinking light?

You get the idea.

She kicks me out and tells me it'll be about 30 minutes. I head to the waiting room to read. The dads are pacing between sports stories on ESPN. It was making it very hard to concentrate on my book. Why don't guys think to bring something to do? After a few minutes, we all began yawning and looking like someone was going to pass out. We joked about how nice it would have been if the test could be a couple of hours long so we could take a nap. An eternity (30 minutes) later, I'm told I can come back into the room. She's wiping the glue out of his hair and she tells me he's all done. They'll send the results to our pediatrician. If we haven't heard by Thursday, we need to call and get the results. By Thursday. If the pediatrician doesn't have the results, they need to call and get them from the lab. By Thursday. It was hard to tell if this was the standard line she gives everyone or if she was being urgent or what. Ugh.

Poor kid was out by 7pm. I can't believe he lasted that long. He was mad that I made him take a bath but he still had glue in his hair and crayon measure marks on his forehead. As soon as I said, "done," he was out of the tub and in bed. Poor kid.

So, that was our adventure. Now, we wait.