Results, We Have Them

From the MRI: everything looks good. Nothing they could see that would cause the seizures. EEG: They did see something: generalized seizure patterns My little girl is epileptic. I don't know how to feel about this. I was prepared for the rolandic seizure diagnosis, but this is more. Instead of being limited to sleeping moments, the seizures can happen anytime, anywhere. The fact that we've only noticed ones during sleep is just a fluke. In my last post, I commented on how odd the tech's comment was when I asked if Alta'd had a seizure during the test. She said: "I didn't see anything you described to me." So I wondered what she did see. Now I know. Toward the end of the test her eyes fluttered, and that fluttering matched up with the seizure patterns on the EEG. We need to watch her for the small seizures, like fluttering eyes and staring into space, as well as the big ones. I feel like crying over it, but I'm not sure why exactly. I was prepared for the other one, maybe I would have cried a little over that one too, I don't know. But this is more than I expected. On the other hand, I'm very grateful. I have an answer, and that's what I wanted, right? I also know that it could be worse, and it's not. The other reason to be grateful, it's not a brain tumor causing this. That would definitely be worse. I guess it's a mixed bag of emotions. Gratitude that things aren't worse, worried about my baby girl's future, and how epilepsy will affect her. On the fun side: Alta wants to be Seizure Girl for Halloween, and we're planning a comic book about her character in the summer.

Alta's EEG

She had it done yesterday (5/10/10), and things went well. We were all exhausted though! Which was the point for her, but the rest of us - not so much. Poor baby had to stay up until midnight Sunday, and get up at 4am Monday. I think we all slept very well last night - I know I did :) They hooked her up to a bunch of wires, all over her head. I have pictures, on my phone, so who knows when anyone will see them, then I had to leave. They brought her back about an hour later. They were really nice, she got a cute bear for being so good, too. She held onto it for the rest of the night. During the test they let them sleep for a bit, then do some flashy light things, then work on deep breathing exercises. I know some things, like the flashy lights and the sleep deprivation, can be triggers for seizures. I asked the tech if they were trying to induce a seizure, or if they were just trying to get the brainwaves to start changing. She said they're not going for a seizure, but some time's it happens. When she came back out I asked the tech how it went, if she was okay on the table. Basically, did she have a seizure. It's kind of a yes or no question, don't you think? But the answer was kind of...off. "I didn't see any of the things you described." So, that begs the question: what did she see? It was just odd phrasing, but it makes me wonder if she did see something. Are there other seizure signals/signs I should look for? Anyway, she said to call the doc for results in 3 biz. days. I'm still waiting for a call about Thursday's MRI Anyway, on a good, not confusing note, we've hit the two week mark for seizure-free nights. Yay! Again, if you've been praying for us, thank you so much!

Updates

Lots of running today! I got Christopher to school, but while I was doing that, I multi-tasked. I was on the phone with the kids' pediatrician. Emma was in tears, sobbing that her neck hurt. She rarely cries because of pain, so I knew she really hurt. They could fit her in at 9am. Kids can't be dropped off at elementary school before 9am. Made another call, and my friend Michelle, who lives around the corner, said she could take them to school so I could take Emma to the doctor. Doc looked over Em and decided the muscle was tense, maybe from not using it. She rode her bike the other day and moved her head a lot more. I dropped her off at school and picked up Alta for her MRI. We actually made it on time. I consider that a small miracle, especially after the morning I had. Didn't get breakfast, so snacked on some chocolate I snagged from the counter on the way out. Alta did great with her MRI. It's amazing what they have to make the kids more comfortable. While she was in the MRI tunnel, she had special goggles on, head phones, and a microphone. She watched a movie through the goggles! The sound helped cover up the machine sounds, and they could communicate using the headphones and microphone. She had a stuffed animal with her, and they let her bring it it. After I dropped her off, I came home, ate something and ended up falling asleep on the couch until I had to start my afternoon pick-ups. Today was one of those days though. The stress, frustration, worry, sleepless nights kind of caught up to me, and I wasn't in the best of spirits. On the way home, the Lord answered a prayer I didn't know I prayed. I heard a song on the radio by Rascal Flats called unstoppable. The words that blazed brightly in my mind, the ones that spoke to me were these; "Get on your knees and dig down deep. You can do what you think is impossible." Good words to remember in the coming months, I'm sure. The video for that song is in the next post.

Seizure Updatee

I heard from the neurologist herself. I thought the nurse would call, but the doc did instead. She's leaning toward Rolandic seizures. Rolandic is the area of the brain that controls the facial area, mouth, tongue, etc. It looks like it's starting there and working its way out to something bigger, like a grand-mal. They're going to move her up on the list for the EEG, as well as schedule her for an MRI, just to double check head ct she got during the ER visit. If it happens again, before the tests, we call and let them know. Dr. Hashmati may put her on medication at that point, because of the frequency. So, seizure update, there you have it. My writing rant is coming up next.

Waiting and Writing

I've left a message with Children's Mercy Hospital's Neurology department, I'm waiting for them to call me back. Emma's had a referral (and approrpriate paper work in) for 3 weeks now, and I haven't heard from them. Today they heard from me (nicely). Also left a message for them about Alta's referral from the ER yesterday. Hopefully, I can take both girls in at once, we'll see. Logic whispers a warning: Don't count on it. So, while I wait for neurology to call back, I'll be reworking chapter one, using the suggestions, ideas, and comments from Saturday's critique session. Some of them were very helpful. These changes should help me make chapter one as good as I wanted it to be. I'm learning, writing is journey. It's filled with twists and turns, and ups and downs. It's fun.

ER Update

It's 5:19 am and she's awake. She's acting like herself, and the nurses are trying to get a movie to play for her. She wants to watch Hoodwinked. We've been talking about what she remembers and I've been feeling in the blanks. The last moments she remembers are before the ambulance arrived. But she's having some fuzzy memories of last night. Breaks my heart to hear her say she thought she was going to die. I told her I was scared too, but she was really brave. She's hungry, but can't have anything to eat or drink yet, and her head hurts, which they've given her medicine for. She's slowly noticing things like tubes, IV's, wires, and a hospital gown. She's very much herself, and relief seems like such a puny word for what I feel, but given the amount of sleep I'm running on, it's the best I can do. Thanks for all your prayers, we appreciate them very much.

ER Visit - Scared

I'm sitting at the parent computer here in Children's Mercy Hospital. It's 1:01 am. Our 10 year old fell tonight while we were at a laser tag birthday party and hit her head on the concrete floor. We didn't know about it until we got home. I have no problem admitting I was scared when she couldn't answer simple questions, when she complained that her eyes weren't working right, or when she was pale and sick to her stomach, but it went beyond merely scared when we asked her to get in the car and she walked into the front door. She stood there, coat askew. When I asked if she was okay she said, "Huh," in a loud voice. I called her name and she replied, "What?" and murmured that she couldn't see. My little one couldn't see, couldn't hear. I was beyond scared. We got her into the car, which was not easy considering her condition, and drove around the corner to our friends' house. These are friends we know from church, and Paul and Tim gave Emma a blessing of healing. Our plan to stop there worked out well for us, because she had gone down hill so fast I no longer felt comfortable taking her to the hospital ourselves. We borrowed our friends' phone and called 911. She was completely disoriented, sick, confused, and unsteady; nothing we would have noticed or been able to do anything about in the car. She was wheeled from the ambulance, through the ER doors of Children's Mercy, and into an exam room. She was then hooked up to machines, and her vitals taken. Once they had all the info they needed she was immediately taken for a ct, which was read quickly. She's been admitted for overnight observation. She's sleeping in her room now, this is the longest she's gone without getting sick. Her ct scan is clear, there was no bleeding in the brain which is what they were most concerned about. Diagnosis is concussion. She should go home sometime tomorrow. I cannot leave this post without expressing my deepest gratitude to the staff here that has taken such good care of us. To the EMT's who came when I was terrified and took my little girl to the hospital. They've all done such a fantastic job at not only taking care of her, but of calming me so I can be more useful to her. But most of all, my most sincere gratitude and thanks goes to God, for hearing and answering my prayers. For bringing me peace. For watching over my little girl.