I Think I Understand

It's amazing the difference time, perspective, and knowledge make. When Alta had her first seizure, I was up hours before, wondering the house, checking the doors and windows. There was a general unease, and I knew something was off, something was going to happen, I just had no idea what. When the drama started with Alta three hours later, I knew that's why I'd been up. To refresh your memory, or if you're just jumping into my blog, I heard Emma yell at Alta to be quiet, they share a bunk bed, with Em on top. Because I was already up, I went to check on them, that's when I found Alta unconscious in her bed. That was one of the scariest things that's ever happened to me. You always assume you'll call your child's name, touch their arm, something, while they're sleeping, and there will be a response. Your heart doesn't just drop when you don't get that response, it flies from your chest, breaking bone, and ripping flesh on its way out. I admit it. I panicked when I couldn't wake her up, and for weeks after, I beat myself up about it. I looked back, and criticized my reaction. I screamed for my husband, who came running. Later I over heard him telling someone: my wife doesn't panic quickly, but there was something in her voice that morning. I knew it was bad. When he got there, I was pulling her out of bed, still trying to get her to wake up. I handed her off to him, yelled for him to get her downstairs, where paramedics could get to her easier, and ran for the phone. Paul tells me I had the 911 dispatcher on the phone in 30 seconds from when I found her. But still, I beat myself up. I kept telling myself I should have had her laid out on the floor ready for CPR, should have checked her pulse and her breathing. I didn't...even now, it still upsets me that I didn't think to do that. But what has time, perspective, and knowledge changed? Last week we got Alta's epilepsy diagnosis. I realized that I needed to be awake that morning, NOT to test my rusty CPR skills, but to get the ball rolling. We would have completely missed the other two seizures if I hadn't been awake enough to check on the girls that morning. We NEEDED to know about the seizures so we could get help for her, so we didn't unwittingly send her into dangerous situations. The trust my husband and God put in me to take care of these little ones is not misplaced. In the early weeks I felt it was, that i underperformed. But, through His sweet mercies, I realized that's not true, and it took time. It took perspective. It took knowledge.

We Can't Make it Go Away, So We'll Make it Fun

That's the outlook today on Alta's diagnosis. I am not physically capable of taking this affliction away from my daughter. If I could, I would. I also know that if God wanted her healed, He would. Our prayers would have been answered that way. I don't blame Him for this at all. It's something that will teach us, something that will help us grow, maybe bring us closer together, increase our patience and understanding of those around us. There are numerous GOOD things that can come from this. It's not a death sentence, merely an inconvenience. For that, I am grateful. That doesn't mean there won't be some suckiness that comes along though. So, we're going to do our best to balance the two. First, for safety, a medical ID bracelet. For those times we're not around. But cute, not sterile, severe looking. Something that's fun to wear, but useful at the same time. I'm working with a friend on it. For peace of mind: looking into little dogs, whose sole purpose is to attach itself to my girl, and bark its head off if she has a seizure. He will be her assistance dog, and will hopefully help the rest of us sleep better. I don't expect he'll bark if she's just turning over, but if she does something weird or alarming, then maybe he'll bark. Although the baby monitor is helpful, the times it wakes me up unnecessarily are too ginormous to count. I really would like to feel comfortable sleeping again. Heck, so would Emma. For Fun: Emma has decided to retire Concussion Girl, but Alta has chosen to keep Seizure Girl going strong. That' what she wants to be for Halloween :) So, I've got to come up with a costume design or something for her. We're also thinking about making a comic book for her this summer. She can come up with Seizure Girl adventures and we'll write them out, add some illustrations, that sort of thing. We've talked about giving a quick presentation to her new class in the fall, of what epilepsy is and isn't, and what they can expect, and what they can do. I don't want her whole class wigged out if she does have a seizure. I'm selfish, I want the teacher's attention focused on my girl. The better prepared her class mates are as far as what to expect, the better. We may use the comic we make over the summer for this. So, that's the game plan so far. I can't make it go away, but I can make it fun may be my motto for a while.

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!

Prayers

If you've been praying for our family, thank you. I thought I'd share one way those prayers have been answered. Alta's EEG was scheduled for July 2 - that's quite a ways out there. My understanding, is this is the best test we have for confirming type of seizure, although it may still come back with nothing. Last week, after Alta had two more seizures, two mornings in a row, her neurologist told me they'd try to move her up the list. I heard from radiology yesterday, and they had a cancellation and I was on the list of people to call. She now has an EEG scheduled for May 26. You're prayers made this possible, so thank you. Will the date change the diagnosis? Will it change anything in her treatment? No. But it may give us answers, which gives us a place to start. And for whatever reason, answers are comforting. Sometimes, but not all the time, it's easier to face the known, than the unknown. I can prepare to fight the enemy I know, but that element of surprise from the one you don't, well, sometimes that's what decides the battle. We may know in a couple of weeks, instead of a couple months. That's definitely an answer to prayer. The Lord knows how much I can take. He's taking care of us all.

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.

Our Way of Dealing with Stress

The girls and I have decided they need super hero names. Emma is (drum roll, please) Concussion Girl, which leaves Alta only one possibility; Seizure Girl. I've talked to them, and they're in complete agreement. So far, we've got a couple super hero powers for each girl. Concussion Girl can confuse her enemies, make them forget where they are and what they're doing, or even knock them out with one thought. On a good day, she can make them forget who they are, thus stopping bad behavior. Seizure Girl can make the ground under the enemy quake. She silences her enemies by immobilizing their tongues. It's a great interrogation technique. She can ask questions, and they can nod yes or no. She also has the ability to bring unconsciousness on with a thought. Help us out, what other super-hero powers can we give these two?

Seizure Update

Alta had a great morning. I think we were all excited about it. I woke up at 5:30 this morning and was in and out of sleep. Every sound I heard I opened my eyes, looked at the clock, and waited. Would there be more? Which child was moving around? Would she have a seizure without making sounds? How would we know? Instead of giving into the questions and fear, I stayed in bed. Just because I couldn't sleep didn't mean I should wake her up. When those moments of fear or frustration creep up, and tears threaten to spill. When I want to run to God crying and asking why, I remind myself that it's not really that bad. Yes, it looks like she has a seizure disorder, but it could be worse, there are many, much more severe seizure disorders that what she may have. I'll be thankful for whatever good I can get. I remind myself, that when I feel like crying, that's the perfect time for praying, it's much more useful for my family. I also remind myself that when things get tough, we just need to get tougher. No one accomplished anything by giving up. We have this country I love because ordinary people got tougher when life got tough. I look at my ancestors and all the adversity they went through. I have a wonderful legacy to draw strength from because when life got tough, these people got tougher. I have a very firm belief that God won't give me things I can't handle without him. I may flounder a bit, and success might not be pretty, but we will get there, and we'll be all the better for it. Maybe this is the legacy our family passes on, and lesson for my children. As for the immediate future, she has an MRI appointment scheduled for next week, still waiting to hear about the EEG. Began researching the two medications the doc mentioned yesterday. Thanks for stopping by, and for all the prayers. Our family really appreciates it.

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.

Maybe? Possibly? Another One?

I dropped the kids off at school this morning, and my oldest daughter tells me, as they're getting ready to get out of the car, "I think Alta had another one." I'm confused: Another cookie? Another bowl of cereal? Another what? She tells me, "Another seizure, this morning." Em says she heard the strange hiccuping/drinking water noise this morning. She looked at the clock and it was 5:38. It lasted under a minute, she guessed around 10 seconds. Why didn't she come to get us? She wasn't sure, and she didn't want to scare her sister if she was wrong. So, maybe she had another one, maybe she didn't. We probably would have been able to tell if we'd known to check on her, Emma knows know to get us, either way. I'm happy she's in there to give us a heads up though. I tried using our old baby monitor, so I could hear, but it doesn't work. Looks like I'll be borrowing one from a friend. I'm replaying last night's events in my head looking for signs or indicators that something was off. The neurologist said that with one of the seizure possibilities, the kids feel kind of off, and may even come and complain they're not feeling well. There's the possibility of twitching in the face, or odd mouth movements. I need to know how far in advance those signals can show up. Around 9pm last night she came down complaining that she didn't feel well, that she had a headache. I gave her some Tylenol and sent her back up to bed. Because I'm paranoid, I took her temperature, it was fine. I know sometimes high fevers can trigger a seizure, so I checked. It wasn't an issue. Where does that leave us? The school nurse is trying to find out from Emma if she heard any movement - I didn't have a chance to ask her before she was out of the car and in the building. Once I know that, I need to call the neurologist back and report the possibility. I don't think that will change anything at this point though. She still scheduled for an EEG in July, and if it's the type of seizure the neurologist is leaning toward, they don't really treat it because it happens during sleep and the kids usually grow out of it. We'll have to wait and see. Isn't parenthood fun? Definitely not boring!