Kids and Dogs

My life is full of them. Strange noise over the baby monitor - I think possible seizure Emma: Zeus puked on Carter's blanket Carter whines: Not again! They know the baby monitor is on, so they holler out what's going on so we know. It was a good test. They did well. Sunday morning, Sirius urped a little water and food onto Carter's blanket, so he was very dismayed that it happened again, only with a different dog. Zeus is odd. At first, I thought he brought up a hair ball. Nope. It was the material from one of their toys, he'd swallowed it to keep it away from big dog, apparently. I also found an inch long (at least) section of his leather leash. He's like a bull shark - eats everything. I just thought he chewed through the leash yesterday, not swallowed part of it. Silly dog. All these discoveries because of an odd noise on the baby monitor this morning.

We Deal With Stress Differently

I realized that yesterday. My husband and I are dealing with the news of the epilepsy diagnosis differently. I'm conscious of how I'm dealing with it. I'm trying to hit it head on. Anticipating various scenarios and putting plans of action into place to deal with them. Sometimes, I feel like the warrior mom, standing with sword drawn, and shield in place to protect my girl from this disorder I can't see, but I know is there. Acceptance wasn't an issue, I accepted, then went into fight mode. My plan is to do everything I can to keep her safe, then let go and leave it up to God to step in where I can't, and my energy has been focused there, that's how I'm dealing with the stress and the news. It's not a perfect solution, however. Lack of sleep and added stress is not good for the memory, I totally flaked on a child's parent teacher conference yesterday, and feel horrible about it. I've left a message, profusely appologizing for my lightmindedness. It took a while for me to realize though, that my husband isn't going to deal with things the same way. It seems to me, that to him, it's not big deal, and at first that irritated me. But as I've watched him, as I've looked back on this past week, I can see that my dear husband has been more stressed than usual. He's dealing with it, it's just being channeled differently. I realized last night, that I need to cut him some slack, we're different people, and we'll deal with things differently. Just because it's different, doesn't mean it's not right. It works for him, even if it annoys me sometimes. I'm sure my way annoys him at times too. I think dealing with stress can be hard for a couple, and if we're not careful, if we're not understanding and forgiving, then we make it that much harder on ourselves. We have enough stress right now, why add to it?

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.

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.

We're Odd, but Wonderful Creatures: Migraines and Seizures

I'm pretty convinced that the scented oil in the reed diffuser in the bathroom caused 5 migraines in a 10 day period this month. It was crazy, and now the doc has me on midrin, for when they hit. The bottle's been out for a few months, so it took me awhile to think of corking it, but I did on Saturday evening and haven't had a migraine since. In fact, I've been relatively headache free, it's amazing. Looking back, I can see that I've been dealing with headaches more frequently than before, and it's been the last couple months. I think the scent caused the headaches, and built up, or overwhelmed me after a time leading to the migraines. Almost like allergies. You're okay during spring for a while, then bam, out of no where, you've got allergies. Your body just couldn't handle the barrage of stuff thrown at it anymore. Now, the interesting thing is timing. Alta's seizure was on the heels of my fifth (and final) migraine. I asked the ER doc if it could be environmental, but the only thing they could check for was carbon monoxide. But now that I'm fairly certain the scented oil is what messed me up, I did some research. I wanted to know if there was a link between scented oils and seizures. The epilepsy foundation in Ontario, Canada has a list of essential oils to avoid if you have a seizure disorder...they can trigger seizures. Unfortunately, the packaging for the diffuser and oil is long gone, and there's no label on the bottle, but I will be making a trip to the store to read the ingredients and find the manufacturer and see what I can find out. I'm curious too, if it has some of those known seizure trigger oils, if there's a label. I'm not interested in suing anyone, and I don't want to leave that impression, but if there's no warning, I think there should be. It wouldn't have helped us before, but it can in the future. I feel like the canary the miners used to monitor air quality before technology stepped in. If the canary died, they knew the air was dangerous. Unless Alta had seizures that we don't know about, then I had a severe reaction before she did. I'll be the canary from now on. If a scent gives me a migraine, it's gone. I'm not letting her get to the seizure point again. I'm relieved to have found a possible trigger, I feel like I'm redeeming myself...I keep flashing back to that morning and going over what I should have done vs what I did. Paul tells me I did fine, and I have to trust him. But this helps, finding a connection, a reason, a trigger almost makes up for it. At the very least, it gives me somewhere more positive to focus. I never thought I would be thankful for migraines, but if not for that, I wouldn't have gotten rid of the scent, and it could still be affecting her. They were definitely worth it in the end.

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.

Writing Update

I've added over 2k words so far, and I think I might sneak up stairs (or down) to add some more. It's just so hard to hear the voices in my head when Kim Possible is on in the background. I'm not the type of writer who can have back ground music, so background kids or tv is out of the question. Although, I can get by with chanting monks. My favorite background noise, though, it white noise, like the washer and dryer going. Writing has actually encouraged some laundry days here. Thanks for stopping by!

Ever Want to Know...

What a five year old notices? I can tell you at least one. Here's a conversation I just had with mine. him: Mom, I gotta tell you something, but it's kind of weird. me: What? (he should have been in bed an hour ago). him: I have TWO shadows! One in the front and one in the back. I couldn't help it, I laughed, and then tried to explain why. I think he feels better about it now, but he was a little disappointed at first.

Werewolf Conversation with a Five Year Old

He doesn't want to sleep in his own room, by himself. His sisters told him, "no." He's on his way to ask his brother now. But before I got him to go up and do that, he tried to convince me he needed to sleep in my room. He said he was scared because of the werewolf on the Jonas Brother's haunted firehouse episode. I suggested he wear the Santa hat that's still out from last year, explaining that even werewolves liked Santa - he didn't go for that. He then asked if I had werewolves in my room, I told him no, because I wrote about vampires the wolves left me alone. Here's our convesation: "Mom, werewolves aren't real" "Really? Then why are you afraid of them?" "Because I'm five," he said with exasperation - like it's obvious. So, yeah, my son is scared of something he told me isn't real, and it's because he's five. At least that's his logic. He makes me laugh...love that little boy!