Wednesday, May 19, 2010

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.

Thursday, May 13, 2010

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.

Wednesday, May 12, 2010

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.

Tuesday, May 11, 2010

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 "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!

Friday, May 7, 2010

Good News

I just got a call from Children's Mercy Hospital, and they can fit Alta in for her EEGon Monday! We went from July 2nd, to May 26, to May 10. I haven't heard anything about yesterday's MRI, but her doc wouldn't get it until today, so I figured it would be Monday before we heard anything on that front. Again, thank you for all the prayers for the many things our family's needed this year!

Christopher’s Good News

Back near the beginning of the school year, I blogged about Christopher being invited to take the ACT, which he did in December. A few months later we got the results: main score 19. In the breakdown, he scored well enough in two different sections to meet the benchmark that said he was ready for college level courses in those areas.


The district just released the following information. I highlighted my boy's name J

Look at all the kids from his school!


Four 7th graders scored to "win" on a national level, he wasn't one of them, but three of the four are in his class. I find that amazing. I don't think he knows how lucky he is to have the teacher he does!


Anyway, here's the media release, it's a copy and paste, so it doesn't look as fancy as the original pdf doc, but you can find the original at NKC School's blog on blogger.



Media Release:

May 5, 2010 CONTACT:

Darlene Minx

Office of Communications

(816) 413-5048



Graders Score State & National Recognition

for Duke Talent Search

- - - - - - - - - - - - - - - - - - -

Kansas City, North Twenty-seven 7th graders in North Kansas City Schools

have been named state winners in the Duke University talent search known as the Duke

Talent Identification Program (TIP). The program identifies 7th graders who perform

at the college level in the SAT or ACT.

Duke Talent Search state winners include the following:


Casey Allen

Jackson Barnes

David Becker

Charles Clapham

ChristopherChg Durrant

Dustin Gier

Elizabeth Little

Kayla Mansil

William Niederberger

Kevin O'Brien

Jose Somoza

Calvin Young


Samantha Brown

Cordell Collins

Justin Duong

Jennifer Elpert

Alec Short

Sierra Smith

Leland Williams


Jessica Mills Nam Vu


Danielle Bates

Ryan Ganaban

Alexander Nissley

John Pittala

Joseph Watts

T h e N o r t h l a n d S c h o o l D i s t r i c t f o r I n n o v a t i o n & E x c e l l e n c e

2000 NE 46t h St. Kansas City, MO 64116 816.413.5000 fax 816.413.5005


Page 2 of 4


Austin Edmisten

The Missouri recognition ceremony for state winners is set for Friday, May 21,

11 a.m., at Drury University in Springfield.

Four of the 27 state winners also have earned national recognition as Grand

winners. The four include David Becker, Dustin Gier and William Niederberger of

Antioch Middle School; and Ryan Ganaban of New Mark Middle School.

They are invited to attend the national recognition ceremony to be held at Duke

University in Durham, North Carolina, on Monday, May 24.

For 30 years, Duke TIP has identified academically talented students in a 16-state

region who have scored in the 95


percentile or higher on an approved state criterionreferenced

test or on an acceptable sub-test of a grade-level achievement test. That region

includes the states of Alabama, Arkansas, Florida, Georgia, Iowa, Kansas, Kentucky,

Louisiana, Mississippi, Missouri, Nebraska, North Carolina, Oklahoma, South Carolina,

Tennessee and Texas.

Once students have qualified, they are encouraged to then take either the ACT

Assessment Test or SAT Reasoning Test to earn academic recognition at the state or national


T h e N o r t h l a n d S c h o o l D i s t r i c t f o r I n n o v a t i o n & E x c e l l e n c e

2000 NE 46t h St. Kansas City, MO 64116 816.413.5000 fax 816.413.5005


Page 3 of 4

To be named a state winner in the Duke TIP, 7th graders must meet at least one

of several criteria determined for ACT and the SAT testing.

For ACT, a student must meet at least one of the following — a score greater than

or equal to a 20 on English or Math, or a score greater than or equal to 21 in Reading or

Science. Students may also qualify by earning three of the four following scores: a score

of 19 in English or Math, and a score of 20 in Reading or Science.

To earn state recognition using the SAT, 7th graders must earn at least one of the

following criteria ― a Math score greater than or equal to 520, a Critical Reading score

greater than or equal to 510, or a Writing score greater than or equal to 500. They can

also earn state recognition with two of the three following scores: a 510 in Math, a 500 in

Reading and a 490 in Writing.

Seventh graders with the highest scores on the SAT or ACT are honored at the

national Grand Recognition Ceremony. To qualify for Grand, students must meet at

least one of the following criteria.

For ACT, students must receive at last one score that is greater than or equal to 28

in English or Math, a score greater than or equal to 30 in Reading, a score greater than or

equal to 26 in Science, or a composite score greater than or equal to 26.

To earn Grand status using SAT scores, students must earn at least one score that

is greater than or equal to 670 in Math, a 650 in Critical Reading, a 650 in Writing, or a

T h e N o r t h l a n d S c h o o l D i s t r i c t f o r I n n o v a t i o n & E x c e l l e n c e

2000 NE 46t h St. Kansas City, MO 64116 816.413.5000 fax 816.413.5005


Page 4 of 4

combination score in Math, Critical Reading and Writing of 1850.

By qualifying for Duke TIP recognition, participating students become part of the

Duke Talent Search family through their sophomore year and are offered academic support,

which includes access to academic resources, opportunities to participate in summer

programs, newsletters, college guides and more.

For more information about the Duke Talent Identification Program, contact Sherry

Samples, North Kansas City Schools coordinator for advanced educational programs, at

(816) 413-5052.


Thursday, May 6, 2010

Wellness Updates

Emma (concussion from February) is doing well. She got to ride her bike yesterday. The medication she's on has dramatically decreased her headaches, but they're still there, just tolerable. We'll give it plenty of time to kick in before we try something else. Carter: ear infection gone, along with his medicine :) Alta: passed the one week mark of seizure free, we're going on 9 days. This is good. The longest we've gone since this started 3 1/2 weeks ago is 2 1/2 weeks, so we still have some days a head of us to break that record, but we're trying! MRI - today. The results will be in doc's office tomorrow. We should here tomorrow or Monday. Most likely, it will come back clean. EEG - May 26th Christopher: he's fine, and depressed about it. He really wants an excuse to miss school. He's been told that if he gets sick, we'll assume it's on purpose. Then he'll be grounded. ;)


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.

Rascal Flatts - Unstoppable - Loved this message. Needed it today.


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.

Monday, May 3, 2010

Alta M. Updates

Looks like things are still going well. I slept harder last night than I have in a week. I'm worried I missed something...probably not, though. Emma would have said something. So, anyway, hope to pass the one week mark tomorrow of seizure free-ness :)

Writing Updates

I'm still baffled and befuddled with chapter four. I think the original chapter 7 is now the new four. I think part of my problem though, is not having a better understanding of my characters, so today, I'm getting to know them better. Understanding where my vampire came from and what was going on in the world at the time. I know the back stories on my vampires from book two, but not from book one, so he's getting one. I've got timelines and maps printed off, ideas swirling, and hopefully, but the end of the day, I'll know when, how, and who turned him. I'll have a better understanding of his life, and what drives him.