The Chronicles of My Three Peanuts

Make a Wish-Day 2

2011-03-07T18:31:00.000-08:00

We got picked up in our limo bright and early Monday morning and took a 3 hour flight to Orlando! The kids did really well on the plane in spite of the fact that we really didn't pack them much to do! Oops. The airline let us board first and the pilot announced that he was dedicating the flight to us and everyone clapped! :)

One of the first things we saw when we arrived in Florida was this lizard. I love lizards and tried all week to catch one but they are super fast! Kaydence was scared of them so she wasn't nearly as thrilled!

After we picked up our van we headed right to Give Kids the World where we checked in and were told to head off to eat lunch. We went to Katie's Kitchen which is a restaurant at the village that serves both lunch and dinner everyday. The kids couldn't believe everything was free! :) Shortly after lunch we got checked in and then it was off to explore the village!

We had our own private villa and they'd stocked the refrigerator with pop, chocolate cake, and left presents for the kids on the kitchen table! We all changed into shorts right away and decided to see what all the village had to offer.

The girls(and Jake) made their way to the Ice Cream Palace right away which serves ice cream, sundaes, banana splits, and shakes everyday from 7am-9pm. That would be the first of MANY daily visits to get ice cream.

I really don't even know how to describe how awesome Give Kids the World is. It's such a magical place and they really think of everything possible to make your stay wonderful and help you forget real life. The doctors, therapies, appt's, prognosis, everything. I think I spent less than 5 minutes all week thinking about anything other than what we were doing then and there. And that's how they intend it!

After exploring the village I headed to the orientation center where they give you all your tickets and tell you about the village. Jake took the kids to the theater where they had an activity going on. I don't know what it was but I know it involved whipped cream pies flying!

We put the kids to bed early since we'd had such a long day and then we ordered pizza! The village offers free pizza after 7:30pm so we took advantage of that often! Overall the day was tiring but good. The warm weather and sunshine along with the flowers and green grass were enough in and of themselves to see!

Stay tuned for day 3! :)

Make a Wish-Day 1

2011-02-27T14:59:00.000-08:00

Today isn't technically day 1 since we're not flying out until tomorrow but Make a Wish did give us a hotel stay before we left so I'm considering this day one! I want to make sure to journal each day so this seems like a good way to remember everything we did!

We got up bright and early for the 4 hour drive to Minneapolis. The hotel water park was only open from 10-1pm so we wanted to get in right away. We arrived just in time for it to open and the kids had a blast.

We spent about 2 hours in the water park and then drove over to Mall of America(which is directly across from our hotel) and had lunch at Bubba Gump's shrimp co. We stopped at the Disney store so Kaydence could pick out a princess dress to wear to Magic Kingdom. We'd found one for Kylie at a thrift store a few days earlier. Emeric didn't seem to mind that he didn't get a prince outfit. ;)

After a couple hours at Mall of America we headed back to our hotel. The kids were bummed because the arcade was closed but they were all so tired that hanging out in the room seemed fine with us!

Right now we're waiting for our pizza we ordered and then plan on getting the kids in bed early! Our limo is set to arrive at 6am!

Less than 24 hours until WARM WEATHER AND SUN!!

Worn out!

2010-10-07T08:45:00.000-07:00

I think school is wearing this boy out!

I just realized...

2010-10-02T17:33:00.001-07:00

Once again it's been a long time since I've updated here. You've got to be pretty funny, witty, or having an interesting story to tell to keep an interesting blog. Or at least one that people will read! I pretty much just use this place because I like to write. That's probably boring to most.

We've gotten back into the routine of the school year. With both the girls in school full time and Emeric in preschool part time I've got quite a bit of time to myself. I've been mostly using the time to study for the two classes I'm taking but I'm also just enjoying sitting at the coffee shop reading or refreshing my facebook page to see if anyone wrote anything interesting.

One thing I've definitely realized about myself since having 3 kids in school is that I am HIGHLY disorganized. I used to think I was just moderately disorganized but... it's bad. So, when you're a really disorganized person how do you even know where to start? I could write a list but I'd probably lose it. I could rent a library book on organization but I'd misplace it and forget to bring it back and rack up even more late charges at the library. Anyway, I decided that I should probably figure out this organization thing being that I'm almost 30.

Am I really almost 30?

I'm gonna need some therapy if I start coming to all these realizations about myself too quickly!

It's not so bad.

2010-07-23T15:03:00.000-07:00

When Emeric was seeing a specialist in Cleveland and they stopped accepting his insurance I was bummed. Until I realized the next best doctor was in Texas. I'll take this scene over downtown Cleveland any day! So whenever I have the urge to complain that we have to fly half way around the country for care I remind myself that it's not so bad! :)

Summer

2010-07-14T17:01:00.001-07:00

I can't believe summer is already half way over! I'm trying not to rush it more by saying things like the girls go back to school in 7 weeks! Wow! We're already planning on being very busy the rest of the summer. We've got a family reunion coming up, a trip to Houston ], our Epilepsy Stroll and a visit from my dad to name a few!

I start school August 31st so I'm sure that will keep me pretty busy! Emeric will be in school M-TH mornings and his nurse will still have him some of the time so that should give me enough time to do homework!

I'm excited to get back into some of the Bible studies I am a part of during the school year too. I've met a lot of great friends and had some great discussions with the people involved. They are all so great and still contact me in the summer checking in on Emeric! :)

Well, back to weeding the garden. It's pretty sad when my arm muscles are sore from pulling weeds!

Home.

2010-06-27T12:13:00.000-07:00

I have been such a bad blogger these last few months... Not even really sure why...

I got home yesterday from a week counseling at Bible Camp. The Mennonite North Central Conference puts on a camp each summer and I've counseled in Senior camp the last two years. This year we had 50ish campers from ages 13-18. It was a blast and I posted a ton of pictures on facebook so I'm not going to re-post them all here! :)

The theme this week was, "The Bible: Use it? or Lose it?" which was my corny idea. lol Basically we discussed if the Bible was still relevant, why, and how. Of course we decided it was and we explored different ways in which it was. A few people shared stories about how the Bible had been useful to them in a hard situation. I shared a bit of Emeric's story as well.

The days are pretty long at camp... we're up at 7:00am and head to breakfast. After breakfast we had game time, morning session, worship time, small groups and lunch. After lunch is fine arts, afternoon rec, water fun and then dinner. After dinner is evening rec, night session, worship, devotions, and finally... sleep. Although sleep is hard to come by at camp! With musty, damp cabins that keep your blankets wet, giggly campers, a 2" mattress, and other factors it's not hard to see why!

I'm really glad I decided to go back. I was worried about missing my kids and prayed a lot about that and can honestly say I didn't. Of course if I thought about it long I would but there just wasn't enough time for that. We kept too busy! I really made an effort to stay present and keep my mind on camp instead of other stuff because it's pretty hard to be effective otherwise. It was also nice to be technology free for a week! Really makes you realize how much our society lacks in true relationships and conversation when you don't use a cell phone or computer all week!

I'm now home and trying to rest up before we start packing AGAIN to go camping this coming weekend!! :)

2010-05-26T19:57:00.000-07:00

Tomorrow is Kylie's last day of 1st grade! I think she's pretty ready to be done and I won't mind not having to get up early everyday! Although I think my internal clock is set now and I'll probably still get up at the same time! She's had a great year. She has done so well with reading & spelling and has come a long way with her math skills.

Since today was Kaydence and I's last day together before Kylie is out of school I decided to take her to town and let her do whatever she wanted(well, within reason!). First we went to Walmart and she bought some gum. Then we headed to Menards to play on the slides and in the playhouse they had set up. From there we went to the mall and she rode on Garfield the cat while we wasted time waiting for Pizza Hut to open. After lunch we drove to our local Community Center to go swimming and play in the gym. The rest of the afternoon was spent sliding, picking out candy, going back to Menard's to play on the slides AGAIN, to the grocery store, to a little town outside our own to play on the slide and drink from the big lion water fountain and a few other random stops. All in all Kaydence and I had a great day and I just can't believe how fast this year flew by! It would be easy to feel guilty and think of all the things I could've done with her this year... more painting, reading, etc... but at least realizing how fast time flies reminds me to never take a single day for granted!

Unfailing Love

2010-05-02T15:54:00.000-07:00

I think we all know someone that has trust issues. I'm one of them. Maybe you are too?

It's hard for me to really believe in people, to think they'll come through for you, to think you're worth coming through for. So to compensate for that insecurity it's easy to become controlling. If I can control my surroundings and my relationships than I don't really have to trust. I don't need to because since I'm in charge I already know what will happen. I know that I can rely on myself if no one else.

Unfortunately, I've watched this behavior play out time and time again in my life. And truthfully, I always knew it was a problem but I didn't really think it was that big of a deal. Until I realized that I've done the same in my relationship with God. Because I feel like I can't trust people or that they'll eventually let me down I've transferred that believe into what I believe to be true about God. I believe he'll eventually let me down or that he'll tire of me. Or maybe I'm not good enough or don't have enough faith.

Maybe he would heal Emeric if only I had more faith. Maybe he's punishing me for something? Maybe he just doesn't really love me as much as some of the "better" Christians. Sad to say I've believed all these things, maybe still do believe most of them. As one of my favorite songs says, "I'm caught between the promise and the things I know". I know what the Bible says but some experiences in life have told me differently. That is, if I believe God and humans are the same.

But they aren't.

Psalm 102:25-27 says,

Long ago you laid the foundation of the earth
and made the heavens with your hands.
They will perish, but you remain forever;
they will wear out like old clothing.
You will change them like a garment
and discard them.
But you are always the same;
you will live forever.

So what does that verse have to do with what I'm talking about? Well, I realized today that the Bible talks over and over again about God's unfailing love. About his faithfulness. If God is always the same that means he's always faithful and his love is always unfailing. It doesn't mean that when I'm good enough he'll love me and be faithful. It doesn't mean that when I trust Him enough he'll love me. It doesn't mean that when I've done enough for Him he'll love me.

No, God loved and accepted me before I'd done anything for Him. He loved me then and I'd done nothing. And because He will never change His love will never fail. The problem is that we've all been hurt in our lives. We've all been let down, especially by the people we love. And so it's hard not to assume God is the same. That he'll let us down. But that belief is a lie and until we see it as one we'll live in bondage because we can never be good enough.

Psalm 86:15
"But you, O Lord, are a compassionate and gracious God, slow to anger, abounding in love and faithfulness."

Until we're able to accept that God's love for us isn't based on what we do for Him we'll always be stuck. Stuck feeling like we're a big let down. Stuck feeling like we're unlovable or unworthy.

Romas 8:35-39
"Can anything ever separate us from Christ’s love? Does it mean he no longer loves us if we have trouble or calamity, or are persecuted, or hungry, or destitute, or in danger, or threatened with death? As the Scriptures say, “For your sake we are killed every day; we are being slaughtered like sheep.” No, despite all these things, overwhelming victory is ours through Christ, who loved us .And I am convinced that nothing can ever separate us from God’s love. Neither death nor life, neither angels nor demons, neither our fears for today nor our worries about tomorrow—not even the powers of hell can separate us from God’s love. No power in the sky above or in the earth below—indeed, nothing in all creation will ever be able to separate us from the love of God that is revealed in Christ Jesus our Lord."

I guess those verses are pretty clear. Nothing can separate us from Christ's love. It's easy to say it, harder to believe it and live like you believe if but my hope for myself, and for anyone else feeling the same way I've felt, is that God would continually bring these verses to mind when I need them because to really be able to trust Him I have to truly believe He loves me and is faithful.

2 Timothy 2:13
"If we are unfaithful, He remains faithful, for He cannot deny who He is."

April.

2010-04-21T16:56:00.000-07:00

I thought about taking some pictures of my chipmunk cheeks that I acquired after getting my wisdom teeth out but figured these would be more enjoyable!

Emeric fixing his bike

Sunday night bon fire

This is at the beginning of the marshmallow roasting.
It was much blacker and full of dirt by the time he was done with it.

We met at a waterpark with my sisters kids and my half sisters Jessica, Miranda and her daughter Elli. The kids had a lot of fun!

Faces of Mitochondrial Disease

2010-04-13T10:35:00.000-07:00

I shared this on Facebook but I thought I'd share it here too as well. Please take the 8 minutes to watch this video. I "know" some of these kids through meeting their moms on an online support group for parents of kids with Mitochondrial Disease. Is it a sad video? Yes. But it's the reality of the disease and unless people understand what it is they will not support the research.

I hate this disease. It's what causes Emeric to lie on the couch all day long some days. It's what keeps him on seizure medications, makes him unable or unwilling to eat enough, gives him 10 words at nearly 4 years old, and makes him so hot that he can't even enjoy a hot day outside!

A spring walk...

2010-04-07T12:44:00.000-07:00

Missing in Action

2010-04-05T14:17:00.000-07:00

Between being busy with all of Emeric's stuff, not having anything interesting to say, and a few other reasons I haven't been blogging lately. My "Feed the Freezer" event hasn't happened yet and will likely continue to be put off for a bit. I did just make 7 lbs of sloppy joe meat so I guess I'm not totally off board. :)

As for now we've been enjoying nice weather, Easter, and a break from school!

Just in case...

2010-03-26T10:40:00.001-07:00

Just in case anyone that reads here doesn't check Facebook or Emeric's caringbridge I thought I'd link over there so you know what's going on! :)

http://www.caringbridge.org/visit/emericswiers

Conversations with Kaydence

2010-03-16T12:28:00.000-07:00

Kaydence: Mom, I don't think Kylie's prince is real.

Me: Her prince?

Kaydence: Yeah, the prince at her school.

Me: ????

Kaydence: The prince at her school!!!

Me: Ohhhh, you mean the prinicipal?

Kaydence: Yeah, the principal. I don't think he's real because he doesn't wear a crown. And princes are supposed to wear crowns.

Houston

2010-03-12T07:37:00.000-08:00

My mom, Emeric and I left for Houston Sunday morning. Our flight was delayed so we sat in the Fargo airport for quite a while before heading out. We made it into Houston around 4:30pm and went to pick up our rental car. I saw a really nice Hybrid that looked fun to try and I figured it would get awesome gas mileage so I put in the carseat, packed up our stuff and got in. Only one problem... we couldn't figure out how to turn it on. Finally I realized there's no key, just a push button to start the car. So I get the car started and get out to shut the trunk and it shuts off. I start it again, it shuts off again. We finally decide we have no idea how to run a hybrid car and unpack all of our stuff and choose a normal car! It was still nice, a 2010 with 600 some miles on it!

Our hotel was 25 minutes from the airport and we ended up pulling in there about 1.5 hours later so I figured we made pretty good time! ;) We ordered pizza, unpacked and TRIED to go to sleep. The problem was there was someone above us that walked, and walked, and walked until 2am and the floor was so noisy we couldn't sleep! I'd turned the stove fan on for some noise but it didn't help.

The next morning we woke up to rain! We decided to go to the Aquarium since it was mostly indoors. After getting lost AGAIN we finally found our way. (Houston is the 4th largest city in the US so we had a good excuse!) Once we got there we realized a lot of the stuff was outside(rides and such) so we didn't end up spending much time there. After leaving the aquarium we headed over to the mall(and didn't get lost! Yippee!) and ate dinner at the Rainforest Cafe. I wanted to let Emeric get some little creatures to take with and there was a special to pick out 15 of them so I was sorting through and trying to find 15 different tiny animals. Everytime I'd put the snake in he'd whip it out and say, "Yuck!". Finally I hid it at the bottom so he didn't see it and made our way out with 15! He still whips the snake out when he sees it!

Tuesday morning we decided to leave very early to make it to Emeric's appt. because we'd heard that rush hour can be pretty bad. We left at 6am for an 8:15am appt. and ended up getting there at 6:20am! Oh well, better early than late!

After the appt(which I'll probably post about on Emeric's caringbridge) it was really nice out so we decided to go to the zoo! We saw lots of animals but Emeric was pretty tired. We left to eat lunch and then decided since it was so nice out we'd head to Galveston and see the ocean. My mom hadn't seen the ocean in almost 30 years! It was beautiful there! Lots of palm trees and most importantly SUN! We picked out a lot of shells for the kids and Emeric had a blast. He rolled around in the sand and was filthy when we had to put him back in the car!

Wednesday morning we left for the airport and amazingly did NOT get lost! Whew! It was a long day, we had a pretty long layover in Minneapolis and Emeric was tired and ready to be home.

Overall he did really well on the plane, slept good, and was in a good mood nearly all of the trip! I wasn't excited to see snow again but thankfully a lot of it had melted while we were gone!

Don't let it fool you

2010-03-05T17:13:00.000-08:00

Because this psuedo-innocence quickly turns into...

This

And last but not least, this.

(Yes he's naked. Yes, I disinfected the counter.)

Note: Reprimanding occured after each picture was taken.

I've jumped on the bandwagon

2010-03-03T18:22:00.000-08:00

The "Feed the Freezer" bandwagon, that is.

Feeding the freezer essentially means spending an entire day cooking a months worth(or however many meals you are willing to make and can fit in your freezer) of food. Does an entire day of cooking sound appealing to me? Well, no. But neither do 30 separate days of cooking. In fact...

I hate cooking.

I guess that isn't entirely true. There are a few days here and there where I enjoy cooking but for the most part I find it too time consuming & messy. Besides... all that work for 10-15 minutes of enjoyment. Sigh.

Not everything freezes well and I wanted to play it safe so I stuck to meals I know freeze well and my kids will actually eat. If I enjoy this whole 'Feed the Freezer' business I might experiment more later but for now... lots of hamburger and chicken! You'll also notice we eat a lot of Mexican food!

I only included 15 meals because I'm sure there will be nights we'll get a pizza, eat cereal, send the kids to their rooms without supper(kidding), etc...

Anyway... "The Plan"

1. Meatballs
2. Tater Tot Hotdish
3. Cheeseburger Pie
4. Spaghetti sauce
5. Sloppy Joe meat
6. Lasagna
7. Nachos
8. Chicken Enchiladas
9. Taco Pie
10. Egg Bake
11. Tacos
12. Chicken Tetrazzini
13. Chicken and Rice Soup
14. Cheesy Ham Chowder
15. Spicy chicken

I'll be in Houston next week but I hope to cook that next Monday and I'll definitely be chronicling(how the heck do you spell that word?) the process!

Tired out.

2010-03-02T12:11:00.000-08:00

Fatigue is a pretty big part of Mitochondrial Disease. Afterall it is a disorder of energy metabolism. Some days the fatigue isn't hugely obvious and other days it is. Like today... Emeric woke up, played with some trucks, and then took a bath. He started crying in the bathtub and could barely keep his eyes open. I got him dressed, sat him down with his blanket and he looked exhausted. Thankfully if he rests for a while he'll usually be ok to get up and go play again for a while but today I just put him down for a nap because he was so tired.

Other days he's really hyperactive. It may be surprising but that's usually just a mask for fatigue too. You know how it is, you keep your kids up too late and they start bouncing off the walls!

Tired or not he's still pretty cute!

And I couldn't resist posting a video. Emeric was being kind of a stinker but with enough funny faces I finally got him to crack a smile!

Having fun indoors!

2010-02-25T12:21:00.000-08:00

By February we are longing for summer and ready to get outside but... it's cold, so the kids have been staying busy with...

This. Can you guess what it is? :)

And this:

And these:

And Emeric always stays busy eating 6 bowls of Rice Krispies a day:

And as I promised, pictures of Emeric's new bike!

Another thing that the kids have been having fun with!

No title. *

2010-02-18T12:28:00.000-08:00

*I'm putting these here for anyone that doesn't check facebook but I'm realizing... who doesn't check facebook? :)

What are your summer plans?

2010-02-16T13:29:00.000-08:00

As I sit inside looking out at the sun that gives the illusion of warmth I'm thinking about summer. I have big plans for summer & it really cannot come soon enough!

I've had a garden the last 3 years but every year something happens to ruin at least 1/2 of it! The first year I didn't take care of it at all and the weeds at the garden. The second year I didn't take care of it either but the 30 days of straight rain was mostly at fault. Last year the frost in JUNE killed off a bunch of plants! Oh and I didn't ever weed it.

I still don't plan on weeding it this year. There really seems no use. I always get way more than I need and I really am convinced that those previous natural disasters were what killed off some of the veggies. If it were my lack of weeding than why did some vegetables do fine? Exactly.

Anyway, my big plans are to plant a lot more variety and can a lot more this year. I've canned green beans and frozen corn in the past but I want to do more. So, that's my plan and I'm stickin' to it!
----------------------------------------------------------------------------------

Other big plans are to do some more landscaping this year. We need to finish planting grass in our back yard and redo some mulching around the house. I'm also hoping that my perennials decide to come up this year. Some of them did but I uprooted them and placed them in a different bed last year and I'm thinking they went into shock and that's why they didn't come up. I don't know, I'm not a big gardening nerd so I don't know much about all this stuff but I'm pretty sure I heard that can happen sometimes...

Plan #3: Camping! Jake has quite a bit of vacation this year and we're hoping to use some of that to camp! Now that the kids are a bit older it's only A LOT of work instead of a TON of work. :) Nah, it's not too bad!

Plan #4: Convince Kaydence she will not die swimming, riding a bike, being out of my sight, pumping herself on the swing, or doing anything else without my constant prodding and supervision.

Plan #5: Farmer's Market! There's a nice farmers market that opened last year just a few miles from us and I plan on taking advantage of it more this summer!

Plan #6: Sitting inside and complaining about how hot it is outside! haha

And life goes on...

2010-02-07T19:46:00.000-08:00

We're finally getting over nearly two weeks of colds here! Which is good because with sick kids comes A LOT of whining, clinging, etc... I can't really blame them though, Kaydence had a pretty bad ear infection in both ears and Emeric's cough and runny nose made him equally as miserable. Thankfully he got through it ok although there are always subtle changes(at least for a while) with any illness. He did have some trouble walking a couple times and I see his skin being hot and flushed off and on(always a sign his body is stressed) but those things are pretty minor so I'm not complaining.

No huge plans this week really... We've got an IEP meeting on Thursday to discuss plans for this fall already and to go over the goals we set last May. Some Emeric has met and others he has not so it's time to make changes and update everything. He's doing really well in school and I can tell he's making progress in a lot of different areas. I'm going to push for him to be in the 3 day a week class next year even though it's typically set up for kids who will be going into kindergarten that fall. While Emeric will be 5 it's pretty unlikely that he'll go to kindergarten that year. Still I think it would be good for him to have a bit more frequent therapy and this class has both "typical" kids and kids on IEP's which will be a nice change too!

Well, I'm off to bed! We had a party for the Superbowl tonight and I'm pooped! I wore my Vikings jersey and wrapped myself in my Vikings blanket while watching! :) I don't know, I guess I just can't give up the thought that it should've been us in the Superbowl!! LOL

Child vs. plant. Again.

2010-01-26T15:05:00.001-08:00

Plant loses life. Mom loses patience.

I won't make you guess which child was responsible.

Boys and their toys my plants.

2010-01-25T06:38:00.000-08:00

Maybe it's time for the therapists to stop focusing on pretend play with Emeric... I think he's got it down.

A fun weekend!

2010-01-21T07:34:00.000-08:00

We live in the middle of nowhere. A good way to judge how far out in the middle of nowhere you actually live is to determine how far away the nearest Target is. For us that's over an hour.

So, when I remembered that there was a hotel/water park only 30 minutes from us that we'd never been to I decided we should go! I called Jake at 1:00pm and by 2:30 I had picked Kylie up to school and headed to the hotel. Jake's used to my "fly by the seat of your pants" view on life. And in my defense I found an awesome deal online that was only available on Friday's in January. :)

Waiting for dad to bring pizza...

Taking advantage of being able to drink pop!

(Don't worry, I took it away after about 2 drinks)

Lazy River

Kylie and dad coming down the waterslide

Making sure I see that she's eating another cookie!

The kids had a lot of fun and are already asking to go back!

Oh and here's a video of Emeric saying all the words he knows!! :)

http://s2.photobucket.com/albums/y27/nicolejeansw/?action=view&current=MVI_1395.flv

Kylie doing her homework

Kylie pretending to be annoyed with me for taking her picture

"Mom, just let me eat my pizza in peace!"

And every once in a while I look outside and actually appreciate winter and it's beauty!

Five Steps to Real Change in the New Year

2010-01-03T13:48:00.000-08:00

A fresh look at New Year's resolutions!

http://www.incourage.me/2010/01/five-steps-to-real-change-in-the-new-year-.html

2009... Looking back

2009-12-31T08:56:00.000-08:00

What happened this year?

1. Jake got a new job working as a fuel truck driver in April. This was a VERY welcome change as we did not feel like truck driving was good for our family. Of course you do what you have to do at the time but we were very grateful when a job opportunity came up and Jake was hired! He now works a set amount of hours a week, we know when he's getting paid, and he's home every night for dinner. I couldn't ask for anything better!

2. I counseled at our church's summer camp in June for a week! It was the first time I had ever left my kids that long and surprisingly I did really well! I made a point to be very present at camp and to try to just enjoy myself. I knew the week wouldn't be any fun for me if I focused on missing my kids so I didn't and it was a great week! I stretched myself in a lot of ways and I enjoyed all the girls in my cabin as well as all the other kids at camp! I heard so many stories from the campers that were heartbreaking. Stories of abuse, drugs, alcohol, pornography, broken families, etc... Teenagers continue to be faced with all of these things at a much higher rate than I think even I was 10 years ago! And definitely at a much younger age!

3. I directed VBS! This is something I would never have thought I wanted to do or could do, as I'm the epitome of disorganized, but i did it! I had help from my great friend Karri and another lady at our church and together we pulled it off! It was a great week and I really enjoyed it!

4. Kylie turned 6, Emeric turned 3, Kaydence turned 5!

5. Kylie started 1st grade at public school. Over the summer I really struggled a lot with whether or not to homeschool Kylie again. In the end we decided to send her and she's doing great!

6. We made 2 trips to Houston, TX to see Emeric's Mitochondrial Disease specialist. He was officially diagnosed with a Primary Mitochondrial Disease. He was started on a new medication for seizures, he was diagnosed with migraines, and started school! He goes 2 days a week for 2 hours to a special ed class and receives all of his therapy right at school! He does still receive private OT and private speech therapy as well which his nurse takes him to on Monday's.

7. I set a goal at the beginning of the year to start exercising and I ended up running my first 1/2 marathon(13.1 miles!) this fall! It was such an accomplishment and I plan on running another one in 2010!

8. We finished our entire basement so that Jake's sister(who is going to college nearby to finish college) and her husband could live in it for 2 years!

9. I went to a Beth Moore conference!

I must live a pretty boring life to only have 9 things to list! Ha ha!

Oh well, I guess it was 2009. Maybe next year I'll have 10 things!

Wordless Wednesday: Longing for summer already!

2009-12-30T07:36:00.001-08:00

Update on Emeric...

2009-12-28T07:36:00.000-08:00

Again I know some of you follow Emeric's caringbridge but some don't and I haven't written about how Emeric's health has been in a while. At least I don't remember doing so...???

Emeric has been doing well. He was sick the weekend before Christmas throwing up(we all were!) and then ended up with a pretty bad migraine the next day. He laid on the chair all day moaning and crying any time he moved. It lasted for about 12 hours and then he went to bed and woke up much better the next day. He still was unable to walk and even had a hard time crawling but throughout the day and the next day he was back to himself! I wish I had a good explanation the cycle of sickness = migraine = not walking. It's strange because he really wasn't that sick but illness always affects him in weird ways!

Seizure wise he has been doing very well! We haven't seen a seizure in about a month which is great because we lowered his meds and expected to see some. It's great if we can keep the meds lower! They won't continue to lower them even though we're not seeing seizures because his last EEG showed a lot of activity which means that if he were not on the meds he would likely be having a lot of seizures. They want to "clean up" the EEG, meaning they want the meds to make all of that activity go away too because with all that noise in the brain it's harder to develop normally.

And speaking of development... this is always a sore spot for me. It's a hard balance because on one hand he's not that behind and on the other hand he is. Make sense? I mean, there are always kids I can compare Emeric to that are much more delayed and that helps me stay positive and be thankful that he's still progressing and doing well! However, there's also the kids his age that we see frequently that remind me of how behind he still is, so I don't want to be a downer, I don't want to sound ungrateful or feel sorry for myself but it's hard sometimes. Hard to see all the kids his age singing in the Christmas program, hard to see all the kids memorizing verses and getting patches on their vests at Awana, hard to have little kids point out the fact that Emeric doesn't talk.

The not talking is probably the hardest thing developmentally for me. Emeric has learned a few new words but with that he loses the ones he had. He is still considered non-verbal. I can tell that he wants to talk but can't. I know this because I will ask him to say a word and he will try to think of a sign for it. He wants to show us that he can say it but, he can't. He will repeat some words but you typically have to work with him for a long time before it sticks and even then he tends not to use it in the right context. For example, I taught him to say "papa" because it seemed much easier than grandpa. So I will say now, "say papa" and he will and I'll clap and be all excited. But, then I can say, "Emeric, say Kylie" and he'll smile and say, "papa" because he knows it will get a good laugh. So he's never used papa in reference to grandpa, he just uses it if he wants to be cute or if we ask him to repeat it. This is the way it is with most of his language. He does have a few words he uses appropriately like "nani" which is his blanket and he says mom and dad.

It's been really hard to know how to approach the language stuff. Do we keep waiting and hoping he'll just start talking one day? Do we teach him sign language? Do we use a communication device? Our fear has always been, well if we teach him sign language what if he then never talks? Well, at this point what if he never talks AND we don't teach him sign language? Then he has no way of communicating. He's picked up some sign language but even that has been pretty hard for him to really grasp so it's been a slow process. He can now say please, help, thank you and more in sign language.

He was 3 in August. Everyone kept assuming(including us) that one day he'd just start talking. And sure that might still be true. But his language has not ever developed typically like most kids. It isn't like he's just delayed, his language has always been weird... Meaning a lot of the first sounds he was making weren't typical first sounds and he's not continually building his vocabulary which he should be. He loses words before he'll gain new ones. It's like his brain can only hold so much or process so much, I'm not sure. I wish someone had the answer!

So we've started using a communication device, we've started learning more sign language, and for now I keep holding out hope that Emeric will eventually talk, it's just not going to be when we want it to be! The speech language pathologist we see has said she does think Emeric will talk but because he has a word finding disorder(you know when you want to say something and just can't think of what it is?) that he will likely always have some trouble with that. It's just hard to say how much and not dwelling on that is going to be my biggest obstacle to overcome!

I'll have to get a video for you all to watch, Emeric is quite the clown and he knows it! He enjoys making people laugh and likes to act goofy for any audience! :)

Kudos to you if you made it through this ridiculously long update!

Kylie's letter to Santa

2009-12-24T19:21:00.000-08:00

Thistlehair, the Christmas bear

2009-12-24T11:53:00.000-08:00

It's funny what you remember about Christmas as a kid. I remember my mom had this Alabama Christmas tape and everytime I hear the songs on the radio it reminds me of growing up. I just heard one of the songs today, "Thistlehair, the Christmas bear" and it brought back a memory of driving in our little yellow car back from the movie rental store & getting Dominoes Pizza.

We also spent the night at my grandma and grandpa's house and my grandpa would get up on the roof every year and shake the Christmas bells, pretending to be Santa. I used to always get scared when I was real young and he thought it was funny. ;) I remember finding out in 2nd grade that there was no Santa and crying to my mom about it who told me not to tell my younger sister. I still remember the girl that told me there was no Santa!

So far we don't really have any major traditions with our kids and each year I think about what traditions we could start. We have made a gingerbread house the last few years and opened stockings Christmas Eve with presents on Christmas day. I guess those are some traditions but it seems like there could be more meaningful ones!

We're stuck at home because of the winter storm. The girls are watching, "Alvin and the chipmunks" and then Jake is going to take them outside sledding. Emeric might go out for a bit but he can't stand up with snowpants and boots on so it's a lot of work having him out for too long!

Well, I hope everyone has a Merry Christmas!!

My thought of the day

2009-12-18T10:51:00.000-08:00

Is it harder to be who you are or to stop being who you aren't?

Is it true?

2009-12-15T11:11:00.000-08:00

If parents did not have rules about certain things do you think children would limit themselves on their own?

For example... If there were no rule about how much a child could watch tv do you think they would watch tv all day long, never turning it off, or would they tire of it eventually and shut it off themselves?

If a child was not forced to eat "good" food and instead could eat what they wanted, whenever they wanted it, would they eventually choose something healthy?

If there was no set bedtime would they eventually get in bed at a decent hour to get enough sleep?

Obviously for a while I think all children would take advantage of these things and probably sit around all day eating candy and watching tv but I'm wondering if this would continue? As a parent I think it's easy to assume that without all of these guidelines/rules that our children would always choose the opposite of what we'd want for them. But would they?

What if that didn't happen? What if kids could regulate these things(and others) pretty well on their own? Would it teach them more responsibility? Would they be more aware of how THEIR choices affecting them and others? I'm not suggesting children don't need some structure or some guidelines just contemplating whether it could be much less...???

I don't really know the answer, that's why I'm asking! :)

I do have an idea for an experiment floating around in my head but I'd love to hear some opinions on this first!

What's going on in our household...

2009-12-09T11:44:00.000-08:00

Now that Kylie is in school I seem to have far less pictures of her... I also seem to be getting blurry pictures these days... hmmm.... maybe I should clean my lense?

Emeric and Kaydence on their way outside to play in the snow. This was before it got so ridiculously cold that you couldn't even breathe in outside or your lungs would freeze. He doesn't look thrilled but he was, even though he's wearing his sisters mittens.

Kaydence being, well Kaydence.

Can you carry around someone that only weighs 10 lbs less than you? I don't think I can!

Awww....

Silly face...

Emeric is apparently trying to show off his plastic Snow White shoe...

Eewww...

Kaydence on her 5th birthday!

Not a great week!

2009-12-08T07:13:00.000-08:00

It always seem like things tend to happen at the most inopportune times(like right before Christmas!). First our dryer breaks down and we have to pay to fix it. Then our floor heat isn't working and we have to pay someone to come out and look at it. Then Jake gets an infected tooth and without dental insurance we'll pay quite a bit to fix that.

Now today my phone stopped working and I'm going to have to call someone to come fix it!!!

Seriously? This has all happened within less than a week's time. What will go wrong next!?!?

Wordless Wednesday

2009-12-02T06:11:00.000-08:00

Not Me! Monday

2009-11-23T10:05:00.000-08:00

This week I did not almost give Kaydence Emeric's seizure medication because she was sitting close by and I wasn't paying attention.

I did not tear up when Kylie's teacher told me she was one of the most well behaved kids in her class.

I also did not become embarrassed when my father in law got up and church and said he was thankful for his wife because she brings him his underwear. (He recently had surgery and can't climb up the stairs to his room well.)

I am not letting Emeric's worsening ataxia and extreme tiredness worry me. Nope, not in the least.

I do not find it funny that Emeric thinks he should cross his arms and say, "humpf" everytime I tell him no.

Check out other Not Me! Monday stories here:

http://www.mycharmingkids.net

Not Me! Monday

2009-11-16T14:31:00.000-08:00

Upon hearing that Kylie had been kissed(on her coat, lol) by two boys at school who apparently have a "crush" on her I did not consider calling her teacher the next morning to let her know Kylie would never be returning.

I do not bite my nails and even if I did I definitely would not bite off my fingernail and then use the small piece to get something out between my teeth because I was too lazy to get up and get a toothpick.

I did not put Emeric in his bed(which is enclosed) with a bunch of toys so I could make dinner in peace and then leave him in there while I checked email, facebook, etc... because he was happily playing!

When walking out the door one morning and spotting a dead mouse laying on the path I did not actually feel a bit sorry for it and wondered how it died! What the heck? I am terrified of mice!

I do not need to stop eating frozen pizza 3x a week because I am not going to slowly gain back those measly 5 lbs I lost running this summer!

I did not consider putting up my Christmas tree today BEFORE Thanksgiving!!

Visit http://www.mycharmingkids.net/ to see what other people have not been doing!

Peek a boo and a rare smile for the camera!

2009-11-13T09:59:00.000-08:00

Giveaway winner!

2009-11-12T12:07:00.000-08:00

Random.org picked ...

#5, Kelley!

Congrats! :)

Giveaway!!

2009-11-10T10:08:00.000-08:00

Since it's sunny outside I'm in a mood to give something away!

I bought roughly 10 bottles of this lotion a while back, on sale since it was going out of stock. It's my favorite Victoria's Secret scent, Pretty in Pink.

So, just leave a comment telling me what your favorite lotion scent is and I'll pick a winner randomly on Thursday, November 12th who will receive one bottle of Victoria's Secret Pretty In Pink Lotion!

Epilepsy Awareness

2009-11-09T18:49:00.001-08:00

As I said before, many people tend to think of a tonic clonic seizure as the only type of seizure. This is the first video I have of Emeric having seizures. He was 9 months old and I was video taping him and just happened to catch it on video. In showing it to 2 different doctors neither of them believed it was a seizure but a video EEG proved they were seizures. Just further proof that seizures that aren't "typical" are sometimes very easy to miss.

I have a few more videos of Emeric's seizures and there are a lot of videos on you tube that show different types of seizures as well.

*Sorry it's sideways! :)

Make an on-line slideshow at www.OneTrueMedia.com

Pray for Gavin's family

2009-11-07T18:52:00.000-08:00

Please take the time to pray for the Owen's family whose son Gavin is nearing the end of his battle with Mitochondrial Disease.

Visit their site here.

Therefore we do not lose heart.

Though outwardly we are wasting away, yet inwardly we are being renewed day by day.

For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.

So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.

2 Corinthians 4:16-18

Answers never come easily

2009-11-06T06:15:00.000-08:00

When Emeric's Epileptologist said he thought the coordination/balance issues could be migraines I thought there was no way. He does seem to be hurting during these "episodes" but usually points to his legs or grabs at them, not his head. But, then last night he was having a lot of difficult walking and started throwing up. I figured he was getting sick because it's been going around. He threw a couple times and started retching for a bit and then fell asleep and that was the end of it. Now I'm wondering if the doctor is right and he may be having migraines. Vomiting is common, especially in children, and he seems fine today.... It is early so I guess maybe it's too soon to tell. I would hate for him to be having migraines but at least if that were what it is it might be more easily treatable than something else.

We also got the official results of Emeric's last EEG and it has changed since the previous one. Good thing is he had no seizures but he has diffuse slowing for his age and disorganized, high voltage discharges. In simple terms, it's abnormal. It's hard to explain but essentially it's just kind of a crappy EEG. When I called to talk to the nurse she just kept saying that the doctor pays more attention to the child than to what the EEG shows and Emeric is doing better than you'd think he should be based on what his EEG shows.

Emeric fits closely with something called Lennox Gaustaut Syndrome. You can read more about it here. He has not been classified as having it simply because his seizures are not as frequent or severe as typically seen in LGS but the doctor said he is treating him the same way he would treat a kid with LGS. He has some of the seizure types seen in LGS, his EEG fits closely with LGS, and he is developmentally delayed.

I don't mean for all of this to sound so negative but it is what it is. I know people would rather read about all the positive stuff and I would rather post about the positive stuff and I hope that when things are going well that I remember to talk about that too but for now this is what's going on.

I emailed a video of his walking to his doctor in Houston in hopes that maybe she'd have some ideas of what is going on. I'd love to hear from her today but you know how doctors are! ;)

Mattie Stepanek

2009-11-05T08:00:00.000-08:00

My grandma called me the other day and asked if I saw the story of Mattie Stepanek on Good Morning America. I had remembered vaguely hearing about him but did not know his story.

Mattie Stepanek died at the age of 13 from a rare form of muscular dystrophy, dysautonomic mitochondrial myopathy. Mitochondrial diseases fall under the umbrella of muscular dystrophies. His mother lost 3 of her children and then went on to develop the adult onset form of the disease and now spends her days in a wheelchair and on a ventilator. She did not know when she had children that she would pass this disease on to every one of them. Her story & Mattie's are incredibly inspiring. This little boy touched more lives in 13 years than you can even imagine! He had books on the New York times bestseller list and wrote a book with Jimmie Carter. He spoke about peace and hope.

When the moon sets

Over your shoulder

As the sun rises

Bright towards your face,

What's in the middle?

Your life is.

Filled with choices

For each moment, each place.

We live between the Past and the future,

In the moment of our

Here, now, today.

Can we cope with the

Daily life stresses?

If we humbly accept.

We must pray.

December, 2001

Used with permission from Hope Through Heartsongs, Hyperion, 2002

His mother recently did an interview for GMA and you can watch the two videos here. They really give you a good idea about Mattie's outlook on life and are incredibly inspiring:

http://www.myfoxdc.com/dpp/news/local/mattie-stepanek-mother-book-release-110309

On September 11th, 2001 Mattie wrote this poem:

We need to stop.

Just stop.

Stop for a moment.

Before anybody

Says or does anything.

That may hurt anyone else.

We need to be silent.

Just silent.

Silent for a moment.

Before we forever lose

The blessing of songs

That grow in our hearts.

We need to notice.

Just notice.

Notice for a moment.

Before the future slips away

Into ashes and dust of humility.

Stop, be silent, and notice.

In so many ways, we are the same.

Our differences are unique treasures.

We have, we are, a mosaic of gifts

To nurture, to offer, to accept.

We need to be.

Just be.

Be for a moment.

Kind and gentle, innocent and trusting,

Like children and lambs,

Never judging or vengeful

Like the judging and vengeful.

And now, let us pray,

Differently, yet together,

Before there is no earth, no life,

No chance for peace.

September 11, 2001

"Hope is real. Hope is an attitude and attitude is a choice." Mattie Stepanek

Epilepsy Through The Ages

2009-11-04T11:34:00.001-08:00

Understanding Epilepsy (Epilepsy #1)

2009-11-02T10:45:00.001-08:00

This is the 1st of a series of videos that I think are very informative in terms of understanding Epilepsy and seizures. I hope you'll take the time to watch!

Epilepsy Awareness Month

2009-11-01T16:39:00.000-08:00

November is Epilepsy Awareness month & after a conversation I overheard when we were at the Mall of America last weekend I realized how much people still do not understand about Epilepsy so I have at least a few posts planned in hopes of educating people about Epilepsy!

Emeric, Kaydence and I(Jake and Kylie were on another ride) were standing in line for a Ghostbusters ride and there was a sign on the door that said, "Warning, strobe lights are used on this ride" and I overheard two women in front of me talking and the conversation went like this:

Person 1: I wonder why they put a warning about strobe lights being used?

Person 2: Oh, it's because people with Epilepsy have seizures if they look at flashing lights. You can't even use a flash around a person with Epilepsy or they'll have a seizure. They'll start going like this(and then she demonstrates someone convulsing).

They continued their conversation for a couple minutes while the lady told her(wrongly) that all people with Epilepsy will have a convulsive seizure if they see any flashing lights.

I thought for a second about tapping her on the shoulder and telling her that only people with photosensitive Epilepsy have a seizure when they see flashing lights but I figured it wasn't really the place. LOL These women were at least in their 40's though and it made me realize how many people really don't know much about Epilepsy.

A lot of people that think of seizures picture a tonic clonic seizure where the person is stiff and convulsing but that actually is not the most common type of seizure.

So... with that said I hope that some of you will be willing to ask questions and come back to learn more about Epilepsy!

Telemarketers

2009-10-29T06:16:00.000-07:00

Telemarketers think they're so sneaky. First one called this morning and asked if Jake was home. I said no and asked who was calling. They told me and I said they can call back tonight. Two minutes later the same number pops up on my caller ID! I ask who is calling and they won't tell me. They said it's a "personal business call". Yeah, ok. I say, "You JUST called here and I told you to call back tonight!" and they hung up!

I thought about calling THEIR number back!!

What do you do when telemarketers call? Are you nice and stay on the phone? Do you hang up? Do you tell them a joke? What do you do?

Do you vaccinate?

2009-10-28T09:44:00.000-07:00

With all the H1N1 craze going around it seems like all people are talking about are vaccines. So, do you vaccinate and why or why not?

Kylie was fully vaccinated up until 18 months and has not received any boosters. Kaydence was vaccinated until 12 months but did not receive her MMR. Emeric had his 2 month shots and has had no more.

I wish I'd been more informed when my girls were young and I would not have vaccinated them. When Emeric was born I felt much more informed and decided I was not going to vaccinate him and then my doctor pressured me into having him vaccinated. Two days later he had his first seizure. Now sure it may seem coincidental but I can, off the top of my head, think of at least 10 children whose seizures were triggered by vaccines. A lot of the ingredients in the vaccines including aluminum and formaldehyde(among others) are known neuro toxins. It's unclear whether the vaccines themselves triggered Emeric's seizures or fever caused from the vaccines.
Whatever the cause, none of them will ever receive another vaccine.

So, with that said I'd love to hear your stories and opinions!

Thoughts of the day

2009-10-21T10:18:00.000-07:00

Unimportant thought of the day: We're having a Halloween party next Friday night at our house. Thankfully since I never dust I've got plenty of cobwebs in the corners to make it look like I've spent a lot of time decorating! I'm so resourceful!

Less random, more thought out thought of the day: I am really, really tired of poop. I'm tired of changing diapers, tired of scraping poop off with a knife into a container to store in my refrigerator, tired of cleaning my carpet and washing ridiculous amounts of laundry. We are seeing the GI on Friday and I may very well corner her in her room until she gives me a solution to the problem.

Someone else's thouht of the day: Faith does not say, "I see this is good for me; therefore God must have sent it." Instead faith declares, "God sent it; therefore is must be good for me." Phillips Brooks

Funny thought of the day: The girls were playing a few weeks ago and Kylie told Kaydence where to find something. Kaydence replied, "Well duh!" to which Kylie said angrily, "You don't even know what duh means!!" and then she proceeded to walk into her room but quickly turned around and said, "And I don't either!"

Pet Peeves

2009-10-16T10:02:00.000-07:00

Pet Peeve- d. A pet peeve is a minor annoyance that an individual identifies as particularly annoying to them, to a greater degree than others may find it

My top 10:

1. Bad drivers- Especially the ones that are so oblivious to what's going on around them that they don't even realize they just cut you off, pulled out in front of you, or drove you into the nearest ditch.

2. Mispelled/Incorrectly used words- I cannot stand seeing words mispelled, specifically in newspapers or on ad signs. It's also a pet peeve of mine when people use the words their, they're and there in the wrong way.

3. Using the word "retard"- Unless you're talking about a mentally retarded person I can't stand hearing it used as a slang word in replace of saying someone is stupid, dumb, etc.

4. When a person makes a sucking noise with a straw & the cup is empty

5. Text-messaging someone while in a conversation with someone else

6. Using the word "supposebly" instead of "supposedly"

7. 97% of the people that shop at Wal-mart

8. Listening to a parent say, "I'm going to count to 3 and then we're leaving" and instead count to 10 and then stay anyway.

9. Being late

10. Not using a car seat!

Those are some of mine, what are YOUR pet peeves?

Tide Stain Release

2009-10-14T11:19:00.000-07:00

I have always used either Purex or Baking soda and Vinegar in my wash. Recently my cloth diapers started stinking and someone suggested washing them with Tide. I hadn't ever bought Tide before because it's so expensive and I figured it really couldn't be any better than the cheaper detergents. Wrong. Ok, not wrong about the so expensive part, that part is true, but I really did find that Tide did a better job of cleaning my clothes.

That's not to say I'm going to start buying Tide on a regular basis because Purex is a lot cheaper but when I picked up the Tide I also picked up some Tide Stain Release and I LOVE it! I pour just a tiny capful in my laundry and it really helps. Plus it smells good! I've rubbed it right on stains and then soaked them and that stuff has gotten out more stains than anything else I've tried.

So, there's my advertising for today! Go buy some Tide Stain Release and then let me know what you think of it!

What cleaning products do you use?

2009-10-12T13:37:00.000-07:00

For laundry?

For cleaning floors?

For cleaning bathrooms?

"Let us rejoice and be glad in it" Alternately titled: I'm pooped.

2009-10-09T07:16:00.000-07:00

Can I just say that unless my day gets better than it has been for the last 2 hours I will most certainly not be rejoicing.

6:30am-alarm clock goes off, I get up to get Kylie ready for school and Emeric is screaming in his bed

6:31am-I get Emeric up and he STINKS

6:35am- I get Kylie out of bed to get her ready for school

6:37am- I change Emeric and find a plastic spoon so I can scoop poop out of his diaper and into a plastic container that I'm required to keep in my refrigerator. Yum.

7:00am- I point to yet another box of cereal that Emeric wants one minute and not the next

7:17am-I lay Emeric on the chair with his blanket because he looks like he might fall asleep and I walk Kylie out to the end of our driveway to put her on the bus

7:20am-I walk up to the door to come back in the house and the door is locked. I contemplate coming in through the basement but don't want to wake our "rentors" so I begrudgingly knock on Kaydence's window to try to wake her up to come and unlock the door.

7:22am-I continue knocking and finally hear Kaydence start coughing which means she's hopefully waking up. I also realize if she's coughing this means a nebulizer treatment or two are in our future.

7:23am-Kaydence wakes up and unlocks the door

7:45am-Both of the kids eat breakfast

8:08am- I call the clinic to make Emeric's follow up appt. with the doctor

8:15am- I decide to scrub out the entire bathtub.

8:25am- Since the bathtub is freshly cleaned I figure the kids might as well take a bath now.

8:30am- I put the kids in the bathtub and fill it with bubbles.

8:35am- I hear a rumble. Bathtub water is quickly turning brown. Emeric is saying, "uh oh"

8:35 1/2am- I grab both kids out of the bathtub and wrap them in towels

8:40am- I ponder looking through the classifieds for a full time PAID job.

8:45am- After the water has drained and I have finally swooshed all of the poop down the drain I go get the bleach to clean the bathtub yet again.

8:55am- The bathtub is clean. I yell for the kids(still naked from previous short bath) and I walk out the bathroom door only to smell something horrid.

8:56am- Emeric has pooped AGAIN. This time all over the carpeting, toy trucks, stuffed animals, fabric bins, his hands, e.v.e.r.y.w.h.e.r.e.

8:58am-I put both kids back into the bathtub

8:59am- I walk out of the bathroom to get carpet cleaner, rags, Lysol and nose plugs and consider locking myself out of the house again.

9:00am- Clean up of disgusting, rancid smelling bedroom begins.

9:15am- Get kids out of bathtub, dress and diaper QUICKLY

9:25am- Sit down to blog about my enjoyable morning while the bleach continues to eat away at my now dry hands.

9:27am- Check my online bank account to see if there are enough funds to hire a babysitter for the day. Realize there are not. Decide instead to breath a sigh of relief that it's all over(for now) and get out my Walmart list to add: Bleach, Lysol, anti-diarrheal meds, chocolate, entire room full of new toys.

Vacation on a tight budget

2009-10-08T12:34:00.000-07:00

The trip we're taking doesn't seem like a vacation because we're going specifically for doctors appointments. Three of them to be exact. We'll be heading to Minneapolis in a few weeks and our entire family is actually going! It's been a long time since we've done anything together that involved staying overnight somewhere. We'll be gone for 5 days as Emeric's appt's are Thursday, Friday and Monday.

Thankfully because this is a trip for medical reasons we'll get some expenses reimbursed but I figured the kids aren't just going to want to sit in the hotel the entire time so I did some searching online to try to come up with cheap ideas of ways to have fun.

Here's my non exhaustive list:

1. The Mall of America. Obviously. There's Lego Land, the American Girl store and a bazillion other stores that are just fun to look at. Well, at least for the girls and I.

2. On Saturday mornings the MOA(Mall of America) theater has free movies for kids so I'm hoping Jake won't mind keeping Emeric at the hotel because he's impossible to watch a movie with(Emeric that is, not Jake. He's reasonable.) and I can take the girls.

3. Pumpkin patch! Free admission during the week and this should be a lot of fun for the kids!

4. Mall play place. Quite a few malls in the area have play places and the kids will enjoy playing and I will enjoy window shopping! :)

5. Again, the MOA. There's free trick or treating there on Friday night!!

6. Home Depot-I realize this is probably nothing exciting for those that have a local Home Depot but we don't and they have free crafts for kids on Saturdays.

7. Children's Museum-This isn't free or necessarily cheap but it's the one place we'd like to take the kids where there should be plenty to do.

8. The hotel pool! Enough said! :)

9. State capitol- They give free tours. No one but me will likely enjoy this but oh well. It's free and it's right across the road from Emeric's doctor.

10. Como Zoo-Free admission!!

So, I think we'll have plenty to keep us busy and while I'd love to be able to do all the other fun, expensive things, I'm just happy that we're actually all able to go on this trip.

Emeric will see Nephrology on Thursday, Opthalmalogy on Friday, and then Monday he has an EEG and then an appt. with the neurologist in the afternoon. In between all of that we can hopefully fit in some of these activities. Really as long as I am able to make a daily trip to various Target stores I don't care what else we do!

Some thoughts from Beth Moore...

2009-10-05T10:16:00.000-07:00

Prescription for Anxiety:

Philippians 4:6-7

"Do not be calm about anything, but in everything, by dwelling on it constantly and feeling picked on by God, with thoughts like 'and this is the thanks I get' present your aggravations to everyone you know but Him. And the acid in your stomach, which transcends all milk products, will cause you an ulcer, and the doctor bills will cause you a heart attack and you will lose your mind." Beth Moore

Prescription for peace:

"Do not worry about anything; instead pray about everything. Tell God what you need, and thank him for all he has done. If you do this, you will experience God's peace, which is far more wonderful than the human mind can understand. His peace will guard your hearts and minds as you live in Christ Jesus."

Living With Seizures conference

2009-10-03T19:52:00.001-07:00

We just got home from a 4 hour drive to our conference that the Epilepsy Foundation of Minnesota put on. It was very informative and while I can't say I really learned anything new necessarily it was still great to go and meet other families affected by epilepsy.

First we sat down before the morning session and the couple sitting at our table asked who was affected by epilepsy in our family. We told them our son and talked for a bit and then I asked them the same question and it was the woman who was affected. She talked about losing her driver's license because of having seizures while driving and not being able to work. She started crying and I knew it was going to be an emotional day.

The first session talked about all of the different medications and they rated them according to how they affect learning, green light, yellow light, red light. Of course Topamax is a red light drug meaning it affects cognition, speech, processing speed, etc... This is exactly why we're getting him off this drug!

The second session talked about success in school and then there was question an answer with a panel of both doctors and people whose children had epilepsy.

During lunch the speakers were a couple whose daughter died a year ago in August very unexpectedly from Epilepsy. There story was very inspiring but hard not being able to imagine how they must still be feeling.

The afternoon sessions talked some more about school and preparing your child for the future. I talked to one mom who asked if we'd tried the Ketogenic diet, one mom who talked about behavior issues, and a woman from the MN Dep't of Education about laws regarding special ed. We received a ton of handouts, videos, etc...

All in all it was a really good day and nice to meet other people who have children affected by epilepsy or who are affected themselves. At the same time it was hard to hear about so many children experiencing side effects to medication and having no other option but to be on medication. You always outweigh the benefit vs. the risk and for some children those side effects are better than multiple, daily seizures.

I'm very interested in the future of medication options and other treatment for Epilepsy. We know the likelyhood of Emeric outgrowing his seizures is very slim so the key would be minimizing medications and then minimizing the side effects of those medications.

I think I've said before but once you've failed 2-3 seizure drugs your chances of ever having full seizure control are less than 5%! Those are obviously not great odds and Emeric too has failed 3 so while it's hard to remain optimistic I can at least hope for minimal side effects with the meds he does need to be on.

I have a ton of links to find different information on Epilepsy and I'd encourage you to take a look if you haven't because while you may not be affected directly or indirectly by someone with Epilepsy it helps us all to learn because as we learned today... Knowledge is Power! :)

T minus 6 hours...

2009-10-02T19:24:00.000-07:00

Jake and I and his parents are leaving at 3:30am to head to Minneapolis for an all day "Living With Seizures" conference sponsored by the Mayo clinic. Should be informative if I can stay awake for it!

Our basement: from start to almost finish

2009-10-01T10:12:00.000-07:00

For some reason I can't find any pictures of the basement before the walls were up but these are close to the beginning.

Notice that you can see the seam in the carpet towards the right where the wall angles? That's because the carpet is a different shade! It shouldn't be like that and the guy that laid it said it the company should replace it but because it wasn't a small company but rather a large one where we purchased it it's unlikely they will replace it. They will do SOMETHING though, I can guarantee you! :)

It isn't totally finished. We still need doors, trim, and some other odds and ends but it's coming along!! When the bathroom and kitchen are finished I'll post pictures of them too! :)

The story of the frazzled housewife

2009-09-29T07:42:00.000-07:00

Once upon a time in a land far, far away lived a very frazzled housewife.

Oh how she longed to say...

To sit in silence eating

And drinking

But instead she was

the question is

Instead her day was filled with

and
and

So she began contemplating

how to teach her kids that

and realizing that

means that saying

will likely not be a reality for at least another 9 hours because for right now

The End.

I heart this boy

2009-09-28T13:32:00.000-07:00

Book Giveaway winner!

2009-09-28T07:43:00.000-07:00

I'm confident that my next giveaway will draw in more than 5 people! LOL

Oh well, that just makes the odds that much better for those that did enter! :)

Random Number Generator picked number.... 2! Number 2 was Erin! Congrats Erin!

I decided to just give away all 3 books so Erin can pick first and then the next two winners will get the two left.

And so the next two winners are...

#4 Heather

#5 Chare

So if you won, will you please send me an email? Thanks!!

Harvest and then some...

2009-09-25T05:27:00.001-07:00

For 3 years I've had a garden and for 3 years I've weeded it approximately once each year. Yet still I end up with more than our family even uses. Especially zuchinni. Oh zuchinni.... You have to marvel at its extraordinary growing capabilities.

Last week I decided to wander down to the garden. I hadn't been there in a while and I assumed I'd probably find a few ripe tomatoes to pick and roughly 47 zucchini. Little did I know that not only were there 47 ripe zucchini there were also about 15 ripe tomatoes, 10 onions, 135 ears of corn and 3 measly carrots. The same carrots that we'd thought we tilled under because they never grew. I suppose if my garden wasn't overtaken with weeds I may have noticed the carrots actually were coming up. Still we'd tilled them under so those things must be pretty hardy!

See those zucchini? There are more on the bottom, more on the vine, a few sitting on my porch, a few more I threw in the woods and well, you get the picture.

Corn.

Yuck.

Not "yuck" as in I hate corn but "yuck" as in this picture reminds me of a long, sticky mess.

After shucking(is that how you spell that?), blanching, cutting, mixing, and bagging the corn was finally done. Hallelujah.

And then there's this lone pumpkin. It looked like this a couple weeks ago...

(notice the weeds surrounding the pumpkin?)

And now it looks like this...

(I don't buy into this whole "weeding the garden" thing. A few weeds didn't stop this thing!)

See now NON round it is? Apparently you're supposed to turn them?

*You can still leave a comment on the post below to win a book!

Book Giveaway!!

2009-09-24T11:44:00.000-07:00

I have a mini library in at least 3 rooms in my house. So, because I'm decluttering and because I like you all so much I've decided to have a book giveaway! Just leave a comment and I'll choose a winner randomly Monday morning and you can have your pick of one of the three books!

These are all devotionals... Two are specific to married couples, one is not. The books & authors are:

Night Light, A Devotional For Couples by James and Shirley Dobson

Never Alone, devotions for couples by David and Teresa Ferguson

Give Thanks with a Grateful Heart by Songs 4 Worship

Stay tuned for more giveaways!

International Mitochondrial Disease Awareness Week

2009-09-21T12:49:00.000-07:00

September 20-26 is Mitochondrial Disease Awareness week.

I know I have shared plenty about Mitochondrial Disease before but I recently put together some information for those that don't know much about mitochondrial diseases and I thought I would share that. Some of the information comes from http://www.umdf.org and http://www.mitoaction.org

What is Mitochondrial Disease?

Mitochondrial diseases occur when the mitochondria, the "powerhouse" of the cell which provides more than 90% of the energy the cell needs to function, fails to produce enough energy a cell needs to function. When cells do not have enough energy to function, they die. When enough cells in any organ system die that organ system fails.

SYMPTOMS:

Symptoms vary from person to person depending on which organs are affected and the percentage of faulty mitochondria within that organ. Most commonly affected are the brain, muscles and heart because they require a lot of energy to function but because most other organ systems are made up of muscles and nerves any organ is susceptible to the disease.

More common symptoms are:

-muscle weakness

- fatigue

- seizures

-gastrointestinal dysfunction

- developmental delay

- vision and hearing loss

-autism, autistic-like behaviors

-increased risk of infection

-autonomic dysfunction(click here for more information)

- organ failure

FACTS:

* Mitochondrial Disease presents differently for every individual

* 1 in 4,000 children will develop a mitochondrial disease by age 10

*Mitochondrial failure causes cell injury that leads to cell death. When multiple organ cells die, there is organ failure.

*The World Health Organization(WHO) calculates that neuro-degenerative diseases, also associated with mitochondrial dysfunction, will become the world's 2nd leading cause of death by the year 2040.

What causes Mitochondrial Disease?

For many people Mitochondrial Disease is an inherited condition that runs in their family. Some acquire symptoms due to other factors, including mitochondrial toxins.

What are the challenges of living with a Mitochondrial Disease?

Lack of awareness and understanding
Mitochondrial disease is often and "invisible disease"

*Good day-person looks healthy. They have more energy and look rested.

* Bad day- person appears tired of ill. They are obviously fatigued.

Mitochondrial disease is unpredictable. Day to day, hour to hour, the person can develop symptoms and their stability can be threatened.

What is the prognosis or outlook?

Once a person is diagnosed, proper testing and treatment are received to relieve symptoms and try to delay the progression of the disease. There is no way to predict the course of Mitochondrial Diseases. They might progress quickly or slowly, even over decades. The disease might also appear stable for years.

Today there is no cure for Mitochondrial Disease; treatment is focused on energy conservation and vitamin therapy. The goal is to pace activities, avoid exposure to illness, ensure adequate nutrition and hydration, and to maintain and ideal, environmental temperature.

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

Thanks for taking the time to read this. I know quite a few that have read my blog for a while likely know this information but for those that don't I hope you learned something new because awareness is key for families affected by this disease!

the many faces of Kaydence

2009-09-18T10:38:00.001-07:00

and now to get a few things off my chest.

2009-09-15T13:23:00.000-07:00

Today has been a really frustrating day.

It started off that way when Emeric ended up with a temp after days of "weird" poop and not being able to walk. So, instead of him starting school today we headed back to the doctor for more blood work. Watching your kid shed alligator sized tears this often over blood draws is something I'm sick of trying to get used to. After labs we head to the clinic to get a urine bag to try to catch some urine, bring in our stool cultures and wait to see the doctor.

Two blood draws, a urinalysis, stool cultures and a chest x-ray later we still have no answers as to what's going on with him. I'm sure it's "just a virus". Thankfully our new doctor is awesome and she realizes that you don't say it's "just a virus" when you have a kid who ends up not being able to walk from it. Our old doctor said everything was "just a virus". I could see if I were an overly paranoid mom who took my kid in for every cough or fever how annoying that would be so the last time that Emeric couldn't want because he was sick and she assumed it was "just a virus" was the last time we saw her. She just did not understand.

I'm sure there are at least a few people thinking I'm just overly sensitive or crabby or making a big deal out of nothing but I can't tell you how reassuring it is to FINALLY have a doctor that understands, cares, and is proactive. She realizes that while most kids can run a fever of 105 and need nothing more than to just stay home and rest, Emeric can run a temp. of 99.5 and lose his balance enough to fall off the deck and land face first into a pile of landscaping rocks like he just did.

And then we have school. Emeric was supposed to start today. Emeric's nurse was supposed to go with him 1x a week. Well, neither of those things are happening. The school won't allow Emeric's nurse to come in. They say if he needs a nurse they will hire him one. Ok, whatever. So they ok it for our nurse to at least go in and train in Emeric's para so she knows what to watch for with him. Ok, good I am fine with this. Then the nursing agency calls. No, actually the nurse cannot do that it turns out. It's violation of some law or policy or license or who knows what. So now since the nurse cannot go to school with him that takes 3 hours off her schedule which means she'd only be working for 4 hours and she doesn't want to have a half day. That means we lose the nurse on Thursday's altogether.

Whatever.

Turns out I missed an appt. on Monday for Emeric. Our doctor had just set it up the week before and said this was the only time he could get in to see this hearing specialist and I stupidly didn't write it down right away on my calendar and missed it. Of course I missed it, that's just the perfect ending to an already crappy day.

I guess this is the point where people who are reading wonder if I'm done complaining. I suppose it should be.

I am just really, really, really tired. I feel like I've wrote a post all too similar before? Ah well, it's been a while, I think I'm entitled.

I should know by now that things are never easy. That just when things start going smoothly something has to happen to throw it all off. I should know by now that when I complain about my life a million other people have it much harder than I do. And I do know that, and yet here I am saying it all anyway. Sigh.

I want to be thinking about potty training and time outs. I'd take that any day over medications, therapy, new medications, lab work, hot weather. I want to put Emeric in Awana at church and listen to him memorize the verses. I want to talk about stuff without crying. I want to talk about anything else but this. I want to be able to get excited with my friends whose kids are doing typical things instead of feeling sorry for myself that my kid isn't doing the same thing. I'm tired of rejoicing over sign language instead of actual words.

Today has been a bad day. I know tomorrow will likely be better. I know God is faithful and that he'll give me that peace that I've had before but for today I'd like to believe that God cares just as much about my crappy day and bad mood than he does about my good moods. I do believe that when I wish I could tell Emeric to "be quiet" because he won't stop talking that God cares.

So, with all of that I guess I'll leave you(or maybe just myself) with a verse:

"He will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain. All these things are gone forever.”

Bits and pieces

2009-09-11T05:24:00.000-07:00

Kylie started school on Tuesday. She is loving it! She isn't thrilled with getting up early or "rest time" at school which she claims is "boring" but otherwise she's having fun. The other two kids and I had plans to just stay home all week but of course nothing ever works out that way. Emeric ended up needing a blood draw up in Fargo and then Bible study started and therapy and yeah, no full days at home.

Our schedule just got much busier with school starting! I'm giving piano lessons again this year and that takes up 3 nights and then I'm doing girl's group for our church which takes another night and Awana and then Kylie wants to be in Girl Scouts and AHHHHHHHHHH it's too much! I know it's bound to only get worse as soon as I have three in school!!

Emeric starts his class next Tuesday. His class consists of 6 BOYS! Those poor teachers! :) I asked him if he was excited and he said "no" but that doesn't mean much as he says no to basically everything.

We're nearly finished with our basement and once it's complete I'll post pictures of the start to finish project. It looks much different and it's going to be weird to essentially have two houses!

The 1/2 marathon I'm running is tomorrow and I am getting really nervous! I'm so afraid I'm going to end up hurting my knee or something stupid and not finishing and then all that training is for nothing! UGH! Ok, I know I need to be optimistic so I WILL finish! :)

Well, I better get ready for the day before the other two kids wake up and need 18 things!

Happy Days

2009-09-02T10:33:00.000-07:00

Just some things that make me happy!

Our lone pumpkin

Fresh veggies from the garden

Beautiful sunsets

Flowers in our yard

Sibling love

Houston

2009-08-31T20:19:00.000-07:00

Outside our hotel window... Where the Houston Texans(football team) play

Kylie called these "pine" trees :)

We went to the Children's Museum and there was a 3 story "thing" for kids to climb on. Kylie had a blast! Emeric was MAD because he couldn't be on it. Mad was really an understatement. He tried to sneak away from me twice and climb onto it.

Kylie was quite the scientist!

Grocery shopping...

Face painting was up to the parents. As you can see, I'm not a good artist.

Especially with a moving target!

I think those are supposed to be whiskers...

Emeric being a goon. Notice me taking the picture in the mirror? :)

Watching Kylie to see how it's done.

The Zoo...

The kids loved brushing the goats!

Emeric wasn't fond of the heat.

Kylie, the bald eagle. :)

Beth Moore

2009-08-28T10:56:00.001-07:00

Here's a video from the Beth Moore conference we went to a couple weeks ago. I'm actually in one of the pictures, see if you can find me! ;) I'll give you a hint... There's a young girl in the picture with her mom at the same time. :)

http://livingproofministries.blogspot.com/2009/08/lpl-fargo-nd.html

Home from Houston

2009-08-27T10:24:00.000-07:00

We left early Monday morning for Houston. Kylie was really excited to fly on the plane since she doesn't remember being on one when she was 9 months. I remember it all too well however! She cried most of the time and passengers were giving me tips on how to get her to stop crying. (insert eye roll here) This time however Kylie did fine while Emeric was the bearer of plenty of loud noises. Mostly random screeching.

We landed at 12:30pm Monday and headed to check into our hotel. We had plans to go to the zoo and decided to go right away because it was supposed to rain the next day. It was pretty hot so Emeric was tuned out most of the time and not nearly as excited about the animals as last time. Kylie had only ever been to a zoo once so she was excited! I took her in the reptile exhibit and showed her all the snakes. We saw one(at least 10 feet long) lying in the water and Kylie looked at me, very surprised and said, "Mom, is that snake waterproof?" I laughed and said it looked like it was.

After the zoo we headed to the mall, which I was very proud to find on my own. Well, and with a little help from Mapquest. Houston is the 4th largest city in the U.S and I'm not exactly used to driving in big cities. Minneapolis doesn't even come close!

Tuesday morning we got up and left right away for our appt. A nurse weighed and measured Emeric and asked if we were from Michigan. I said no, we were from MN and she said, "Oh, I grew up in MN and I knew from your accent you were from somewhere up there!"

I thought for a split second about throwing her off with a few "ya'lls" but I didn't. And only because it was just her there so referring to her in the plural sense didn't seem right, not because it's completely unheard of for me(or most Minnesotans for that matter) to use ya'll. I have thought about starting though. It seems cool.

Anyway...

The appt. went well. Thankfully this time there was only one med student with instead of 5 so that meant only having to explain everything twice instead of 6 times! If you read Emeric's caringbridge than you've already heard what we found out at the appt. so in that case feel free to skip down. :)

All of the tests that we ran after seeing Dr. Koenig in February were normal. She thought that because his B12 levels were so low that it was possible he had primary deficiency in being able to metabolize B12. Since this isn't seen commonly with mitochondrial diseases she believed there was another primary condition going on. She doesn't believe this anymore. Mostly because there's a criteria used in determining if a person has a mitochondrial disease and Emeric qualifies as having a "definite mitochondrial disorder" under this, very specific, criteria.

Because mitochondrial diseases are relatively new much is still being learned about them. The muscle biopsy has always been considered the "gold standard" in terms of diagnosis and only recently are doctors realizing that not all patients with mitochondrial diseases have abnormal muscle biopies and if they are abnormal it isn't always in the way first thought. That's true of Emeric. His biopsy is abnormal but not in a "typical" way so that threw them off. However, because he has involvement in more than 3 organ systems, has lab abnormalities that prove the mitochondria aren't healthy and changes on his muscle biopsy they've determined that this is likely a primary mitochondrial disease.

Dr. Koenig did say that maybe 5 years from now Emeric will present with a new symptom that will lead them to find a different diagnosis but it's unlikely because he fits so well with a Mitochondrial Disease. Also, the doctor was hesitant initially to diagnose him with a primary mitochondrial disease because then doctors stop looking for all other conditions but now they have tested Emeric for everything they can think of and he has none of the diseases they've been looking for.

What this changes is that it means we stop looking for potential primary conditions and assume that the mitochondrial disease IS the primary condition. We approach it mainly from the standpoint of managing symptoms.

I trust Dr. Koenig because she has been very cautious in diagnosing him before she really felt 100% sure.

So, our official diagnosis is still Mitochondrial Disease but without the "unknown metabolic disorder causing secondary mitochondrial dysfunction". Hopefully that makes some sense. I know it's all really confusing!!

Prognosis is still largely unknown. Mitochondrial diseases are considered life threatening and life limiting. There is no cure but the diseases, while progressive, progresses much differently in everyone so there's really no way of saying at this point what it means for him long term. It does mean this isn't something he will grow out of and it is an explanation for all of his issues.

For now, I'll leave it at that.

I also got a call while I was there from Kaydence's pulminologist. She was on antibiotics for 6 weeks for chronic sinus infections. A few weeks after the antibiotics were stopped I felt like she had another infection so we took her in for another x-ray. Turns out she does have another infection. So, she is on antibiotics AGAIN and steroids for 6 days. She will see the doctor in a few weeks and he's assuming she's going to need her adenoids removed. Let's hope this is the case because if it isn't her adenoids causing the problems it's likely a more complicated problem to try to fix. I'm going to stay hopeful that it's her adenoids and that once removed the infections will stop and in turn this should help her asthma.

So, we left Houston with a lot of appt's! Emeric needs to see a nephrologist for his kidneys because there may be a potential issue with his kidneys(we've seen some suspicious things in his urine tests), he will have tests done and sent to an immunologist because there are some "off" things with his blood, he will have a hearing test done, see an opthalmalogist to check his eyes again just to make sure everything is still healthy and he'll have a blood test done to potentially determine genetic inheritance of the mitochondrial disease.

Kaydence has an appt. next week and then in 3 weeks with the pulminologist.

One funny thing... When the pulminologist called he said he would call in a couple prescriptions for Kaydence. He asked the name of our pharmacy and I told him and then gave him the number. He said, "You know the number by memory?" and then laughed. I told him that yes, unfortunately I do!

All in all our trip went well. We did nearly get into an accident when a car was trying to get into our lane. I ended up swerving sharply to miss her and veering to the side of the road in the grass. She pulled over, very upset as was I. I don't know how I even saw her coming into our lane but we were going nearly 70 mph so had she hit us I don't want to imagine what would have happened!

Needless to say I have much more on my mind than I can process so at the risk of ending up with a 12 page blog post I'll end this now!

Happy 3rd Birthday Emeric!!!

2009-08-21T05:00:00.000-07:00

I thought I'd share some very random, non-chronological pictures of Emeric(most are from the last year because I didn't feel like hooking up my hard drive with older pictures of him on there!)

Happy 3rd Birthday Buddy!

We've had a great 3 years with Emeric. He's taught me more about life than I would've ever imagined and I thank God everyday for him!

Eating cake on his 2nd birthday!

Still cute with a scraped up, dirty face and messy hair!

Some stats:

At 3 years old you are 29.8 lbs and 37ish"

You LOVE Pediasure and your blanket(nani)

You love trucks and pestering your sisters!

You like to show off and make people laugh!

You say: mama, dadda, nani, wan tha(want that), ju(drink), ow, boom and no

Your least favorite things are: listening ;), eating, therapy(most of the time), and hugs.

Hair, conferences and strolling...

2009-08-19T06:47:00.000-07:00

Kaydence wanted her hair cut "like daddy and Emeric's" but thankfully I convinced her to keep it a bit longer. :)

I went to a Beth Moore conference this last weekend which was great! Over 4,700 people!

Travis Cottrell was the praise and worship leader

A picture of Jill(my sister in law) and me(with a huge looking head)

Epilepsy Stroll 2009

Kylie and Johnna

Jill and Ben(They're the ones moving into our basement)

Gimme 5!

Kerry(my sister in law) and my friend Erika

Jill trying to win us the "Spirit Award"(we did end up winning! :))

It was SUPER hot so I don't think Kaydence was thrilled

Some of the people on our team

THANK YOU!

2009-08-14T11:12:00.000-07:00

A huge thank you to those of you that donated to our Stroll for Epilepsy or walked with us last night! We had a great turn out and I am so appreciative to those who took time out of their day to walk for a cause that is hugely important to us! We had a lot of fun and I will get pictures up soon but for now I'm packing because we have our church family campout this weekend and tonight I'm going to see Beth Moore!! I'm so excited! It should be a great conference and great to get away with other women for a couple days!!

Cure Pity

2009-08-09T13:22:00.000-07:00

A friend of mine posted this link on her caringbridge site and I wanted to share it too. It's http://www.curepity.org.

The basic premise of the website is this: "...to look beyond the challenges children with disabilities face, and instead realize the enormity of what they can accomplish through spirit, sheer willpower, and leading-edge medical care. I refuse to focus on the obstacles that children with disabilities may encounter; but rather on their determination to face—and overcome—them."

Maybe you know a child with special needs and if so this message is one to remember. I know from experiencing pity in regards to Emeric's situation that it's the least comforting of anything someone might want us to feel. We don't look at him as pitiful so we'd hate for someone else to either and yet I understand too that it's common to react this way because we don't know what else to say or do sometimes. So, for that reason I share this site. I like to get others thinking and I like to be challenged myself!

Did you know?

2009-08-07T09:52:00.000-07:00

Since I've been in a blogging slump lately I decided to steal this from my friend Jessica's blog...

1. What Color Is Your Toothbrush? White with purple

2. Name One Person That Made You Smile Today: my kids

3. What Were You Doing At 8 Am This Morning? sitting with Emeric

4. What Were You Doing 45 Minutes Ago? talking on the phone

5. What Is Your Favorite Candy? maple nut goodies

6. Have You Ever Been To A Strip Club? never have. never will

7. What's the last thing you said out loud? "don't spill"

8. What Is The Best Ice Cream Flavor?I'm not a huge ice cream lover but I suppose something with pecans and caramel

9. What Was The Last Thing You Had To Drink? Coke

10. What Is The Longest You Have Gone Without Sleeping? 3 days

11. Have You Ever Made a Promise You'd Die to Keep? I don't think so

13. The Last Sporting Event You Watched? basketball

14. What Is Your Favorite Flavor Of Popcorn? caramel

15. Who Is The Last Person You Sent an email to? Nena

16. Ever go camping? yup

17. Do You Take Vitamins Daily? No, but I should

18. Do You Go To Church Every Sunday? yes

21. Do You Drink Your Soda With A Straw? if it's a cup with a lid, or at a restaurant yep. Otherwise nope.
22. What Did Your Last Text Message say?"Will you return the movies?"

24. Where Is Your Dad? in the woods

25. Look To Your Left, What Do you see? an old breastpump, guitar case, towel, papers, ok too much to list
26. What Color Is Your Watch? Don't wear a watch.

28. What did you do yesterday? went to Menards, babysat, worked on finishing my basement

29. Do You Go In At A Fast Food Place Or Just Hit The Drive Thru? Depends

30. What Is Your Favorite Number? I guess I'm not really partial to any specific number

31. Who's The Last Person You Talked To On The Phone? A doctor

2. Any Plans Today? nothing worth listing

34. Biggest Annoyance In Your Life Right Now? myself

35. Last Song Listened To? From the Inside Out because it's on my blog

36. Can You Say The Alphabet Backwards? Probably extremely slowly.

38. Favorite Pair of Shoes You Wear All The Time? flip flops, unless it's winter and then random pairs of shoes

39. Are You Jealous Of Anyone? yes

40. Is Anyone Jealous Of you? Not that I know of

41. Do You Love Anyone? yes

43. What Do You Usually Do During The Day? take care of the kids, do laundry, bring Emeric to therapy, clean, waste time on the computer, eat...

44. Do You Hate Anyone That You Know Right Now? no

45. Do You Use The Word 'hello' daily? mostly when answering the phone

46. Meaning of life? Loving

47. Do You Like Cats? NO.

48. Have You Ever Been To Six Flags? nope.

49. How Did You Get Your Worst Scar? I don't have any major scars but I do have 4 on my ankles from playing hockey two years ago and my skates were rubbing on my ankles.

50. Last big talk? today.
51. Last Cd Played? Sara Groves
52. Last Bubble Bath? last week
54. Last Meal? Subway... Pizza and mt. dew
55. Have You Ever Dated Someone Twice? yes
57. Have You Ever Fallen In Love? yes
58. Have You Ever Lost Someone? yes
59. Have You Ever Slept Until 1pm?I don't think so
60. Have You Met A Famous Person? I've met Charlie Pride. LOL
61. List Four People You Can Tell Pretty Much Anything To? Anna & Karri... Can't really think of 2 more

62. List Three Favorite Colors/shades: Pink, Purple, Blue

63. Laughed Until You Cried? yep.

64. Went Behind Your Parents Back? yes

65. Who Posted This Before You? Jessica

66. Opinion on Abortion? I probably have a stronger opinion on this issue than any other... I very much disagree with it.

67. Lowering The Drinking Age? nope.

69. Who Are The Best Huggers That You Know? I don't really like hugs all that much but I guess the best huggers would be those that give side hugs and do it genuinely and not out of awkward, not know what else to do, kind of thing...

70. Do You Believe In Love At First Sight? no

71. Is There Something You Want To Tell Someone? yes

72. Something that makes you go "hmmmm?" I agree, Jess, fake people. And lots of other things.

73. Would You Kiss Someone you just met? Only if it were Patrick Dempsey ;)

74. How Many Kids Do You Want To Have? 3

75. Do You Want To Change Your Name? no

76. Last Time You Saw Your Father? 5 years ago

77. What Time Did You Wake Up Today? 7:00am

78. How Old Are You?28
79. What Were You Doing At Midnight Last Night? sitting with Kaydence on the chair holding a heating pad around her legs because they hurt

80. What Is Your Favorite Thing In Your Room? the carpet. Since I rarely see it my heart has grown fonder of it.

81. Where is your bffae? I don't know what this acronym is... I'm assuming it's Best friend forever and then something else??? Anyway I don't really have a "best" friend.

82. What can you not live without besides food and water? My family. Oh, and the internet. And pizza. And Coke, in a can.

2009-07-29T20:06:00.000-07:00

We're just a little over half way through our Bible school so we've been really busy this week. We've also picked lots of raspberries, done a lot of laundry, cleaned out the van(Yes, this was such a huge accomplishment it gets it's own mention) and finalized details for our trip to Houston. Kylie is coming with me and she's really excited! Kaydence is excited to stay "somewhere". She doesn't particularly care where she just wants to go somewhere alone.

A week from today Jake's sister and her husband will be moving in for 2 years. We still have a lot of work to do on our basement but hopefully it will be finished soon!

I'll leave you with a couple pictures of the kids.

Overwhelmedness.

2009-07-22T13:59:00.000-07:00

I finally settled on keeping Emeric's appt. in Houston in August. I was going back and forth but needed to commit to it so it was one less thing I was worrying about doing. Just him and I are going to go and for just 3 days. He has a follow up appt. with the Mitochondrial Disease specialist and then hopefully *fingers crossed* we don't need to go back there.

He has a few other appt's coming up and another EEG which I just got word of today was pushed back to the end of October.

Kaydence has to go back in next week for another sinus xray because we're pretty sure the sinus infection is back. I don't know what to do if she has it back after 6 weeks of antibiotics because I don't plan on putting her back on antibiotics.

I've been busy preparing for Bible school which I'm helping direct this year so that's been a lot of work trying to get it all together. I'm also preparing to send Kylie to school in just over a month and we're still working on finishing the basement.

So, needless to say we've been staying busy! I'm looking forward to fall actually because while it's still busy it's more of a routine.

Like father, like son

2009-07-18T20:34:00.000-07:00

"I'll be right there dad, just let me get my shoes on."

"On second thought, just one shoe will do."

"This sure does match nicely with my shirt."

"Alright dad, I'm set."

" Nevermind, I can't get this stupid shoe to stay on my foot!"

"Forget that shoe, this one is much easier to work in."

"On second thought maybe shoes are overrated."

"Hey dad, is there anything else I can help with?"

"I wonder what's in that tool belt?"

"Nails? Those aren't nearly as much fun as shoes!"

"Bye dad!"

Some things you might see if you came to our house...

2009-07-15T11:29:00.000-07:00

Raised garden beds

(this is actually my mother in laws but since we live approximately .2 feet and the kids insist on going over at least 2x a day you'd likely see it if you came to our house)

Horses

*Yes, this is a photographers nighmare but it was way too light and everything got washed out so I just badly edited the heck out of it so you could see the horse sniffing Emeric. It was pretty adorable if you ask me and being that you're all nice people you can forgive bad lighting, editing and the like. Right?

Kylie freezing after swimming

(Which means there was a lot of whining involved)

Emeric's goofy grin

My sister refusing to let me take her picture.

I suppose it's possible she gets that from my mom?

Jaymen and Emeric(who are 12 days apart)

Kylie, Baylee, and Kaydence. Oh and Betty, the doll.

Children wrestlingChildren posing for a picture

A rainbow after a rainy day

Stay tuned for more "things you might see if you came to our house" photos!

2009-07-14T18:30:00.000-07:00

Mish Mash

2009-07-12T19:45:00.000-07:00

We got home today from a weekend away. Jake's friend got married in Wisconsin so we made the 7 hour drive on Friday by ourselves(left the kids with Jake's parents) and spent a couple days there. Jake was a groomsmen and for the groom's dinner on Saturday we took a huge houseboat out on the Mississippi River and had dinner there. It was sooooo pretty and I'm kicking myself for not bringing my camera! My friend did take some pictures so I'll have to get them from her and share them. We had a lot of fun and we haven't been away together for a weekend ever that we could remember.

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Running is going well. I'm off schedule by a day now because of the wedding. Last week I ran 13 miles and it should increase by about a mile each week. Jake is running too and I'm a bit envious because he's pretty fast already! I'm not really looking to be competitive time wise, I just want to finish.

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

Looks like July and August are going to be really busy months for us. I'm directing Bible School with my friend Karri and there's a ton of planning to be done. Bible school is in 2 weeks!!

In August Emeric has an appt. with a specialist in Duluth and then his Stroll for Epilepsy is August 13th. On the 14th-15th I'm going with a group to see Beth Moore who will be in Fargo and then heading straight over to our church family campout the same weekend. August 21st is Emeric's 3rd birthday and then August 25th I leave for Houston for an appt. with Emeric's doctor.

I've been emailing with Emeric's doctor and she strongly believes my family history points to a mitochondrial disorder. She is running a blood test on Emeric that will check for every possible Mitochondrial DNA mutation known. She thinks I should have the same test done to compare results because your mitochondrial dna are passed on only from the mother so if Emeric has some variant of a gene or mutation that I don't have that would tell us that the mutation is what is causing his health issues. So... I'm hoping my insurance will pay for me to have the test done since it's for family history purposes and not really because I'm showing symptoms.

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Kylie is getting nervous about school already. Poor girl. I'm nervous too. I'm still not at peace with our decision to send her to public school so I'm hoping that things either go very well or terrible and then we'd know right away if we made the right decision! :) I am willing to homeschool her if she doesn't do well in public school and I want my kids to always have either option. Let's hope she likes it though! :)

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Jake's sister and brother in law are moving in with us for 2 years. They're going to live in our basement while his sister gets her master's degree at a college nearby. We're hoping it will work out to switch out from nursing care to having a Personal Care Attendant and then Jake's sister would be able to have a job working with Emeric.

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Well, enough updates for one night, I'm off to bed!!

Emeric is modeling...

2009-07-03T07:17:00.000-07:00

His mohawk

His new homemade(obviously, lol) shirt

His mimicking skills

My Montage 6/28/09

Running Update

2009-07-02T19:38:00.001-07:00

This second week has been a bit easier than the first week of running. Since Sunday I've ran 12 miles and tonight I actually beat my time for a 3 mile run so that was good. I'm feeling much better, not so sore, and my shoes are broken in. Next week the runs increase so hopefully I'll survive them! :)

A fractured brain

2009-06-30T11:56:00.000-07:00

Brains fascinate me. Especially the brain of one particular child, Emeric. If someone granted me one wish it would be that I could get inside Emeric's head and figure out how his brain works. This kid puzzles me and puzzles all his therapists. Some of his therapists have been with him for 2 years and aren't any closer to understanding how to get through to him, how to help him understand and learn.

Emeric learns atypically. Whereas a typical child grows up and learns without much effort really from the parents Emeric does not. Emeric has to be taught. Most kids learn from watching their parents. Emeric does this too but it takes intentional, focused, and lengthy teaching for him to learn it.

Emeric's therapists might teach him how to do something or what something is for and he might do it. Once. And that's it. It's as if his brain completely erased the memory of how to do what they'd asked. Or he just doesn't see the point in doing it, who knows.

He doesn't really seem to be bothered with things like pleasing people and I feel like this hinders his ability to follow directions and to learn. A lot of children want to please you so they'll do what you do to get a reaction. Emeric does this sometimes but not often. If his therapists hand him a toy to get him to mimic what they just did he'll usually throw it. Or he'll hit them.

I realize that makes him sound like a brat and since he's nearly 3 it would seem that he should "know better" and just listen. While those things sound nice on paper they aren't true for Emeric. He doesn't think like a 3 year old and while he definitely has times where his defiance is intentional and intended for disobedience most of the time he just doesn't seem to see the connection between being asked to do something and actually doing it. The "good job's" and "way to go's" aren't as much of an incentive as they are for typical kids.

Some days Emeric's brain seems to function pretty well and other days his brain seems to have said, "See ya, I'm taking the day off!".

So, since I'm at a loss as to how to really continue helping him learn I made an appt. with a specialist in Duluth. She actually works out of a free clinic and will do a consultation for us. She specializes in Autism and Autistic like disorders and will see him in August.

In the meantime I decided to start using the PECS book I made for him a bit more and using social stories to try to get some basic understanding of things like not hitting, not throwing toys, etc. down.

Wish us luck! With his attention span(or lack of) we need all the luck we can get! :)

Sand, sun and silliness...

2009-06-28T18:50:00.001-07:00

Per my sister's request...

2009-06-26T07:38:00.000-07:00

Day 2 and Day 3...

(Don't worry, I won't chronicle EVERY day :) )

Day 2 I ran 3 miles. I made a bit better time but my legs were killing me.

Day 3- That's today and thank you lord it's a DAY OF REST. My feet have blisters on them from my shoes but otherwise I actually feel pretty good. If my back wasn't burning up from sunburn I'd feel even better.

Stay tuned for pictures of what we've been doing the last few days!

Day One.

2009-06-24T20:32:00.001-07:00

I lived.

I ran 3 miles today. Took me 40 minutes.

Woot.

Camp.

2009-06-22T08:43:00.001-07:00

I got home Saturday afternoon from camp. I counseled this year for senior high girls. We left Sunday for a staff retreat and spent the day planning our week and getting ready for campers to arrive. Campers started coming Monday around 2:00pm and for the next 5 days the running around didn't end. From 7:30am until 11:30pm our schedules were packed with chapel, small groups, sports, swimming, more chapel, more rec, etc.... It was a blast and I'm so glad I decided to go!

Surprisingly I really didn't miss my kids much which was great. I prayed about it a lot before hand that I would not miss it because I knew if I did it would make camp a lot less fun than it could've been and I didn't want that so I was glad that the week flew by.

Now I'm back home and back to the grind of Emeric's therapy, phone calls and the same old stuff.

One thing that isn't the same is I'm training to run a 1/2 marathon with my sister in law, Jill and her husband. I figure if I admit I'm going to do it that will give me the motivation to actually follow through. The thought of running 13.1 miles makes me laugh at this point but this is something I really want to do and I'm just hoping my asthma and runner's knee don't stop me.

So, if you don't see me blogging for a while it's probably because I can't move.

I heart Jack Handey

2009-06-11T11:35:00.000-07:00

"I can't stand cheap people. It makes me real mad when someone says something like, "Hey, when are you going to pay me that $100 you owe me?" or "Do you have that $50 you borrowed?" Man, quit being so cheap!”

Randomness...

2009-06-09T11:55:00.000-07:00

I want to take a road trip. Anyone want to join me? I thought about maybe renting a car and just going for a few days. Will $300 that I made garage saling cover this trip? Hmmm....

All joking aside(oh wait, I wasn't joking) I really do want to take the kids somewhere. I'd love for them to be able to see the mountains so I thought about driving out to Yellowstone but last time I was there I saw a massive snake and I can't get that picture out of my head so now I'm skeered.

How long do you think it takes to drive to New York?

Speaking of not wanting to leave for a week...

2009-06-04T11:04:00.000-07:00

Got a letter from Emeric's doctor today in Houston. It's called an "Interdisciplinary Plan of Care" to give to his doctors, use at the ER, etc...

Allergies: NO LACTATED RINGERS

Emeric has a suspected metabolic disorder. Individuals with metabolic disorders have decreased tolerance to minor illnesses and fasting states and are prone to rapid decompensation. Any change in Emeric's condition should be taken very seriously as he can quickly become fatally ill.

Metabolic disorders are genetic diseases that result in a deficiency of metabolism. All cells need appropriate metabolism to function and metabolic disoders may involve any organ system: brain, muscle, nerve, eyes, hearing, endocrine, cardiac, hepatic, immune, renal. Symptoms become severe during ordinary infections, with exercise(exertion), with stres, or even with heat. Any of these conditions may precipitate a "metabolic crisis". During a "crisis", the patient's organ systems begin failing one at a time. A crisis can develop as slowly as over several weeks or as rapidly as over several hours and a patient with a metabolic disodrer may go from talking and walking to intubated in the ICU within a very brief period. Very few patients survive a metabolic crisis, but with early intervention and supportive care, it is possible.

Emeric's symptoms include: Epilepsy, macrocephaly, GI dysmotility, nystagmus, developmental delay, autonomic dysfunction, reflux, aspiration, dysphagia, poor temperature regulation with easy overheating, decline in neurologic status even with minor illness. so much for helping in the care of this complicated child.

My mind is real at ease now. Not that I didn't know this all before but because seeing it written down makes it more real.

It's gonna be a long two weeks...

2009-06-03T15:38:00.000-07:00

First I have a garage sale this weekend and I'm pretty sure I'm getting sick. Jake was sick, his mom is now sick and I just feel like you feel before getting sick. Lovely.

Next week Emeric has a doctor appt, Kylie's birthday is on Friday and then I leave for a week to be a counselor at our church summer camp. I have never left my kids that long. I've only ever left Emeric overnight and the girls for a few days during out of state doctor appt's.

I am so nervous/worried to leave the kids. Mostly Emeric because he has so many medications and needs liquids thickened and can't get overheated and.... what if someone forgets? And especially now that Kaydence is on a bunch of meds too. Plus we just decreased one of Emeric's seizure meds due to side effects and what if he starts having seizures again?

Sigh.

I plan on keeping myself very busy during camp to keep my mind off it all. Or at least I'll try.

I'm opening a pharmacy...

2009-06-02T05:02:00.000-07:00

After leaving the doctor's office yesterday with three prescriptions for Kaydence I might as well open my own pharmacy.

Kaydence saw an allergist yesterday and we spend FOUR AND A HALF hours there. He's also a pulminologist and deals with lung issues so we discussed her asthma. He wasn't thrilled that she'd had previous allergy testing done because he said the type they did is not that accurate in kids so he wasn't going to take it at face value. He also didn't seem to be fully convinced that she had asthma.

He recommended doing a chest xray, sinus xray, nasal swab, spirometry(breathing test for lung function) and scratch testing for allergies. I was completely against the scratch testing because she was so tramautized by the skin testing they did before but he said this was different and not painful so I agreed to it.

The sinus xray showed chronic sinusitis. He figures she's had a sinus infection for a very long time. He wants her on antibiotics for 6 weeks(yuck), nasal washes 2x a day and Nasonex 2x a day. He said it will likely takes 6 months for the infection to fully clear.

The spirometry showed decreased lung function and proves she has asthma. The chest xray was cloudy and indicates asthma. She needs to take Flovent through an inhalor 2x a day.

The scratch testing showed a mild reaction to dairy and peanut. They aren't sure of the accuracy of the test because even the hystamine, which is what they use for a control, didn't react very much. They want to repeat it in 6 months. For now they took some blood to see if there's a reaction to milk and peanut and he assumed they would be normal(I hope!) but we should know something next week.

I can't tell you all the thoughts that ran through my head when he gave me the results of those tests. Mostly, "Why do I have more than 1 sick kid?" "How crazy will I go giving up to 10 medications a day to 2 different kids EVERY SINGLE DAY?" and more questions along those lines.

Poor Kaydence though. She must be so miserable and probably doesn't even know what it's like to feel good. She's never complained about her sinuses which makes me think she's probably dealt with it for such a long time.

Right now insurance doesn't want to pay for the Flovent or the nasonex. The Flovent comes through an inhalor. She could also take Pulmicort but that's through a nebulizer and it's really much more time consuming to use a nebulizer 2x a day vs. just 2 quick puffs on an inhalor so I'm really hoping insurance gets over it.

I guess the positive side is that I've made a lot of new friends at the pharmacy and bettered my math skills by counting and multiplying doses!

Epilepsy questions answered...

2009-05-30T19:07:00.000-07:00

Thanks for those that asked questions about Epilepsy. I'll try to answer them as thoroughly as I can...

What exactly causes a seizure?
A seizure is caused by an abnormal electrical response in the brain. There are lots of causes of seizures which include structural brain abnormalities, metabolic disturbances like low blood sugar, infection, brain injury...

Is it your brain shutting down?

No. A seizure happens when there is an abnormal electrical surge.

In Emeric's case, are seizures the main symptom of epilepsy or are there other attributes of the disease?

I hope I'm understanding this correctly... Epilepsy is defined as having 2 or more seizures that are not provoked by something like a fever. People with epilepsy are more likely than the general population to have learning disabilities, mental retardation or other health problems and these can be a direct result of the seizures affecting the brain but it may also be due to side effects of medication.

In Emeric's case the Epilepsy is considered symptomatic which means there's something causing the seizures. You could also say he had a seizure disorder because really seizure disorder and Epilepsy are pretty interchangeable. Emeric's other symptoms like low muscle tone, heat intolerance, reflux, etc. are not caused by the seizures but by a metabolic condition. This metabolic condition also causes his seizures.

I hope I understood this question correctly and answered without too much confusion! :)

Can a person with Epilepsy live on their own, or do they need to be supervised?

A person with Epilepsy can live on their own and many do. It really depends on how well their seizures are controlled with medication and the type of seizure they have. For example, if someone has brief absence seizures that last 10 seconds or so and don't cause a loss of consciousness there wouldn't be a real danger posed by being alone. However, if a person frequently experienced tonic clonic seizures or drop seizures which causes a person to lose muscle tone and fall to the floor there's a bigger risk for injury.

Mental retardation of varying degrees is common in Epilepsy and would be a factor in determining if someone could live alone. Mental retardation is very poorly understood and some people with mental retardation can live independently.

Also, are there different types of Epilepsy?

There are many different types of Epilepsy and many different seizure types.

Symptomatic Epilepsy is when there's an underlying cause for the seizures.
Idiopathic Epilepsy is the term used when no cause for the seizures is found.

Seizures are either generalized or partial. Generalized seizures occur when the entire brain is affected. Tonic clonic, absence(staring spells) and myoclonic seizures are generalized. There are many other types of generalized seizures but those are the most well known types. Emeric has atypical absence seizures which are also generalized and similiar to absence seizures but, you guessed it, not typical! :)

Partial seizures occur when one part of the brain is affected. Sometimes it's a very specific area of the brain and sometimes it's the temporal lobe or a larger area of the brain but not the entire brain. Partial seizures are sometimes referred to as "petit mal" and include complex partial seizures.

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Those are pretty brief answers but hopefully will explain a bit more about Epilepsy as I think most people have very limited knowledge of even what a seizure is. I know I did!!

Emeric's new bed

2009-05-29T14:09:00.000-07:00

Emeric's bed was brought out yesterday and set up for us. They accidently ordered a full instead of a twin but were encouraging us to take it because they were already there and I don't think they wanted to send it back and reorder another one. So, they said if we had room to take it. It's HUGE. They had it ordered with padding which we didn't ask for but it seems easily removable and we'd asked for both sides to come down instead of having a solid wood panel on one side like you see. They might be able to fix that though. The head and foot also go up and down.

Epilepsy 101

2009-05-26T20:31:00.000-07:00

I'm looking to put together a booklet on Epilepsy so I thought it might be informative if people had questions about Epilepsy that I could answer. So, feel free to ask anything and everything you want to know. I'm not an expert by any means but I'll do my best. No question is off limits, you can ask something relating generally to Epilepsy or specifically to Emeric if you want.

I plan on doing a separate post to answer the questions and include some of my own information! I'll also use the questions and answers for my booklet. I think I've done a post on Epilepsy before but as our Stroll for Epilepsy approaches in the coming months I'd like to focus on it a bit more!

Fire away!

The Chronicles of My Three Peanuts

Make a Wish-Day 2

Make a Wish-Day 1

Worn out!

I just realized...

It's not so bad.

Summer

Home.

Unfailing Love

April.

Faces of Mitochondrial Disease

A spring walk...

Missing in Action

Just in case...

Conversations with Kaydence

Houston

Don't let it fool you

I've jumped on the bandwagon

Tired out.

Having fun indoors!

No title. *

What are your summer plans?

And life goes on...

Child vs. plant. Again.

Boys and their toys my plants.

A fun weekend!

Five Steps to Real Change in the New Year

2009... Looking back

Wordless Wednesday: Longing for summer already!

Update on Emeric...

Kylie's letter to Santa

Thistlehair, the Christmas bear

My thought of the day

Is it true?

What's going on in our household...

Not a great week!

Wordless Wednesday

Not Me! Monday

Not Me! Monday

Peek a boo and a rare smile for the camera!

Giveaway winner!

Giveaway!!

Epilepsy Awareness

Pray for Gavin's family

Answers never come easily

Mattie Stepanek

Epilepsy Through The Ages

Understanding Epilepsy (Epilepsy #1)

Epilepsy Awareness Month

Telemarketers

Do you vaccinate?

Thoughts of the day

Pet Peeves

Tide Stain Release

What cleaning products do you use?

"Let us rejoice and be glad in it" Alternately titled: I'm pooped.

Vacation on a tight budget

Some thoughts from Beth Moore...

Living With Seizures conference

T minus 6 hours...

Our basement: from start to *almost* finish

The story of the frazzled housewife

I *heart* this boy

Book Giveaway winner!

Harvest and then some...

Book Giveaway!!

International Mitochondrial Disease Awareness Week

the many faces of Kaydence

and now to get a few things off my chest.

Bits and pieces

Happy Days

Houston

Beth Moore

Home from Houston

Happy 3rd Birthday Emeric!!!

Hair, conferences and strolling...

THANK YOU!

Cure Pity

Did you know?

Overwhelmedness.

Our basement: from start to almost finish

I heart this boy

I heart Jack Handey