With the past in hand, moving forward

This picture was taken in May on the last day of school. It stands for so many things in our lives and it helps me bring the past with me as I move foward. I know that people say looking back is bad and it holds you back, but for us, it has taught us so much. We need to bring that knowledge with us into the future. Camryn is about to start another year of preschool. Mr. Jason (teacher) and Mrs. Karen (Para) have been a huge part of Camryn's life. They have helped her along the dark path she has taken with seizures, and in so many ways. They have helped her grow, learn, accept what she has, and most of all, live every day to the best of her ability with laughter! Just look at that giggle she is in the middle of? You can feel the love in that picture, and it's hard to believe that this was 3 months ago. Despite all she has been through, she still giggles like this, she still enjoys life so much. I have these two souls to thank for teaching me how to have a child with such set backs and make the most of them going forward! I hope this year turns out to be better now that we know what kind of seizures she has. It's hard to believe that she has been diagnosed with partial complex seizures from the left temperal lobe. I just can't believe it is so defined! Now I need to get all the ducks in a row with her team at school, get orders on file with the ambulance service that transports her, and help Stacie by making sure she has what she needs and feels as empowered to deal with what Camryn has as we do. No easy task, but we will get there. Every step towards the future carring a bigger suitcase of knowledge with us.

Music Music Music!

Now most people out there get a song stuck in their head from time to time. Some people listen to the radio for hours every day, some go as far as wearing an iPOD every chance they get. And then there are people like me... I do all of the above and apparently I sing and hum everywhere I go. It's not "whistle while you work" but it's still a HUGE part of who I am. The VP of HR at my company gives me crap for my concert/music obsessions, but today, she imitated something I didn't even know I was doing! I was singing while I was walking down the hall to get my mail (bills everyday, feels like home ;) just quieter) and I was oblivious to it. So somewhere around " is it standing right here, singing this song" (sugarland's new CD rocks!!! Helps that a Matt Nathanson song is on it) she starts laughing and since I don't know that I am singing those exact lyrics at that moment, she points out to me that I must have listen to every song on the planet, and therefore are making up my own words. When I try to explain to her what song/band it was from, she just starts laughing harder. Accusing me of trying to cover it up, as if I was that crazy person who talks to themselves and then follows up with a response!!! EEEE-GATS! Could this be me? I am the crazy lady who sings to herself? All the while being only 30???? So I know that music is huge for me, I played 5 instruments, sang in choir for 13 years, and did musicals for 6 years, often with leading rolls. It's just always been a part of who I am. Well little did I realize how out of control my addiction really was... I buy music in stores, online, get copies from friends, go to concerts, look who's coming up in concert, and yes, go on a cruise that is the best floating music festival ever orchestrated!!! Ok, so maybe I know how much I love music, can you blame me? It's so expressive, relaxing, and therapeutic!!! Well today I learned that there are others that are worse. Namely my friend, Veronica, partner in crime for my concert going. She has no children, so it's a full time hobby for her and there are days when I am so jealous I could SCREAM! Days when I wish I could give her the freedom to always order me a ticket no matter what time, what day, what place. Days when I wish I could submerse myself in it and make the world stop revolving around me. My own little utopia. Then there are other days. Days like yesterday that just give me another reason to love music. There is a saying "music is the same in any language, from the heart" and I love this saying. Yesterday, Elli was in the back of the truck requesting music by artist, by album, by song. She knows them in order, she knows them out of order, she knows who wrote them in some cases. She is not music prejudice by any means either. She likes the following... The presidents of the United States Led Zepplin Eagles ABBA Garth Brooks Lady Antebellum Sugarland Jake Owen Cheryl Crow Buck Cherry Three Doors Down Matt Nathanson Josh Kelly Matt Wertz Sheck Sound Track Bruce Springstein's Christmas Rock Now 12, 21, 23 And this is just for starters!! She can be quizzed like any adult and she belts these songs out with so much pride. I look back at this kid who couldn't really talk at the age of 2 and it amazes me how far she has come. She just needed a way to connect to the world around her. And music helped her accomplish this... Just fills my heart with notes!

I included a video of a Rock Boat Rookie feelin' the music!!

The Count Down Begins

So is anyone else getting ready for school? (Not you lucky asses who's kids have already started!!!) Well we are struttin' our stuff, eager beaver style.

I have bought the school supplies, back packs, clothes, and shoes. We are ready. I can't wait for them to start and for life to maybe be a little more normal, yk?






Of course my son is no where to be found. Could he get more camera shy? Must be the requirement to not act like a goon because he always seems to come out of the woodwork then...

The girls were so excited that they both had a backpack, so much that they had to almost strangle each other.



seconds after I snapped the shot, they came tumbling down...

Round 2

Camryn had to go back after getting super close to having another seizures. Though we knew this was coming and that it was a horrible possibility, nothing prepared us for what we had happen.
Dan brought her all the way down there, they made him go through admitting the slow way, then they brought them into a room with a sleeping mom and baby and he then asks "Um.... you do know she's MRSA positive, right?" I don't think he ever heard the word "Damnit" come out of a nurse's mouth!!!
So they hooked her up again, but only after she puked, because they did things the slow way. We learned that if she pukes, no matter where we are, we need to stop and turn around because we won't find out much at that point. She has what they call intermitten ictal spikes, so it's like she's about to have a seizure, the activity builds correctly, but never fires off. At least this is what is going on all the time, and not saying that when we see seizures there is no activity. A good thing indeed. However, the zone outs are no longer petit mal seizures, they are just zone outs to give her brain a break. WOW. So now that she is home, sleeping in her bed, and not hooked up with "pretties" here are some pictures from round 2!







Then there was the scenery right out our window...
James J. Hill's House

The Govener's mantion

The Basilica

The Cinnabon Twins

So I am not sure how many of you eat cinnamon rolls as they are horrible for you, but around here, we have learned that to have is better than to have not, so on Saturday morning breakfast, every 4th week, we make them. The kids love them, especially since I discovered the cinnabon flavored ones. They truely are a cut above the rest...
Dan was brave this one morning, I was so proud of him, he let the girls frost them :)






I love how proud they look (and secretly I am very glad they stayed so clean ;) )

Did someone say CUPCAKES? or should I say Sprinkles????

Now I am a cupcake lover, always have been. I have been completely content with the ones I have made at home, whether box mix or from scratch, butter cream frosting makes everything better, no?

Well my dear friend Veronica decided that she would take me with her on her quest for the perfect cupcake. How could I deny her the right to have an audience? LOL Ok, so more like a partner in crime, but you get the gist!

So we went to a local shop here called Cupcake and thought we had found the right place for us. Now I don't think I have ever been more astonished, let alone let down at the service, and the product!!!! It wasn't horrible, but I knew mine were better. So then Veronica went to Williams Sonoma to buy some cucake holders (plastic containers that hold a cupcake in place, in tact in lunch boxes brown bags, whatever!!! Genius I tell ya!!) and while there, she stumbled upon a cupcake mix called Sprinkles. She saw that if you bought two, you got 2$ off each. She figured, why not. $12 each was better than $14 each, right?

Well she came over, the kids helped make them, and let me tell you, red velvet cream cheese frosted cupcakes are always welcome in my house, or at least they were.


There was cupcake mix...


There were completed cupcakes...



there was frosting...



and then there were helpers fiding all of the above very interesting...



And then the red velvet devils came out...







So let me set the record straight. I am now forever ruined, these are hands down the best cupcakes I have EVER had. I have tried plenty, an I am forever ruined, I can no longer eat just any cupcake and really enjoy it. I guess I will use sprinkles as my "potluck" item any chance I get!!

Generosity of others..

Through all of the hospital stays, through all of the tears, fears, and worries, there has been generosity to be felt by all.

After Camryn was released, after our day in the sun, once back to our old routine, it was easy to forget where we had been, we wanted to forget it. Even if just for a little while. So when we came back home from being at work on Thursday, Dan opened up a lovely gift from his team. Fun stuff for all, shocked the kids didn't shove Dan out of the chair to get to it...





Cam was so excited!!!




Dan's co-worker Sue, gave us money to get her something... so we bought this...

the irony, to save for the future, not knowing if she needs to save for it or we do, LOL

We know that others have touched our lives in ways we may never be able to repay, and we thank you for this. It's truely wonderful to know that you can "fallback" on the generosity of others to put a smile on your face or a warm fuzzy in your heart.

Thank You!

After the drama dust settles...

You realize what in life is important and you come from these tough experiences wanting so much to put all of your energy into making every moment count and slowing down life. You see the sky in a different light...

The sky seems more blue, the clouds more white, and the breeze more calm. This is probably the first time I have layed down in the grass in our yard just to lay there and enjoy it. I had to take a picture of it, to know that this is where I found time, in it's slow form. I so badly wanted to remember this day.

I could see...

painted toe nails...


tattoos...



sombrarros out of floaties..


a mountain lion in my back yard..


the smallest guard dog I have ever seen...


and lastly... SUPERMAN!



all in all, a day I will never forget...

Our stay at the Ritz (Children's hospital to be exact)

So as most of you know, we stayed at Children's hospital for Camryn to have a Video EEG from July 16th-23rd and it was no Ritz, but it sure was close, despite the sleeping accomidations!!!

The staff is nothing short of amazing. They wait on you hand and foot, they try to make it as fun for the kids and as easy for the parents as possible. I can't believe how giving these people are. The best part? Epilepsy has touched them in some way, shape, or form. They give tirelessly, and smile the whole time. It really does make the stay quite wonderful.

Cam's favorite, I think. Meagen, a wonderful overnight nurse who is getting married in September and we wish her all the best!


So there are cameras on the ceiling to tape all activity. Kind of strange knowing that you're on camera with your child, but you forget about them after day 5, I promise!





Though the items they use seem a little daunting, they put pretty braids in their hair to make it easier for them to feel beautiful.



Though towards the end, it just plain hurts, yk?


And they gave her a monkey to keep her company ;)


In the end, it was glimpses like this that remind me how strong she is, no matter what comes at her.

SLACKER!!!

Hi Everyone!

So I know, slacker on the blog, I have been keeping Camryn's updated so at least you know why I have been slacking!!!

Well, watch out, because here come the posts!!!