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!!!

The waiting game continues!

Here we are, at the hospital, same condition we were in on Thursday.
When I brought her in Wednesday she was "post dictal" as they called her. She was post seizure in other words. She didn't talk, respond, or interact much with anyone. However, her last seizure happened while they were hooking her up so it didn't count. Now we have been there 5 days, slowly decreasing her medicine (the one I said wasn't doing anything to begin with) and still no seizure. Our office dr comes in tomorrow and I can't wait to ask him how he feels about that. To say, I know you thought it was too rambunctions, but now can we try it my way???
I just don't think it's any healthier to keep her for over a week doing it this way than it would be to just trigger the damn thing and get the answer, but what do I know, I am only her mother. It's times like these that I would like to get my degree in medicine. Just to say, here is my credential, now can you just listen to me? I want OUR doctor back, the one we started with, the one we were referred to, the one who seem to have such a connection with us.

Right before Camryn went in I ran into her preschool teacher who's son died from mitochondrial disease. (I know I spelled it wrong, LOL) and to talk to him and know what it feels like from the other side just drives me that much further to find out what is going on, but also to live every day like it's our last. I have to think that each moment is precious, even when I feel like pulling my hair out cause it is. It's a precious moment connected to another and another, and finally making up the memories of my life, and my family's life. So we are looking into doing the relay for life walk next year for Mike and we are going to do the Epillepsy walk next year as well. I will be working on this stuff with my mother throughout the next 6 months or so, and I will keep things posted and updated here.

I can't believe that by the time Camryn is 5, we might not have to deal with this stuff anymore and actually be able to take a plane to Disney World. I am so excited!!!

Ok, better go, need to get my work done!

I'm standing on the edge...

Listening to Abraham from The Kin. Link included above.
This is the song that brings me to tears when they come to concert.
They have another song that goes something like "Are you standing on the edge? Can you feel the water break? Can you turn it around?"
These lyrics are so HUGE for me right now. Camryn is going into the hospital and as you can see from her Blog, I am still searching for answers. That is until this week. After the opportunity to talk to Dr. Tanenbaum this week, I have learned that until we find out where Camryn's seizures are coming from, we can't really "fix" them. Now as bleak as that sounds, we still have this EEG/sleep study/epilleptologist meeting on Wednesday. Camryn is going to be admitted on Wednesday morning and we will be there until they can get documented what they need. Basically they are going to remove her medicine until she has a seizure tha tells them where it's coming from, or they see her left side go out, or her sleep pattern tells them exactly why this is all happening. Sounds bad, doesn't it? Taking away what my kid needs, to make her "perform". We hope that this test shows us what we need to help her live the most normal life possible. I just want her to go to school and actually learn instead of being pulled out for ambulance rides, and seizures wearing off, and all sorts of other things. However, I am preparing myself for the worst. I feel like I am on top of a cliff, at the very edge, waiting to jump in to water I can't see. If we do this, will we cause damage, if we do this, will we be able to bring her back to normal? I just feel the pressure of this levy building and I am not sure I can withstand the flood. It may meen some major changes for our family, ones we are not prepared to make any time soon.

Camryn has been such a trooper and is having a great day today, but I can't help but look at her and want to cry for the things she misses out on because of this. I think it's why she smiles alot, like she is letting me know that she is okay with the way things are for her. The beauty of it all is that she doesn't remember most of the bad stuff, so she just knows Stacie, safe hospitals, and us.

I just think it is absolutely crazy that this hasn't put me over the edge already. I guess for now, I just need to enjoy the view as much as I can before I jump in.