October 5, 2010

Rett Syndrome Awareness Month!!

October is here, although it doesn't really feel like it. It had to be in the 80's today! But, anyway, this month is a month for awareness. Most of you might think of October as being breast cancer awareness month, but we are going to try to get Rett Syndrome right up there with breast cancer!

Is Rett Syndrome just as prevalent as breast cancer?? NO, not even close. But, it IS just as devastating to the ones it affects AND I would like to believe that it's 100% closer to being cured than breast cancer is (not that I don't wish it were the same for BC).

That's right, I said cured. That means we are on the "home stretch", and if you know just a little about running, NOW is when you start to put a little more effort into your stride. You can see the end, you know you don't have to save anymore energy. The harder you push the closer, the faster the end comes. Then you can FINALLY take that deep breath of air that your burning, tight lungs just can't handle at the moment. You can FINALLY rest your legs- that are at the moment screaming at you for each stride taken. You see, your body doesn't know that the end is near, but your mind does, and your eyes can see it, so you push, push hard to the end. To be done... At least that's how I run. Then again I don't really run to race... at least not distance. I run for the sense of accomplishment that I get when I complete the run. And I like to be DONE.

Well, I got a little taken up with the running bit and got a little off track here. Now is the time where we don't have to think about saving our efforts because the end IS in sight. And the harder we push people to just know about Rett Syndrome the faster the cure will come.

I couldn't believe the kind of results our little purple cards about Nora led to. As many of you know, a crew of us ran the Bolder Boulder this past May and something really awesome happened just because we handed out the purple cards. I had a friend from high school who happens to live there who happened to be friends with one of the girls I handed a card to, who happens to work with special needs children. Too many "who happens to's"? Sorry, anyway, if you weren't following: This friend of mine works with special needs kids and she is enrolled in the Kick for a Cause event ( I think it's a yearly event) where they have teams who play kick ball for a certain charity. If they win, all the money (from entering the event, which is a certain price for each team) goes to their chosen charity. Well, this friend asked me if Nora still had a page for donation and I gave it to her. I kinda forgot about it, but then got an email from Ingrid H. who is the founder of GirlPower2Cure's website saying it was so neat to open her email to find over $1000 donated to GP2C in Nora's honor. I was so surprised when I found out it was from my friend, who at the time I didn't know was in this event. What also surprised me was that I wasn't that close to her and hadn't even realized what affect this purple card could have on people. So, that just showed me! I am now going to hand out these purple cards at any appropriate moment... probably, like, not to the person in the stall next to me in the restroom...but, you know... When the opportunity seems right.

So, other than the purple card I plan on doing some other actual fund raising things and/or awareness events. There is a garden of hope that I plan on taking to local stores to see if they're willing to be involved. It's just like the march of dimes, but with flowers. I think each flower can cost a dollar. I'm excited, but time is slipping by and I need to get on top of it. If anyone wants to help out there's lots of good ideas for fundraising on the www.girlpower2cure.org website and probably all over the web. Just let me know. But please don't feel like you have to. I hate when I feel pushed and that's not what I'm doing. JUST if your interested.

Well, everyone have a fabulouso October! So far it's been amazing weather. I'm sure we will get a snowstorm the last of the month, though. Stay tuned for Halloween costumes. Any ideas?

Randomness follows:
I do cook sometimes... but not nearly enough. Sorry, hubby.

And Justin got some air the other day. He must eat enough anyway.

September 13, 2010

Last of the summer photo shoot!

I thought I would jump in here between my updates and post something current. It was so nice out that I thought I should take the kids to our favorite spot for one more summer (end of the summer) photo shoot. It didn't turn out to be the greatest. I was a little pushy with the kids (which I can't stand, but I had no skills with kids tonight for some reason) and in return they protested a bit. Among many bad pictures from our photo shoot, I actually ended up with a few nice ones.

I think these first two are my faves.

For some reason I love this picture of Nora. It just cracks me up!
One of my tricks here was giving them marshmallows to share. I had to have Coen feed them to Nora, which led to some cute ones. That wore off after a bit... there's even a limit to how many marshmallows a couple toddlers will eat.

And now, the gag reel, the bloopers (whatever you wanna call it. It was the end):

"Really, Mom??? You're still taking pictures?"

Hope you enjoyed. ;)

September 12, 2010

BNU #2 - Nora's Birthday

Here it's been longer than a month and poor Nora hasn't had a proper "Happy Birthday" blog. I hope she will forgive us... ;) Anyway, we had her 3rd birthday bash the weekend before her birthday. It was nice. It was mostly family. Now just enjoy the pictures:

The pretty birthday girl.

Hi, there cousin. What's up?
The cake. I thought I'd try a made-to-order cake this year. Very yummy, much less work, but way more expensive. Jury is still out on this one. I bought way too much cake, though.
Nora's PT was there with her kiddos. Nora loves her. Can you tell?

Family picture.
Nora's new high chair. Thanks Papa and Gramma!
opening gifts.
excuse my poor posture.... still opening.

Thanks to everyone who came and sent cards and gifts. I still haven't written thank yous.... I'm a horrible person.
Thought I'd throw in one more. This was actually after our camping trip. We had done such a good job of keeping mosquitoes off of Nora and then while we were packing up she got eaten up!!! The bite is actually at the corner of her eye, but she swelled up all above her eyelid. Made her look like a boxer. Poor girlie. It was such a sad sight. :(

September 6, 2010

Badly Needed Update #1: Camping in the Snowies

So, it has been quite some time since an update. I have at least 3 I can think of including this camping update. So, hopefully in the next few weeks we will get all caught up.
As the title mentions, we went camping in the Snowies over the 4th of July weekend. It was the perfect camping trip of all times. Except I didn't catch any fish. In fact, I don't remember fishing at all. Hmmm... so much for my season fishing license. Yikes! I better go soon! Anyway, this picture is of all of us before our hike to the falls, but first we decided to get the truck stuck in the river, which proved to be as fun as it sounded (no pics of that, sorry).
Other events we took on were, sitting by the fire, of course.
Learning to walk. (Yay, Nora!!!)
Running up the trail being boys.
Running up the trail being girls.
Playing with fire.
Enjoying a hot cup of coffee in the morning light.
Escaping the suffocating grasp of the dreaded fire smoke. (Yes, my son is retreating into the arms of a girl...I have some work to do.)

Looking pretty for the camera:

Playing house in the truck bed.
Posing around the camp fire for a group picture.
Zonking out on the road home. Dirty faces and all!!
note: You'll have to visit the Aaron and Clan pictures for captured memories of our newly founded head dunking tradition.

August 12, 2010

Rett Conference 2010.... late update.

This was the main floor of the restort that had the conference. We were just waiting around for stuff to start. The dining area/buffet was to the right. They had amazing food! I ate a lot.
Bangin' on the table.
It's all about you, baby.
This is us sitting at our table at the tribute party they held for us. There was lots of yummy desserts in the back. They played a tribute video, had some dancers and Kevin Black (Clint Black's brother) and another young band performed for the girls as well.They had a silent auction as well and Gramma M made this. It was a big hit and sold for a lot.These are a few of the things I made for the silent auction. I also made some nesting baskets, a painting, and a bib with sensory toy attachments.
I just love this heavy beat and music. We got a performance from these dancers. It was pretty cool, but hard to see.This guy was the lead singer of the young band I mentioned earlier. He sang to many of the girls out on the dance floor. It was really sweet.

All in all it was a wonderful event! We learned so many helpful and encouraging things. I would love to go to the next one, if we can afford it. I would have liked to have more pictures, but it was a crazy time. We enjoyed being able to stay with some good friends, so we were close by and didn't have to pay for the hotel as well. Thanks a billion! You know who you are. We had a lovely babysitter as well, who we couldn't have done without. THANKS SO MUCH!!