Getty Owl Foundation

Commence 4th Annual Getty Owl Run/Walk Registration!

From Kate:

Well it is that time of the year. All of the planning, sweat, smiles, and hard work has come to this point…….4th Annual Getty OwlRun/Walk registration is OPEN!

This is our 4th Annual, our 4th year of organizing an amazing day with amazingly positive energy. We are so excited to get this underway.

Here are all of the DETAILS.

Here is where you REGISTER.

I will tons more information as the days get closer, but for now I just wanted to announce that we are up and ready! Oh and we really want to hit a new record this year. Our goal is to have 1,500 registrants. Last year we got sooooooo close.

We hope you can make it, we hope that you tell your friend and we hope you can grab your entire family and be a part of a really fun day that helps Getty Owl Foundation raise funds for SMA research. So far to date we have raised over $80,000! We are so proud, but we know we can do even better.

So mark your calendars for SUNDAY, FEBRUARY 22, 2015!!!!!!!!

Apple Hill Gang & Updates

From Kate:

It has been pretty busy over here this past month. Lot of school, lots of adventuring, and just lots of stuff. I wanted to talk about Getty’s trip to Apple Hill. I used to come here at least once a year with my family as a kid and I have been wanting to share that experience with Getty but have been so reluctant. The weather isn’t good, or really the biggest reason is the elevation. Sacramento sits on, I think about 50ft elevation, nothing significant, but Apple Hill is 3,000ft. Mark and I have never taken Getty anywhere near 3,000ft, so I have always been very worried about that. Will she be uncomfortable? Will her ears hurt due to the increase in elevation? Will they naturally pop if they need to? Will she need oxygen if the air gets too thin? Will we go up there, just to turn around because she cannot tolerate the elevation?

All important things to think about. Well if you can see from the pictures, she was just fine. It was her mom once again that needed to just chill and let her experience life. 🙂 My mom, Angie and I found a great spot that had accessibility. That I number one. If it isn’t paved, then we don’t stop. So we found a great place that had an petting zoo, delicious goodies for us to eat, a beautiful view and trail to walk. They even had a hay maze wide enough for Getty to go into. This place was magical. The weather was just right, Getty was in a terrific mood. I could tell she thought this trip was awesome!

School is going great as well. Her VGo is awesome and it is giving her a chance to be a part of the classroom. She is literally a part of the class. They did a poem last week and she was the red leaf of the story. All the kids looked as she held her red leaf and waved it back and forth. The kids have been awesome this year. They all say good morning and good bye and in between they ask her questions and make her beautiful pieces of artwork. As the kids play with certain manipulatives, Getty is as well. She is learning math, problem solving, and social skills. We are so proud of her. On Halloween, the teacher asked that the kids dress wacky, so I put as many bows in her hair as I could. The kids thought that was pretty wacky.

A least one day a week we have been having “upright day” while at school. Getty is still tolerating being upright with the help of her bi-pap. She loves the perspective and the kids are always super excited when she is. It is so cute to watch one of the kids see Getty upright and then they have to announce to the entire class and 1) Getty is here!!!!!!! and 2) Getty is sitting up! Then the entire class rushes to the screen.

It has been hard to find time to get Getty into her power chair. School takes up a lot of her morning and then after her nap, we do a lot of book reading and playing, so getting her in the power chair time has really been difficult. But we did get her outside yesterday to play and she loved it. Navigating left and right was fabulous. She was stopping when we asked and she even watched her papa garden in the front yard.

The weather is slowly changing and it always makes me nervous. Lockdown has happened, but not? The days are still warmer, so we are trying to get outside every chance we get. Getty keeps growing. It is amazing how much she has evolved in the past year. We are so proud of her. Such a little lady, yet also a fierce warrior.

And the Chosen Costumes are………….

From Kate:

I know everyone is going to scroll to the bottom without reading this…I would as well, but I wanted to thank all of the awesome contestants. It was a joy making our 4th Annual Costume Contest. Every year you kiddos “bring it”. The good news is that some lucky kiddos get gifts cards, the other great news is that over 1,637 votes were cast and even cooler is that my hope is that after you voted you may have lingered on the website to learn about Spinal Muscular Atrophy. So thanks to everyone that stopped by, participated, and voted. 🙂

So here we go:

3rd Place and the winner of the $25 iTunes gift card is…………….arg!

2nd Place and the winner of the $50 iTunes gift card is………………….mummy!

1st Place and the winner of the $100 Barnes and Noble gift card is……………yummy Pillsbury doughboy!

Again, thank you to all of the contestants. There were so many awesome kids and costumes to go with them,

I am sure everyone had a hard time narrowing down the playing field.

Hope you all can come back next year.

Thank you all so much.

Vote! Vote! Vote!

From Kate:

VOTING HAS FINISHED! WE WILL ANNOUNCE THE WINNERS TOMORROW!!!!!!!!!!

The winners will receive these awesome prizes:

• 1st Place: $100 Barnes and Noble
• 2nd Place: $50 iTunes
• 3rd Place: $25 iTunes

BuzzFeed’s 18 of the Baddest Ass Trick or Treaters You’ve Ever Seen!

From Kate:

How is that for a title? I would like to thank Morgan Shanahan and BuzzFeed for posting pictures of some of our incredible kiddos in their Halloween costumes. Here is the LINK. Check it out and then come on back. 🙂 The ability to have a platform to spread SMA awareness and show off some our amazing kids and their costumes is a HUGE blessing.

I can say firsthand how hard it is to find the right costume for Getty. Fitting just right, making sure she is comfortable in it, and positioning her in a realistic position is both fun but also a little stressful. Getty is always such a great sport about everything. Although, when it comes time to a smile, she gives me nothing. 🙂 A bit camera shy or stubborn. Not sure which one.

I worry too much about germs, so we stay inside on Halloween. There are times when I wish she could experience Halloween just like most kids do. As a kid myself, I loved going house to house to find out what kind of yummies I would be rewarded with. At the end of journey the time honored tradition of counting every single piece of candy. In our house I buy some taffy and let Getty taste a little bit while our suction machine is close by after a couple of licks. She seems to like Laffy Taffy’s cherry the best. 🙂

What is similar in our household is the time honored experience of watching Peanuts, The Great Pumpkin. Getty loves it and I love to watch it with her. She giggles when the football is stripped and Charlie Brown is down for the count. Her humor is spot on.

While SMA changes the game plan, kind of like when Lucy pulls the football away from Charlie, there are still many ways to celebrate the holiday. It is just different.

A reminder to everyone interested. We have our 4th Annual Halloween Costume Contest. Here are all the DETAILS. Take lots of pictures and send us one to enter your child to win some really cool gift cards. Check out the details in the link.

Happy Halloween to all.