Getty Owl Foundation

Spring Forward!

From Mark:

Winter fades away, trees fill, flowers bloom, and the air warms. It is time to emerge from hibernation. In our case, hibernation doesn’t mean a long peaceful dormancy; it means LOCKDOWN! All the work needs to be done and care provided, but Getty & Kate are stuck indoors all winter to avoid getting a sick little girl. If Getty catches a cold, we’re looking at a minimum of 10 days of intensive respiratory treatments around the clock, every 2 to 4 hours without fail. It’s better for us to go stir crazy for a few months than to put Getty at risk.

Then the sun comes out, RSV season tapers off, and we spring forward doing the things we couldn’t do before. This was a perfect weekend for it!

Saturday, we invited Battalion Chief Becky of the West Sacramento Fire Department into our home to visit Getty, look at Getty’s setup and array of medical equipment, discuss Spinal Muscular Atrophy protocols, and devise a basic emergency plan for Getty’s care. It was a great visit! They flagged our address for special emergency dispatch, assured us that first responders would FOLLOW OUR LEAD when administering care, and discussed future meetings along the same lines with ALL the city Battalion Chiefs and the ambulance company supervisor. We will also discuss transferring advance knowledge of SMA to the first responders themselves.

Kate couldn’t attend this meeting because she was taking an opportunity to get out of the house for once. To be more precise, she accidentally gouged the side of her wrist with a big knife and had to get stitches. So, it wasn’t exactly respite time for her.

Sunday, we all got out together! The weather was perfect, and we took a nice drive in the countryside to Winters, California, an old agricultural town with a well preserved Main Street and railroad bridge over Putah Creek, once a rail line from Vacaville. We had just enough time for a great lunch at Preserve Public House and a stroll over the old bridge. Getty was delighted at blowing bubbles on the old bridge, soaking in the sun, and looking at the creek below.

Exploring California has long been one of my favorite things to do. Kate has been nice enough to humor me over the years in this area, especially in one trip where we took a bumpy dirt logging road all the way over the Trinity Alps just because I thought it would be fun. Hopefully, Getty will enjoy the fresh air and seeing new places and things … but we’ll stick to paved highways these days.

It Was A Beautiful Day!

From Kate:

I can’t help but quote U2:

“It was a beautiful day
Don’t let it get away
Beautiful day”

Our 2nd Annual Getty Owl Run/Walk was a beautiful experience. For so many reasons. Here is how the run started and the moment when my heart skipped a beat.

What an amazing way to start to a beautiful day. The weather was perfect, albeit cold, but clear skies as far as the eye could see. Since Getty Owl Foundation’s beginning almost two years ago, the support has been overwhelming. At times, too overwhelming for this mom. People are just so kind and generous. It shoots to another level when people personally come up to us and want to introduce themselves and offer their individual support for our foundation and our family. That is a priceless emotional gift that I simply cannot explain.

There are so many amazing races in the Sacramento area. Some that do incredible things for area non-profits like ours. We have been humbled beyond belief to now have had two very successful years to our resume. We increased in attendance and we increased our overall funds raised. This year I am proud to say on behalf of our entire  board, we raised over $30,000. Speechless would be putting it lightly.

This money will give us the ability to grant more funds for research and it will give us more opportunities to help fund much needed equipment for SMA families.

I would like to thank all the companies, family, and friends that help make our second year not only successful but memorable. You all have given us a chance to become and sustain as race and perhaps the right to remain an annual race in a very competitive market of races.

With special thanks to:

Raley’s Supermarkets                       

California Family Fitness          

The Honey Agency                            

Fleet Feet Sports Roseville           

92.1 K-Hits                    

We would also like to thank:

UC Davis Health System

Geddes Photography

Dandelion & Sacramento Parents Magazine

Sacramento River Cats

Downtown Grid

Sports Authority

Active 20/30

Clif Bar

Go Girl

The Couch Sports Lounge

Health & FItness Magazine

Yelp

 Timmons, Owen & Owen, Inc   Udderly Smooth

Sacramento News & Review

Atlas Disposal

Nugget Market

Zen Martial Arts Center

Childtime Learning Centers

Road ID

Joe’s Crab Shack

We would like to thank all of the vendors and volunteers that helped to make the run a success.

We would also like to thank Kellie and Rich at Capital Road Race Management and Julie at Norcal Ultras for being great companies to work with. Thank you all for being great supports and people to work with.

Getty Owl Foundation is and will always be an all volunteer non-profit. I have asked so much of our board of directors. All of whom have beautiful families and friends that they have had to be away from for many hours to help make the Getty Owl Run/Walk a success. I would like to thank my husband Mark, Stacey, Takoa, and Sarita for working so hard and giving of your precious time to not only this event, but to our foundation. Big thanks to our friends Chrissy, Anna, Shannon, Eileen, Patti, and my mama for always being there for us to help.

There is one component of this story that made this day such a memorable one. Our family got tho share it with other SMA families. Mark and I would like to thank the Calafiores, Strongs, Scanlons, Phelps, Nana Teri for coming and supporting us. It is very easy to be isolated with an SMA diagnosis. So many months are spent inside the house in fear of germs and sickness. Even though we all communicate via email or phone, there is something about getting a chance to hug and be together in one place at the same time, you simply cannot put a price on. Getting a chance to have all the kids in one place so they can give each other “love taps”, “squeezies”, and talk is so beautiful. Even though all of our journeys with SMA may seem a bit different, we all have a commonality of “getting it”. That is a comfort that I cannot describe, I can only feel. Thank you all for coming, you have no idea how much that day meant to Mark, Getty and I.

Getty giving Kaige “squeezies”

All the ladies hanging with Captain Fitness

Love to you Seefloth Family

We are already brainstorming for our 3rd Annual which will be February 23rd 2014! Seems so far away, but I know will be here before we know it. Thank you all for coming. We hope that you had a fantastic time. We hope that we see you next year.

1 Week to go! More Cool Details and Oh My Goodness It’s Next Sunday!

From Kate:

You know when you have been looking forward to something for so long and then you come upon it and you think, “oh my goodness” it’s like next week. I am having one of those moments. No several, I’ll be honest.

Before I get to any new details, I want thank some people and companies that have just been so generous with either their time, hard work, monetary donations as well as in-kind donations, logistical help, you name it. I would like to thank our GOF board for all their hard work. Sunday will be the BIG day, but along the way we have all taken on responsibilities and I want to thank all 4 of you and 1 far, far away who has still made an impact. Thank you Stacey, Mark, Takoa, Sarita, and our temporary Aussie, Morgan. I would also like to thank our volunteers now who will be helping us in all kinds of ways on race day. You will be pulled in all kinds of directions, but I know you will all do a great job. It takes a village to accomplish an event like this, so many thanks to everyone involved.

This past Saturday we stuffed 1,000 goody bags. These goody bags will be going to all the registered runners/walkers. I want to thank the crew that came out to stuff so incredibly quickly. 1,000 bags is not an easy task and you guys did awesome. It was early in the morning and you were there ready to go. Thank you.

There are a couple really cool coupons inside the goody bags I think you should be aware of and save:

-Crocker Art Museum 2 for 1

-California Museum 2 for 1

-Joe’s Crab Shack will be putting on a fundraiser for us on March 7th. Keep the coupon when you go and 10% will go directly to Getty Owl Foundation. 

It has been nice to have a year under our belt. Certain things that stressed the heck out of me last year, seem to be no big deal. I hope that means it will be even smoother this year. 🙂

Some cool additions this year include giveaways at our 1/4 mile kids run. Before the run we will be giving away family 4 pack tickets to:

Sacramento Children’s Museum

Sacramento Zoo

Fairytale Town

Disneyland

* All pre-registered kiddos for the 1/4 mile run will be entered, so since this email is coming out now, I have a total of 64  kiddlets who will be able to win any one of these cool prizes. I would like to thank each company for donating their tickets.

After the 1/4 mile races are over, each child will receive a really cool ribbon. Our way of telling you how awesome you are and to encourage you to run another race in the near future. Running is fun and if you can run with Dinger, how much better can it get. 🙂

This year, we are changing from cotton to tech shirts. Very excited about that indeed. I love running in tech and I hope you all like them as well. I want to keep the image a surprise, but I would like to thank you Honey Agency for the awesome design. I would like to thank Kellie from Capital Road Race Management and Julie from NorCal Ultras.  I have learned so much from the two of you and I look forward to putting on another great event. Our 5am set up time is a killer, but it is well worth it.

I would like to thank all of the sponsors that have really stepped in to offer manpower, donations of all kinds, and support to the Getty Owl Foundation. For our second year, so many of you have stood by us and I cannot thank you enough.

Medals for all age group winners and awards for overall winners of both men and women will be awarded with special gifts. I was going to have this also be a secret, but why not, here are the medals. 🙂

Who will walk away with one of these beautiful ladies?

Our post-race festival will be terrific. Bigger and better than last year. Here is a list of vendor booths that will be there to support the Getty Owl Run/Walk. Click HERE! You will have a great time. Stay, hang out, eat, linger, meander, and enjoy the day. 

We will have our Getty Owl Foundation booth out there front and center. Stop by to learn more about SMA. Pick up information cards. Spin our wheel for fun prizes and finally we are organized enough this year, that we will have shirts, sweatshirts, hats, bottles, etc. for sale. It may be too late to buy your GOF gear online to have it for the race, but we do have a shop online as well. Prices will be cheaper on race day. Stop by and pick up some Getty Owl gear to help us spread the word.

I peeked at the registration numbers tonight and we have increased since last year. My hope is to hit 1,000. If the trend continues my wish just in fact my come true. Can you imagine 1,000 people coming to participate, learning about Spinal Muscular Atrophy, and having a great day enjoying time with family and/or friends on a non-rainy day. Oh, I already looked, no rain. 🙂 I am getting goosebumps.

Today, prices for registration have gone up. 5k and 10k have gone up to $37 and the 1/4 mile kids race will remain $15. If you have not registered yet, click here to do so. You can also register the day of and still be timed, which is cool.

Before I forget remember you can pick up your registrations before and the day of the event. If you want to get them early stop by Fleet Feet in Roseville. Click here and scroll down for time and days.

It has not been easy to take a step back and just enjoy the moment, but I certainly will try on Sunday the 24th. I look forward to working together to put on a great race and overall day. I look forward to seeing some very special people in the crowd. Many SMA families will be there in support and I am so looking forward to giving and receiving hugs. This day would not be complete without having Miss Getty and her daddy there to celebrate the day. All of this is for you my dear. All of it. I love you.

Getty Owl Foundation on Forum! [Listen]

From Mark:

Kate is raising SMA awareness in a podcast interview on Forum, Sacramento’s Digital Town Square! [Click to listen]

Kate isn’t able to get out very much, being a wonderful mom to our Little Owl; but when she does, she really makes it count! I am so proud of her for all she does for Getty, for Getty Owl Foundation, and for the SMA cause.

Thanks so much to Forum, Patrick Kennedy, and Isaac Gonzalez for inviting us, helping raise awareness of Spinal Muscular Atrophy, and your contributions to the Sacramento community.

There is a Story Behind Every Picture.

From Kate:

Thursday was no different from most. I got up early to get some things done for the run. Getty awoke from her slumber a couple of hours later, only to yell at me all the way down the hallway that the princess has awoken. I wait patiently for my 3rd cup of coffee to be done, so I can scoot to her room.

I get there to see some big blue eyes looking back and a morning squeal. Mama loves those squeals.

Our daily routine now has included Tinkerbell. Any Tinkerbell movie will do, but she has grown profoundly accustomed to these movies than others. Before she wouldn’t care what was put in front of her. Now she knows exactly what she is watching and when to giggle and when to sigh, etc. My little girl is growing up.

Since birth we have slept together. She has always been on my left. It is like we are an old married couple that have our routines even in the bed we sleep in. I know exactly when she needs to be repositioned. She knows when I am faking sleep, because she chats at me. I know when she is falling asleep because she makes the most subtle of sighs which tells me the time has come.

In the morning before we get the day started we do her first of three breathing treatments. They are spread throughout the day. Each treatment lasts about an hour. It consists of suctioning, a cough assist machine, a nebulizer if she needs it, a chest percussion machine that shakes everything up in her lungs, so hopefully we can get her airway and lungs nice and clear for the morning, etc. There are sets of things, brush teeth, etc, etc.

Anyway by the end she is dry, clear, clothed, and ready for the day.

I do my best to keep as much variety of play activities in the house. Today I thought it would be fun to draw. I had set up the coloring easel, her PVC pipe arm sling contraption was in place and all I needed to do was scoot her in and “we” could draw. put her arms in her slings. Asked her what color she wanted to draw with and then I picked one for myself.

What transpired was heartbreaking, scary, and  incredibly magical.

Getty started to cry. I mean like cry to the point of desating her O2 into the low 90’s. And her heart rate went up into the 150’s. For perhaps non-SMA families this may not mean much, but for us and for me at that moment I was calmly freaking out. Mark was not here. I was on my own to “fix” this. So you go into triage mode. Suction to get rid of the secretions so she does not choke or aspirate on the saliva. I had her cough assist ready just in case I needed to simulate coughs to really get down onto her lungs to pull up anything that may be down there. I talked calmly to her to see if I could get her focused on my calm voice and reinsurance that everything was okay.. Was she hurting  Did I do something when I transferred her to her portable chair? Did she have an ear ache. checked her ears. Did she have a temperature? I checked, no, wasn’t that.

I finally figured it out after I left the marker in her arm sling and moved out of her view. She just wanted to draw by herself. The tears dried, the coos came back, and her sweet little hand swung like she was flying like a bird.

I just sat there and cried for awhile. My baby was fine, so the adrenaline of the feeling of emergency was slowly leaving my body but filling it with extreme exhaustion. But I was mostly crying because she is a little lady and she does deserve her special space to create on her own. Granted it may not be the traditional sense of the word, but it is her’s and at the moment she needed mama to step back. I was so proud of her and I was also sad that she was getting older and that she didn’t need me to hover.

Her final work was an absolute masterpiece.  I could tell that after she was done and I  peek around to see her face, she was full of confidence and ready to show it off. 🙂 I am so proud of her.

Here is Getty’s masterpiece.

After I left her view I videoed Getty creating. There is a point in the first video that she stops for a time. I originally thought she was finished drawing but at closer look, I realized that she was keeping her marker on the page longer to make color circles. So smart.

My girl is growing up and now I need to continue to learn more aspects of her as a whole so I can help her grow in as many ways as she wants. I am a lucky mama.