Getty Owl Foundation

Guest Post: Teagan Interviews Getty

From Kate:

Almost 2 months ago, Rici Reid from Teagan Tales, ran a half-marathon in honor of Getty and her sweet friend Sophia. While Rici trained for the run, she obtained donations and those donations ultimately were graciously given to Sophia’s Cure. Since the run, Rici and I have remained in touch and I can say that she has turned into a dear friend. Her dear Teagan just turned 1 and she is such a sweetheart. I asked Rici to be a guest blogger today so you can get to know her and to also read the interview between Teagan and Getty. Thank you so much Rici!

Hi there! I’m Rici, the mommy blogger over at Teagan Tales.  I came across Getty’s blog by what I’d call divine intervention.  I can’t recall how I came to the blog but I can remember that as soon as I poured over the entries and information I felt an instant connection and need to help spread the word about SMA.

Over the last few months I’ve grown very fond of Kate and sweet Getty Owl.  I’ve “introduced” Getty to Teagan and Teagan has developed a sweet fondness for Getty and considers her a new favorite friend.  Basically, Teagan and I have become quite fond of Getty and Kate.  A week or so ago Teagan “asked” if she could interview Getty for our blog and both Kate and I loved the idea so Kate and Mark helped Getty answer Teagan’s questions.  It’s a super sweet friendship that Teagan and Getty are developing and I can’t wait until they meet and watch some cute owl cartoon in their tutus.

The interview was posted on our blog but Kate and Mark asked if we would share it on Getty Owl’s blog as well.

Hi Bloggy world!

I’m Teagan.  The one my mom tends to talk about a LOT on Teagan Tales.  My mom “met” Getty and her family first and introduced me.  Now Getty and I are friends.  My friend Getty has a disease called SMA (Spinal Muscular Atrophy) which is what she is “known” for around the internet.  I don’t really think about that part when I think about my friend.  I think about, well, my friend Getty.  I wanted you all to get to know her too.  So, I asked my mom to type up some of my questions and Getty’s mom and dad helped her answer them.  Neat questions like her favorite color and why she is called Getty “Owl”.  Also some kind of important questions about SMA and what it’s really like. One of these days I hope to get to see Getty in person.  I bet we’ll both be wearing tutus and cuddling up with our stuffed animal owls while watching a funny cartoon together.  Because you see I love owls too.  That might be another reason why we’re such good friends!
Well, I’ll let you read the questions I asked and the answer she gave now.
Love,
Teagan
1) Why do your mommy and daddy call you Getty “Owl”? Because when I was born, mommy thought I had a wise old soul. I didn’t fuss, I didn’t complain, I was happy to be here. Mommy and Daddy taught me how to “hoot” when I was two weeks old and I have been hooting ever since. I have big blue eyes like an owl.
2) What is your favorite color? Blue, like my eyes.
3) How many owls do you have? I have over fifty friend owls in my room. We talk all the time.
4) What is your favorite book? Mother Goose Nursery Rhymes, my mommy reads it to me every night.
5) What is your favorite thing to do with your mommy? We like to talk about all kinds of stuff.
6) What is your favorite thing to do with your daddy? We like to sing together. Daddy sings me songs all the time.
7) What is SMA? It is something I was diagnosed with when I was even smaller than I am now and it keeps my muscles from getting strong. But it also means I get lots of extra special love and attention from my mommy and daddy.
8) How do you eat exactly? Can you taste stuff? I get to eat through a tube in my tummy. Mommy let’s me suck on fruit once in awhile and I like that.
9) How do you take a bath? Mommy and I take baths together. She holds me while I get to move my arms and legs around. I like when mommy moves me back and forth in the water, I feel like I am swimming.
10) What is your “brother” like? Cooper is always around making sure I am safe and happy. He licks my face all the time and it makes me giggle. He also likes to cuddle with me.
11) Do you have a favorite doctor? Dr. Givant, she is silly and she always makes noises with me.
12) Are you scared when you have to go to the hospital? No, not at all. All the doctors give me lots of attention and they take good care of me.
13) What kind of music do you like? I enjoy when mommy and daddy sing to me and I also like Edith Piaf. I don’t know what she is singing about because it is french, but I always sing with her.
14) What do you want people to know about SMA? I want people to know that with enough money for research, it can be cured.  Even though I have SMA, I am a happy girl who loves to live every day right next to my mommy and daddy.

Meet Team Getty Runners: Kristi

From Kate:

I seem to always be excited for Wednesday’s to come. It  gives me a chance to introduce the world to some amazing warriors that are willing to put their running shoes on to train for a marathon in honor of our little Getty as one of the Team Getty Runners. Today’s runner is an amazing mommy, without a doubt the biggest Duck and Dave Mathews Band fan and equally terrific wife. We are lucky to know her and her family. Tonight I want to introduce you to Kristi Carichoff.

Name: Kristi
Age: 35
Birthday: June 25
Favorite Colors: Green and Gold!
Hobbies: Family time, exercise, writing
Have you ever ran a marathon? No
Had you ever heard of SMA? Yes

I am happy to support the Mathany-Storm family and others who are battling this horrible disease. I am a lover of music (Dave Matthews, please), sunshine, the Oregon Ducks, and my cool little family. I work part time as a paralegal and have a great husband and 5 year old son. Go Team Getty!

Kristi, we can’t thank you enough for committing to helping raise awareness for SMA. Ever since Getty’s diagnosis you have been a warrior and we are simply humbled and inspired by your motivation. Hugs and kisses to Mr. Andy.

Oh Yeah … Diapers!

From Kate:

Monday, Getty and I went to her sleep study at the Kaiser sleep lab.  Mark was staying home to look after Cooper.

It was a routine overnight sleep study to monitor Getty’s breathing and other things while she slept.  They would measure all kinds of things, but the biggest issue was whether her bipap settings would change based upon the sleep study. Apparently, the monitoring equipment in the sleep lab is better for a full sleep study than the equipment used to set her bipap up in the PICU.

We established the January sleep lab appointment right before Getty’s surgery last November. We have been eagerly waiting to get this study done so we could learn more.

The appointment started at 7 p.m. About two hours earlier, Mark and I started packing for the one-night stay.

Now let me start by saying that although it is just a one-night stay, one night for an SMA family means so much more than you might think. I am going to make an assumption that for most parents, overnight packing for a child might include clothes, food, diapers, wipes, perhaps medicine, and some toys. I am sure I am forgetting something, but in my mind that sounds like a reasonable amount of “equipment” to get a little bugger through the night. Also, be aware that the sleep lab is not equipped like a PICU with all kinds of things; it’s basically just a bedroom with motoring devices in it.

So the packing began. We loaded up the suction machine, oral suction catheters, olive tip nasal suction catheters, suction power cord, suction carrying case, pulse oximeter, pulse ox power cord, pulse ox probes, Kangaroo Joey feeding pump, feeding bags, decompression tubes, feeding pump power cord, venting tube, Farrell bags, Trilogy 100 bipap machine, bipap mask, bipap power cord, humidifier, bipap tubing, cough assist machine, cough assist tubing, cough assist masks, cough assist power cord, stethoscope, Neosporin, Q-tips, thermometer, Tylenol, Miralax, feeding bottles, formula, PJs, t-shirts, pants, socks, blankets, toys, stuffed animals, books, iPad, musical seahorse, and baby wipes.

I stood in Getty’s room after what seemed like an hour and a half of packing and scanned the room. We have packed everything to protect her lungs, we have provided for her tummy, and we have packed toys comfort her. Have I missed anything?

Then I saw them. I had forgotten Getty’s diapers. Oh yeah … diapers!

I just stood there and cried. I was just overcome by how tired I was, I think. At that moment, I just wanted to be a “regular” mom who got to just fill a diaper bag with the bare necessities to get through a night. I felt envious of mothers who didn’t have to constantly think about whether their child’s sats would suddenly drop. There must be such comfort in not even thinking that could even happen. I wanted to be able to stress about just diapers out of concern whether she might wet herself, not forget to pack diapers because I was so concerned about whether her lungs were clear.

We packed up the car, we put Getty in her car bed, and we were off for a girls only slumber party. We got to Kaiser and Mark and I unloaded the goods. We set Getty up with a few episodes of Fish Hooks and she was snug as a bug. Once Mark left, the two of us hung out and got to sleep in the same bed. Quality snuggle time I tell you. The sleep study lady came in and put all kinds of probes on Getty’s body. Getty looked on in amazement as each probe connected to her body. Some were blue, some were green, and some were red. Some has adhesive backing, while others were pastey and gooey.

And like you would of guessed, Getty just rolled with it. She loved the attention. Bedtime was earlier than usual that night. We were in bed by 9 p.m. and asleep by 10. We got the wake up call around 4:30 a.m. and Mark was back to get us by 5 a.m.

We packed up our stuff and headed home. We got Getty back in her own bed as quickly as we could. We then started the process of disinfecting EVERYTHING.

We should hear soon how the sleep study went. More sleep studies to come.

Meet Team Getty Runners: Nathan

From Kate:

Well it is Wednesday and that means we introduce you to another member of the Team Getty Runners. This “non-exclusive, all human beings welcome of all ages and abilities, lover of Getty, willing to raise money for research, and ready for the challenge” group will be training for the December 4th CIM in Sacramento all year long. We can’t thank you enough for your commitment to our sweet daughter.

For those that are thinking you would also like to take the plunge, email us at gettyowl@gmail.com and we will get you signed up. To date we have over 40 runners. Awesome!

Our second week is dedicated to a young man named Nathan. Welcome Nathan!

Name: Nathan Wayne Horne
Age: 25 1/2
Day of my birth: July 3rd
Favorite Colors: Blue, Red, and Blue again.
Hobbies: Running, Reading, studying economics, drinking a lot of coffee, and watching movies.

I’m Nathan, and I am originally from Wisconsin. I just got out of the Air Force and a two-year assignment to Omaha, Nebraska. After all the excitement the wholesome cornfields of the Midwest had to offer I decided to move West and came to Sacramento. If you’re wondering why I chose Sacramento, it was done on a whim basically. Sorry if you’re disappointed with that answer. While here I’m going to finish my degree in Economics at Sac State while doing ROTC. I want to be a pilot, and rejoin the loving embrace of the military. Maybe the second time around they’ll send me some place exotic.

I started running back in high school, when I went out for Track and the Cross Country team. Back then I knew I wanted to run marathons, because I love challenges and 26.2 miles is a lot of challenge. The CIM this December will be my fourth marathon.

When I was very young I decided that I wanted to help people. I suppose it’s the sort of thing most people do when they’re children, and everything is so black and white. Children decide that they’re going to be absolutely good to each other when they grow up: they’ll help the poor, give away all their money, and invent great new things to enrich people’s lives. I was that way, but things have turned out differently than I planned all those years ago.

I’m a nice guy: I give money to charities each month, I’m friendly to people I pass on the street, and on the freeway I let people merge ahead of me. But I’m not the man I set out to be when I was young because I don’t give of myself. I don’t give my time to the poor, I don’t volunteer at local youth clubs, I don’t share my talents in the hopes of making things better for people the way I planned to when I was a kid. I don’t know why that is, although I suppose I must admit the biggest factor has been laziness.

Regardless of why I’ve fallen short I’ve decided it’s time to bridge the gap between the person I am today and the person I could be. That is why I am running on Team Getty 2011, and why I’m going to be hitting up everyone I know for donations to the cause. I’m done with laziness and good intentions. It’s time to take action. It’s time to live up to the challenge I set for myself when I was young.

I hope you’ll join me.

Thank you Nathan for giving us a glimpse into your life and we thank you for joining the Team Getty Runners. Getty sends you her official smoochies. Good luck to you in your training.

Golf Tournament Success!

From Mark:

It had been raining fairly regularly in the Sacramento area, but the weather was kind enough to let up for a day of golf — not for me to golf, but for those who do. My personal golf experience consists  of trying to avoid knocking holes in the side of fake castles and windmills. I ventured out to the Granite Bay Golf Club to thank other people for golfing, as their contributions and efforts were going to benefit little Getty and help find a cure for Spinal Muscular Atrophy (SMA).

When I arrived, I wandered around a bit, visited with some friends, and wondered if some of the golfers could get a DUI in a golf cart on private property. I then came across a sign posted near the course that said, “Winter Rules.” I figured whoever posted that sign doesn’t have an SMA child because SMA parents know winter does not rule. In fact, winter kind of stinks because of all the nasty bugs going around that kept Kate and Getty home during this event.  Once I got past this point in my head, I came to realize that the sign was more likely a statement about the game of golf than it was a proclamation of seasonal superiority.

I went inside and jotted down some notes of things I wanted to tell the dinner attendees. Tony, one of the chairs of the event, and Takoa, a good friend and event coordinator, came in and we hashed out the order of speaking. I was scheduled to speak at the dinner right after the presentation of a video featuring Getty and describing SMA. If I stayed in the room during that video, there is no way I could have held it together when trying to speak, thanking everyone for their generosity and support. I stayed out of the room until my time came, and I managed to get through my brief notes. Takoa made some wonderful remarks of her own.

Tony spoke beautifully for the cause. At one point, he asked the audience how many people had attended charitable golf tournaments in the past. Many hands went up. He then asked, of those people, how many had any memory of the causes being supported by those events. Only a couple of hands stayed up. I was amazed and a bit crestfallen. My spirits were immediately lifted when Tony drove the point home that if anyone takes only one thing away from this event, remember we are fighting to find a cure for SMA. It felt good because I think the message got through and this event would not lose its purpose due to  inattention or fleeting memory.

During the dinner, I felt so grateful to all those in attendance and all those who bid on auction items. I wrote some text messages back and forth with Kate, who was home watching Getty. I explained the event was going well, and she wrote back with her top concern, “Do you think people will leave the event talking about SMA?” I think they will, and that alone is wonderful.

We would like to take this opportunity to thank everyone for making the recent golf tournament a huge success!

We humbly thank the following for creating the event and selecting our little Getty Owl as the beneficiary:

• Marcus Marquez / L Wine Lounge

• Tony Glover / Golf & Lifestyle Magazine

We thank the following for coordinating the event:

• Takoa Stathem

• Stephanie Tomasegovich

• Chevas Rainer

Thank you to the following for hosting the event:

• Granite Bay Golf Club

Special thanks to the following and all the volunteers, staff, sponsors, donors, participants, and all those who supported the event in any way:

• Wells Fargo Foundation / Chevo Ramirez
• Matt Taylor

• Heather Giordano

• Jodi Brown

• Will Brown

• Jessica Holcomb / Sassi Salon

• Kaiser Engineers / Howard Stoll

• Justin Bierenstein / Roseville Mitsubishi Kia

• Brooke Tachibana / Tacos at the Turn

• Danny Burlando / El Pueblo Restaurant (Folsom)

• Sac Press

• Merrill Lynch

• Joaquin Ross

• Labor 4 / Matt Kelly

• Slamson of the Sacramento Kings

• Cary Tinker / Piatti Ristorante & Bar

• Lisa Ling

• Laura Ling

• Hoppy Brewing Company

• Chipotle

• Ruth’s Chris Steak House

• Zolcalo Restaurant

• Morton’s Steakhouse Restaurant

• Red Lotus

• Clubhouse 56

• Angie Bohannan

• The Kitchen Restaurant / Randall Selland

• Stacey Ball

• Andi Johnson
• Shea Smith

There may be some more thank yous to come. We are so very grateful to all of you for everything you have done to not only help Miss Getty but also to relieve some of the burden for others, raise awareness, and …

FIND A CURE FORE SPINAL MUSCULAR ATROPHY!