Getty Owl Foundation

Sacramento Radio Contest – Internet Votes Needed

From Mark:

A Sacramento radio station has a Baby Idol (cute baby pic) contest. Grand prize is $1,000.

If you want to vote, it needs to be done today, Thursday, January 27, by 9 pm Pacific Time. You need to click to get into the voting area and register though.

CLICK HERE TO VOTE!

Thanks!

Meet Team Getty Runners: Lisa

From Kate:

I wish Getty could type this Wednesday’s Team Getty Runner profile. She is laying right next to me and I can tell she is just fascinated by how my fingers hit the keys of the laptop. Getty is also chatting it up as if to tell me what I should be typing. How did I become her personal secretary? 🙂

Remember signing up to be a Team Getty Runner is easy. Just email us at gettyowl@gmail.com and we can get you signed up. All abilities welcome and remember you don’t even have to run the entire thing, you can grab a few friends and run the relay.

Tonight I give you Lisa.

Name: Lisa JoMarie Beckman
Age:38
DOB: 9/25/72
Favorite Colors: Forest Green
Favorite Hobbies: Time with animals
Have you ever run a marathon: No
Had you ever heard of SMA? Not until my friend met Getty Owl.

I am a Christ follower who is compassionate towards people and animals. I was raised in a fun, loving family in Truckee, Ca. I have a beautiful 13yr old step-daughter who I love and admire. If I could live anywhere right now, it would be in an RV with the freedom to travel around the country. I work at William Jessup University with some of the most compassionate, unique, and loving people I have ever met. I am honored to support the awareness of SMA. It’s the least I could do.

Thank you so much Lisa for joining the crew and running for Team Getty and helping to raise SMA awareness!

10 Months of Getty Spaghetti

From Mark:

Today is Getty’s 10 month birthday!

The days are getting longer, we are more than half way through RSV season, and Getty is doing well. She has one more Synagis shot to get, and we can’t wait for spring to arrive to take her around and show her more of the world than the freeway and Kaiser facilities.

We reduced her daily calories because she’s getting to be a bit of a chunk! Being able to gain weight and keep it on is a good thing for an SMA baby, but as with all things, there’s a limit. We increased her calories a few months ago and she had a huge growth spurt, blazing her way through some clothes sizes.

We increased her cough assist machine pressures, which probably makes it a bit more uncomfortable for her to go through her daily routines, but did she fuss? Not at all. I am so proud of our little scooter!

January has been the first month we have been able to be at home without any major medical worries since the diagnosis came at the very end of July 2010. In August, we were terrified with the brand new diagnosis as we struggled to climb from the very bottom of a steep learning curve. In September, October, and November, we were starting Getty’s collection of medical equipment and fighting our doctors about various protocols as we worked our way toward Getty’s G-tube and Nissen sugery in mid-November. In December, Getty was re-admitted to Kaiser Hospital to get her bipap machine settings done. Now it looks like we finally have a g-tube, a Nissen, and all the basic SMA gastro and pulmo equipment.

Best of all, we have a great deal more peace of mind. The time we spend together playing, singing, and hooting lacks that undercurrent of anxiety that has been so prevalent for the past 5 months. When I look in your beautiful blue eyes, I can afford to appreciate you more and more as my daughter without being so concerned as if you were a patient. I love singing, smiling, and playing with you every day and watching you grow and learn. I marvel at how your charming smile has inspired so many to do such wonderful things.

I love you, Little Getty Owl!

Happy 10 months!

Nappy Time

Nappy time!

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.