Getty Owl Foundation

Houston, We Have Liftoff!

From Kate:

The benefits of a stander are as follows:

• Increases bone density
• Improves digestion
• Psychologically beneficial
• Builds endurance
• Gives a person a better chance of exploring the world.

So here we are in January and, without going into too much detail, Getty is finally able to use her stander. We are absolutely beside ourselves with happiness. Getty thinks it is cool, too. 🙂

Some of the roadblocks we met along the way that slowed, halted, and snail-paced this opportunity for Getty were:

• Doctors not convinced SMA Type 1 kids could tolerate being upright.

• Insurance denying the payment of the stander.

• Waiting for Getty to be referred to and accepted by Shriner’s as a patient to recieve much needed TLSO (chest brace) and AFO’s (ankle braces) needed to safely use the stander.

• Getty getting approved for Medi-cal.

• Waiting to get Getty accepted into California Children’s Services (CCS) to be evaluated and to start the process of getting a stander.

In my imaginary world, all children with SMA are given all the needed supplies, machines, and equipment to assist to live a quality life.

What I am learning is that not all states, counties, and cities are the same with resources.  Some things we have received without any resistance is a full fight for another family. The opposite is true, too.  There is no rhyme or reason why some SMA families have to fight for X but not Y, and others must fight for Y but not X, and still others have to fight for both.

All of these roadblocks took months and months to unwind. Then in October, as Getty’s low bone density continued  to be a known problem, we just said, “Screw it! We are buying Getty a stander.” The paperwork, bureaucracy, and resources that fell just short from helping us acquire a stander for Getty left us so frustrated and exhausted.

Luckily, I was able to find a family that was selling their stander. I drove the four hours, there and back, bringing home a very special package for Miss Getty.  The Prime Engineering, Super Stander is now a permanent fixture in our home.

Purchasing the stander was just the first piece of the puzzle. Once we got the appropriate braces, we needed to figure out what incline degree Getty would tolerate. The process is very slow. Thanks to many SMA families, we were able to gain a wealth of knowledge regarding tolerance and pace.

As a mother, it was killing me to know that I couldn’t get Getty in the stander earlier. It is like knowing that there is a piece of equipment that has the potential to increase her well-being and health, and I felt like I had failed her. The resources around us were not willing to purchase it, or they were telling us that she would never tolerate it, or I was handed another form to fill out with no assurance of approval.

I am happy to report that Getty has been using her stander for the past month. Every day she spends about an hour and a half in it at about a 50 degree angle. She is also tolerating this incline without the need for bipap support, which really is encouraging.

At some point, our goal for Getty is to help her tolerate being completely 90 degrees upright. Slow and steady.

Princess Getty I presume.

Hanging out watching Little Mermaid. Ironically, to hold her arms in, we use an ACE bandage which resembles  … RED TAPE.

Knee braces & AFOs in stander and in pink tights. 🙂

A few nights ago, Getty and I chased Mark around the house. It was so much fun to push her around the house in her stander as we played tag with Daddy. She giggled as we got close enough to tag him and then we swung around as fast as we could to run away. It was a wonderful time and an everlasting memory.

Last Chance 2011

From Kate:

Since the end of year is coming quickly, I just want to remind everybody about our tax exempt status. We are a 501(c)(3) public charity and donations are tax deductible.

There are many worthy charities out there. If you are making a year-end charitable donation, please consider Getty Owl Foundation. Your gracious donation will help raise SMA awareness, assist families affected by SMA, and accelerate research to help find a treatment or cure.

If you would like to donate, click here or click Donate at the top right corner of our website.

Thank you and Happy New Year!

Merry Christmas to all!

From Mark and Kate:

We just wanted to wish everyone a very Merry Christmas. To all of our family and friends, we love you.

We wished about Getty’s 2nd Christmas and 21 month Birthday and here we are, as a family, spending this special day together. Santa, if you arranged this, well then we thank you. Of all of the houses you need to stop by to make kids’ lives better, you managed to stop by ours to give us the gift of time. Time will forever be precious to us. So let’s just assume that is our family’s forever wish, Santa. Make a note of it. 🙂

We wanted to share a special video Morgan made for our family. She came over Friday night to take holiday pictures. Morgan, thank you for capturing a very special night for us as a family. Reflecting on last year, it is clear that Getty is blossoming into a little lady before our eyes. What a blessing it is for us to witness.

Active 20-30 & The Rocks – One never stands so tall as when kneeling to help a child

From Mark:

In this season of giving, I would like to take a moment to recognize and thank the Active 20-30 Club of Sacramento (Club #1), Greater Sacramento (Club #1032), and my good friends therein.

When I first moved to Sacramento from Southern California, I didn’t know a soul here, except my good friend, Mike Rockenstein (“Rock”). I had known Mike since elementary school and we were good friends through graduation at Camarillo High, in the heart of California’s golden sun and dew.

Like many people, Mike and I drifted off to do our own things after high school. I went to Long Beach and San Diego while Mike went to San Luis Obispo and Sacramento. When we reconnected nearly a decade later, we picked up right where we left off. It was just one of those things where no matter how far separated you are in time or space, the friendship remains.

Mike and his now-wife, Jill Rockenstein, graciously took me in when I moved to Sacramento as I got on my feet. They also got me involved in Active 20-30.

The mission of 20-30 is to provide young adults with an opportunity for personal growth, friendships, and leadership development while improving the quality of life for the special needs children in the community. Over the years as an active member of Club #1, I held several titles and sat on the board of directors. I was engaged in many fundraisers and benevolent events to benefit Sacramento’s less fortunate children and families. I took part in distributing club funds to some wonderful local children’s charities. I also made some great friends in Active 20-30. The Club lives up to its mission extremely well.

When Getty was diagnosed with SMA in July 2010, suddenly, she was one of the special needs children and we were one of the local families in need. At the initiative of Mike and Jill Rockenstein, the local clubs pulled together and provided us help. We received some wonderful words of encouragement and support from friends in the clubs.

Further, the personal growth, friendships, and leadership development I gained through the club provided me the confidence and experience necessary to launch Getty Owl Foundation with Kate. My desire to start Getty Owl Foundation with Kate came in large part from my participation in Active 20-30.

As if that is not enough, thanks to Rock, Active 20-30 #1 made a generous donation to Getty Owl Foundation in sponsorship of the Getty Owl Run/Walk coming up on February 26, 2012, in Sacramento.

I am proud to be a past-active member of 20-30. To Mike & Jill Rockenstein, to all our friends and supporters in 20-30, and to Active 20-30 #1 and #1032, we are so very grateful for enriching our lives, supporting Getty and our family, and helping Getty Owl Foundation succeed.

Another good friend through 20-30, Greg Ignoffo, also secured a generous donation to Getty Owl Foundation through HMH Builders and Swinerton Foundation. Thank you, Greg, for your friendship and to HMH, and Swinerton!

Thank you, Merry Christmas, and happy holidays! Hoot hoot!

“One never stands so tall as when kneeling to help a child.” –Active 20-30

Getting In The Spirit

From Kate:

Reflecting quickly on last year, we had just kind of settled in after Getty’s G-Tube and Nissen surgery. We were trying to get a routine established, which, as any family would know, changes all the time. Changes for us are a little different. We needed routine on how to feed, at what rate to set the feeding pump, how to care and clean the g-tube and the skin surrounding it.

We were just introduced to the bipap machine last December. Bipap helps Getty rest so she doesn’t have to do all the work of breathing by herself when she sleeps. It doesn’t breathe for her, but it helps kick in and support her if she does need help.

Along with bipap, comes a lot of nuanced knowledge that seems second nature now, but felt like another mountain of education back then. What are the proper settings? How will we know if she isn’t getting the support she needs? What about her CO2 levels? How does she eat while asleep and on bipap with all of the air swooshing into her lungs? What about skin breakdown around her face over a period of time while wearing the mask? What if she doesn’t respond well to the machine, then what? And what do all the relentless alarms mean?

Again nuanced. Overwhelming last year, part of the routine this year.

Last year we had just enough energy to buy a tree, get some lights on it and find as many owls as we could for ornaments. Some people sent us some, which was incredibly sweet. But we were stressed, overwhelmed, and still pretty unsure in this journey. But there was Getty, in usual fashion, smiling as happy as could be.

What a peanut!

So this year has already felt a lot different. We don’t feel the crazy anxiety that comes with the unknown in terms of care, machines, fighting doctors, emergency and clean protocols. Our new normal is that all of those things are normal. We are just so incredibly thankful that our sweet owl is with us today so we can have a quiet and wonderful holiday season. We can start family traditions and we can be so thankful for more time with Getty.

So in keeping with that focus of starting traditions, we have made a few. Our owl Christmas tree has become very populated with all kinds of unique owls. I was in a store the other day buying another cute owl and the lady at the counter said, “Well it is always good to have an owl on your tree for safety.” I smiled, but I was thinking. “What if I told you I have 30 owls on our tree, does that mean we are Fort Knox?”

So here are a few additions to Getty’s tree.

So many different owls, it is a lot of fun to just gaze at them. Each in its own way resembles a part of Getty’s personality. We love it.

One tradition that we started this year is the Christmas Advent Calendar. Getty was not having it at first. The routine is I carry her over to it, Mark takes out the little Santa, then Santa gives her all kinds of kisses, and then we talk about how he was in a date and then he is moving to another date. Not sure how much she was grasping the concept of numbers and sequence, but she sure did love the Santa kisses. The first few days, she just kind of looked at us like we were crazy and now that we are further into the before bed routine, she gets all excited to be escorted to Santa. 🙂 Some nights we even get giggles.

The next one, I am not sure if it will make the tradition list. But we sure had a fun time making it. First, let me show the picture of what it was supposed to look like.

Easy enough right? WRONG! They trick you into thinking this “kit” will give you the ability to replicate this winter wonderland. 🙂 So my mom (grammy), Getty, and I created our own version. 🙂 Let’s just say that our house would not pass a housing inspection.

This house was made with a lot of love. I am only sharing the front of the house, because we used all of the icing to hold this skyscraper together and to decorate it. It is still standing today, so not too bad. We added the lights. 🙂 Getty was a big help.

Getty’s partner in crime, Richie Tenenbaum needed to snuggle Getty’s neck throughout the entire process.

Getty helped with the icing for the house. We had to get it off her hands quickly though, it started to harden and so her hand was almost in concrete. 🙂

Getty helped pick out candy for the house decorations.

And after a good hour of reinforcing, decorating, tasting icing and peppermint sticks, the house was complete. Getty did an awesome job.

Tonight we tackle decorating cookies. 🙂