Getty Owl Foundation

This Saturday, Sacto MoFo! We Will Be There!

From Kate:

Sacto MoFo is a well known event and organization that “circles the wagons” with gourmet trucks full of great food and drinks for the whole  family. This Saturday from 11-7pm under the freeway on 6th & X Street.

Getty Owl Foundation’s booth will be there to distribute SMA information and giveaways. There will also be some of our GETty Crafty, craft vendors there to add to the event. Here is a sneak peek at some of their wares.

So come on by and stay for some awesome food and drinks, live music,  stop by our booth and give Stacey a “high five” and buy to your hearts content from some very cool GETty Crafty vendors.

See you Saturday.

Summertime!

From Mark:

Summertime is special for many people but especially so for SMA families. The risk of illness is lowered, and we can breathe a bit easier going out in public.

In summer 2010, Getty was diagnosed with SMA. In summer 2011, we ventured out to Monterey for a weekend where Getty caught a cold and ended up in the hospital for two weeks. We have been determined to make summer 2012 special for her. So far, so good.

FAMILY VISIT

My older brother and Getty’s uncle John, aunt Leslie, and cousins Rachel and Sarah drove up from Orange County to visit us in Sacramento. Getty had never met them before, and we were all so happy to see them.

We had a great time eating with Getty inside a restaurant, which is a big deal for us. The risk of illness always lurks in our minds in enclosed public places. We are on constant watch for germs and armed with sanitizer.

We had a great time touring Sacramento and Davis, having some poolside drinks, catching up, and spending time together. Mostly, we are so happy Getty and her extended family could meet face-to-face.

SAN FRANCISCO

We set aside a weekend to take Getty to San Francisco Zoo. We spent a Saturday at the zoo, and it was fun! Getty loved seeing a variety of animals and plants, and soaked up the cool fresh air. She especially loved the petting zoo because she could get right up close to the goats. She pet a legless lizard, a turtle, and saw a couple of owls. She got tired, so we zipped through the second half of the zoo, and decided to pass on the Australia, South America, and big cats exhibits.

When Getty was napping, I was frustrated and disappointed in the zoo trip because Getty had an opportunity to see kangaroos and big cats, but missed out. Then I realized I was projecting what I wanted onto Getty. The point is not what I wanted her to see but hat she went to the zoo and had a great time seeing the things she saw, even if she never saw a kangaroo or a tiger.

Friday and Sunday were spent packing, driving, unpacking, handling medical equipment, set up, take down  … a ton of work! It was a fine trip, but Kate and I were more tired after our “vacation” than before. Getty had a lot of fun getting out and about, so we’re happy.

INDEPENDENCE DAY

As I mentioned, last year at this time, Getty was just being discharged after a two-week stay due to a summer cold. As Getty laid in bed sick on July 4th, the best Kate and I could do for fireworks was to catch a few glowing remnants of fireworks that were just out of view of the PICU window. This year, we had our own fireworks show, and Getty loved it!

I told her George Washington lit some firecrackers and scared the British away. When the wind kept blowing out our matches, I told her that’s what happened at Bunker Hill. That’s close enough, right?

I’d say Getty has had a great summer, and it’s not over yet!

Can’t Hold Back, So Much Going on in the Next Month in a Half. Can’t Restrain!

From Kate:

Before I start on all the fun Getty Owl Foundation events, Mark will be blogging about our awesome trip to the San Fransisco Zoo and our 4th of July Spectacular in the next few days. So I wanted to sneak in some fun activities for everyone in the very near future. By the way, Getty loooooooves fireworks. 🙂

Okay so August is coming very soon. August is National SMA Awareness Month and we try and take every advantage we can to spread the word about SMA in our community and to anyone who is listening, really. 🙂

So I will go in timeline order:

Saturday, July 21st from 11-7pm under the freeway.

GOF will have a tent at Sacto Mofo. Have you been to one of their events? Holy cow you need to. Picture a whole bunch of gourmet food trucks. Literally a little bit of everything for your palette. Drinks, music and on the 21st, our GOF tent and handmade crafts.

2nd Annual Hoot the Grid

Saturday, August 11th from 7-9pm @ AJF Salon

We are so excited to put this event on again this year. Plans are pretty much ready to go. Here are the details  for the night. I truly hope you can join us. We will be doing the SMA Awareness Walk before hand from 5-7pm and then from 7-9pm we will hold our SMA Art Auction. We thank AJF Salon again for their generosity of hosting this year once more.

Complementary food, beer and wine will be served. Live music and a silent auction will also be a part of the festivities. All the art was created by people, families, and friends affected by SMA. While this is a very emotional night, it is also a night where we celebrate the lives of so many gallant warriors and angels. We celebrate the fact that we will all fight to end SMA. SMA can affect anyone and this night is to make people aware that this is “our” fight as a community, not as a isolated population. So come on down and have a great time. As always it is open to the public.

SMA Awareness Night @ The River Cats

Saturday, August 25th

The River Cats have been so great to us. They are so generous to give us one night to celebrate SMA Awareness Month. Can you imagine having one night of a a captive audience to help educate people about SMA? I have goosebumps. Here are the details. I hope you can join us. You can buy tickets directly online, which is an easier option then we did last year. Let’s help pack that stadium and show support for The River Cats and SMA Awareness.

Tell 6!

Last year, while on my 5th cup of coffee I thought of Tell 5!. The idea was that I would send out a packet of 5 SMA Fact Cards along with 5 GOF bracelets to anyone that wanted to spread the word. It was a big hit. I mailed about 600 cards and bracelets. I got great feedback from people who received them. They told me really cool stories about their experiences of educating people about SMA.

So I am doing it again this year! And I am going to be very original and innovative and call it, Tell 6!. 🙂 So same idea as last year. I don’t care where you live, I will mail you out a package. All I ask is that you pass them out and educate 6 people. And double high five if you can get someone famous to educate. 🙂

So contact us and let’s spread some SMA education.

Lots going on and lots to do. We thank you in advance for your support. If you cannot attend any of our events, I only ask one thing of you. On August 11th at 8pm we light a candle for all of our SMA angels and warriors. If you can, we would greatly appreciate the effort and support to light a candle.

Thanks again.

It Is Amazing How Much Can Change In A Year.

From Kate:

In a moment of reflection today, I was thinking about where we were and what we were doing a year ago. We had been held captive at Kaiser Roseville, which seemed like forever. Getty’s health,  while at first was such a roller coaster ride, later became a matter of days before she was going to be able to “bust out”. She was graceful and kind and the strongest little soldier I had ever met. I feel like in certain respects, I learned more about my daughter in those two weeks than I ever had in her entire life. She was so steadfast and confident. Her eyes told me everyday, “Mom, don’t worry, I got this”. I put my trust in her and in pure Getty style, she fought her sickness off with intense force and determination.

Mark and I were exhausted to say the least. We were initially ill prepared to fight with the PICU staff for not only best practices, but following SMA protocols. When we left the hospital, our skin was thicker, our minds were focused, and our determination to keep Getty healthy, so we did not have to come back here was the goal.

The 4th of July was quite different last year as it will be tomorrow. We had a tiny window to look out of that night from her hospital room. We saw a glimmer of light here and there, but nothing spectacular as a full fledged fireworks show.

So we look forward to being together as a family tomorrow night and we hope everyone that celebrates the 4th of July does as well.

Getty is healthy and happy and she continues to teach us far more than we could ever teach her. So today I took a picture of her one year later. She is now 27 months. Knock on wood, we have not been back to the hospital and we hope to be blessed enough to not be going anytime soon.

And this is just what I love about Getty. She is healthy, happy, spunky, and sassy. She is watching Sesame Street, so at this point I do not exist. 🙂 And she has been gracious enough to allow me to take this picture without yelling at me to get out of the way. Ahhhh pure bliss. Life is good.

Happy 4th of July. May you celebrate with those you love. And if you are nerdy like we are, you will be reading the Declaration of Independence in its entirety and out loud  as we do every year. 🙂

The Beauty of 27!

From Kate:

Since Getty’s 3rd month of life our family was introduced to an amazing lady named Morgan Saunders. She is the kind of human being that understands love and commitment. Ever since she has been taking pictures of Getty, they not only have formed a bond, but we feel like Morgan is a part of our family. She has been with us through the good time and those times when we had no clue how much time we had with Getty. She has remained ever so kind and gentle with Getty and I know that Getty’s love is mutual.

Yesterday Morgan took pictures of Getty’s 27 month pictures. I know it is a little unorthodox to take pictures at all kinds of random months, but that is our life, unorthodox.

After each photo shoot, I simply cannot wait to see what comes of all of her pictures. And without fail, Morgan finds a way to capture Getty’s zest for life and personality.

Here are a few:

Oh our little lady is growing up so fast and so beautiful and as usual, we are just in awe of her spirit. We have shared 27 months together.

Inventory:

Estimated days spent snuggling together and counting!

Naps: 820

Slumber parties: 820

Estimated amounts of books read and counting!

15 x 820= 12,300

Time cherished and counting.  😉

Our beloved Morgan has chosen to study abroad in Australia for an entire year, starting in July. We will miss her so very much and I know Getty will miss her big sis for sure. Don’t worry Morgan we will ALL be here when you get back and ready for another photo shoot. We love you and your experience in Australia will be such an enriching experience. We know that you will exude love and cherish all who you meet there. Safe travels our friend. And if you can, bring home a kangaroo for Miss Getty.