Getty Owl Foundation

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. 🙂

On Your Mark, Get Set, Go Getty Owl Run/Walk!

From Kate:

After the first of the year, we will really be pushing our upcoming event, Getty Owl Run/Walk. But for now I wanted to explain why we decided on doing this in the first place and what we would like to get out of it. After which my hope is that you believe this is an event that you and your family would like to participate in, and hence helping Getty Owl Foundation continue the work we are doing to help spread SMA awareness, helping families affected by SMA, and even more importantly, helping fund some amazing research right now that has the potential to turn this disease around.

First things first, I love to run. Running helps clear my brain, helps me figure out next steps in what would seem an impossible task. But sure enough by the end of a run I have a plan in place. Before running I used to walk. Walk to school, walk to the store, walk to the bookstore, walk, walk, walk. And the amount of walking I did, I had a plan to end poverty, create peace in my community, etc. It is amazing what a little exertion of muscle can do for the brain and the heart.

Having said that, Takoa and I were sitting in a Starbucks last December and we were brainstorming on what we can do for our community as well as help spread SMA awareness. So a run/walk race kind of floated to the top rather quickly. Since both of us are runners it seemed only natural that we stick to what we are good at. Having said that, we went to the natural next step, ” but there are so many races in Sacramento, how do we make this run distinct enough for people to come, enjoy themselves and really make a commitment to participate”? Our solution was give the community incentives for participating.

We first decided on working with the best of the best. Capital Road Race Management is a class act. We knew that our event would be well organized, we knew that their commitment to our community was respected and sought after. Every year they help manage, Run To Feed the Hungry that registers tens of thousands of elite runners, families, first time runners/walkers and everywhere in between. I was absolutely humbled by their willingness to partner with Getty Owl Foundation to make this first time event a huge success and ultimately make it an annual race in Sacramento.

So next step was to find businesses that were willing to come aboard and help support our cause. I can’t tell you how amazing it feels to have such an incredible group of companies that believe in our cause and are willing to put their name behind our fight against SMA. So far this is the list of awesome companies that have committed with support. Incredibly enough, the list will just continue to grow. I am still pinching myself, this is such a blessing.

So now is the big next step, how do we get people to register?

One of my absolute favorite movies is Field of Dreams. It started with a crush with Costner and then as I grew up the symbolism of the storyline just seemed to keep resonating with me.

If Mark and I just live as an isolated family with a beautiful daughter that happens to have SMA, we would live an incredible life. But for us this disease is bigger than us, this cause is bigger than us and it never felt right to live in isolation, when we knew there was an opportunity to let our community know that this SMA diagnosis does not discriminate. We felt like we would be doing such a disservice if we remained quiet.

So in keeping with the theme of the movie, the common phrase people often hear is, “if you build it they will come”. We have created an event for any age, any gender and any ability to participate. We have chosen a time of the year for those who have their new year’s resolution is to get in shape. February is a perfect time to make healthy decisions in life. The Getty Owl Run/Walk is the last race before the annual Shamrock Half-Marathon, for those that need one more long run in before March. The route itself is a breathtaking route down the Sacramento Waterfront. We have created a wonderful post-race family festival that includes activities for kids as well as adults. Food, vendors, giveaways, music, crafts are just a few of the awesome aspects of the festival. And in the process what you as a participate will be doing is helping us, Getty Owl Foundation continue our mission and reach our goals to fight SMA.

So on February 26, 2012 at Crocker Park we will hold the first of many Getty Owl Run/Walk. The 1/4 mile kids run will be escorted by both the Sacramento River Cats and California Family Fitness mascots. The 5k and 10k will be serenaded by several bands to keep you motivated en route. Lots of food and drinks will be awaiting your arrival at the finish line.

So the Getty Owl Run/Walk has been built with great care and detail. And now this is your chance to support and participate.

If you have ever wondered how you can help our cause, register and participate.

If you have ever wondered how you can help Mark, Getty or I continue to help find a cure for Getty and all of her SMA friends, register and participate.

If you have been reluctant to outreach to our family for whatever reason, here is your chance, register and participate.

Tell your friends and family that the last Sunday in February can make all the difference for not only our family, but for thousands of families both with SMA children and for families that will have SMA children in the future, since there is no cure ……….yet.

If you would like to learn more about the Getty Owl Run/Walk go here.

If you would like to register for the Getty Owl Run/Walk go here.

If you want to follow on facebook for updates on the Getty Owl Run/Walk go here.

On behalf of our family and the Getty Owl Foundation, thank you! We hope to see you there and we hope you have a great time.

GOF Featured in Dandelion Magazine

From Kate:

I was so humbled to get a phone interview with Melissa Abramovtiz from Dandelion Magazine back in September. Dandelion Magazine is the sister magazine to Sacramento Parent. Dandelion’s focus is on issues and needs of parents of children with special needs.

Since Getty’s diagnosis, I left many of the healthy parent blogs, websites, and magazines behind. I simply found it too difficult to relate and it was futile for me to try. However, when I first picked up Dandelion’s free publication, I was so happy to read about journeys of families with special needs children and topics I could instantly relate to. Even though they were not SMA families, it was still a comfort to read about similar fights with doctors, the need to learn about the best care possible for their child, and how to incorporate their child in a world that doesn’t necessarily make their environment accessible. Dandelion also has great resources and finds some great activities in the community for all to experience.

When I got the email and then phone interview about Getty Owl Foundation, I could not have been more excited.

Thanks to Melissa Abramovtiz for asking such informed questions about SMA. I could tell she had done her SMA homework. I was very impressed. 🙂

Go here to read the Winter Issue.  The GOF article is on pages 18 & 19.

Thanks to Dandelion and Sacramento Parent for making this article possible, this is an incredible opportunity for us and your readers to learn more about SMA.

Thanks also to the Willams Family for offering their input on the article and Stacey for saying some really nice things. 🙂

Both Sacramento Parent and Dandelion are both free publications in the greater Sacramento area. Pick one up if you can, both are very informative and helpful for parents.

Stranded on a Deserted Island for 4 Days

From Kate:

Our new normal seems to always have a “worst case scenario” attached to it. It is hard to be carefree because life can change in a moment, and it is better to be prepared than surprised. I don’t like surprises with regard to SMA. In our experience so far with this disease, a surprise comes when we didn’t do enough reading and research or we didn’t pack enough stuff and we are left without.

Which leads me to our latest project.

Some might call this an emergency bag, but we call it our “Stranded on a Deserted Island for 4 Days ” bag. The name kind of makes it a little less immediate and perhaps might invoke a sense of tropical breezes instead of hospital stay and smell.

This bag has everything Getty needs for at least 4 days. This is a bag we can pick up at a moments notice. We can feel prepared and secure that she will have everything she needs if we are to jump into an ambulance or our van to the hospital.

Of course this is not the bag any family thinks they would have to pack, but I cannot tell you how vital it was for us when Getty was hospitalized back in June. We were so prepared with supplies and food, etc. We were actually really overwhelmed by how many supplies and dietary items the PICU did not have for her.

Mark and I kept saying, “What if we didn’t have this stuff? What would we have done to help Getty?” It was a real wake up call for us for sure.

Since Getty’s PICU stay in June, Mark and I have stepped it up a notch and planned for a worst case scenario for 4 days; hence ,the “stranded on an island” theme. 🙂

Here is the bag. Since Getty is a little girl, it had to be pink and with a little bit of flare: the polka dots. The list of contents is always evolving, adding and subtracting, but here is the Deserted Island Supply List if you would like to see.

Then we have the “Stranded on an Desert Island for 2 Days” bag. This bag is what we take to every doctor appointment. It has two days worth of everything Getty will need. It is the same contents of the bigger bag, just smaller quantities.

As I was thinking about doing this post, I kept saying to myself, “Would anyone care about this topic”? Maybe, maybe not.

Let me tell you what my intentions were about writing about this subject. I have two. One, I wanted people to get an glimpse of what commitment looks like in the SMA world. SMA families are hard core, committed, and plan for just about every scenario there is.

We don’t want to be pitied; we just want people to understand that what would be a mere cold to a healthy child is trench warfare to a child with a weak immune system. If we have to lug a huge piece of luggage around, that seems like small beans to making sure our kids are well taken care of.

As a mother, this is what I have control over. I don’t have control over this disease, but I can plan for everything Getty might need, and that gives me a sense of peace. I remember when Getty was admitted in June to the PICU and the Intensivist sarcastically remarked, “Are you all moving in?” And we respectfully responded, “Yes, yes we are.”

My second point of writing this is to suggest to all families, whomever you are, perhaps we all need a “stranded on a deserted island” bag for our children. I am not trying to sound like an alarmist in the least. I am also not trying to suggest that your list needs to be as crazy comprehensive as ours. But what if families just put a little bag together and stored it away in a closet, so if a situation arises and you need to leave quickly, you will have peace to know that items of comfort, items of care, items of necessity are in a bag for your little one(s).

Enough with the soap box.

I just remember when Getty was first admitted, we busted out the iPad, she had her blanket, and her pillows and she had as much of the comforts of home as possible. As her parents, we had some peace that even though she was in a hospital battling an illness, she had some comforts from home along the way.

Team Getty Conquered CIM!

From Kate:

Wow, what an amazing day yesterday was. Sunday was the 29th CIM. It has always been in Sacramento, yet I had never been a spectator at the finish line. Wow, what a beautiful place to be.

I witnessed families cheering on their loved ones. I saw 80+ year old’s crossing the finish line. I saw groups of women in unified colors cross the line in a way in which they celebrated, convinced me that it wasn’t just about finishing this race. The impact of crossing together set the tone for me as a spectator that this was more than just a physical challenge, it was an emotional one as well.

I heard one lady tell her husband after crossing the line, “never let me run three marathons again in three months!” What? People do more than one in a year, I was beside myself. 🙂 I heard another celebration over to my right that touched me more than words. A man was running for a loved one that had died from breast cancer. I didn’t even know them and I was crying and feeling that strength within the entire group.

After they had left, I stood there with my partner in crime, Cooper and I thought, “wait a second, am I prepared for this?” Am I prepared to watch one of our Team Getty Runners run across that line?

Earlier I was able to celebrate with one of our relay groups. Takoa, Steph, Shea, and Linda had an awesome race and came in at a very fast time. It was great to talk about the route, give them lots of hugs, thank them for their commitment and willingness to support us and become a Team Getty Runner. Even the youngest member of our Team Getty members was there to cheer everyone on as well.

Way to go ladies!!!!

Miss Mady I cannot wait to see you run like a gazette at the Getty Owl Run/Walk!

So to answer the question, no I was not emotionally ready to see Team Getty Runners come in. There were thousands of people coming in from both sides of the street. I was only able to catch two TG runners come in. Two very important people in fact, and I am so glad I was able to find them in the huge sea of human beings.

One was an old colleague of mine. We used to work together at San Juan HS. We had not been able to keep in touch since she had moved, but I knew she was doing well and that she had two beautiful girls. When Liz joined the team, I was so humbled. It was so incredible for her to tell me that Getty was her inspiration to run these 26.2 miles. That is a lot to digest as Getty’s mother. I mean I can tell you how incredible she is, but when someone else tells me that Getty is their inspiration, well it is an amazing feeling. I caught Liz as she crossed the finish line and I just lost it. I called her over, we hugged and I just couldn’t stop crying. Such an emotional thing to hug a person who just ran 26.2 miles for my little girl and to help raise money to help my little girl have even more hope for a long life. Thank you Liz and thank you to your family for making this your weekend event. So, so great to see you.

Thanks Liz!

The mastermind of this entire Team Getty Runner/Walker Crew was the brainchild of our very own Morgan. If you want to talk about commitment, you need to spend a moment with this young lady to understand how much she loves Getty, how focused she is on the success of Team Getty, and who is committed to help end SMA.

This was Morgan’s first marathon and she ran the entire way. What a trooper and from the looks of the pictures she took along the way, it looked like she was having a great time and Getty Owl was with her all the way, even at the finish line.

I Run 4 Owl

7 Mile marker 🙂

And as Morgan approached the finish line wouldn’t you guess that she didn’t sprint through to the end, she slowed down and weaved back and forth as a flying owl and Getty Owl in hand. It was a memory I will have forever.

Morgan and Getty Owl in hand.

As I watched her fly across the finish line, the water works turned on and I couldn’t wait to give her a celebratory hug. What an accomplishment and yet just another challenge you have taken on and accomplished with grace, Miss Morgan. Well done!

What an amazing day. As a spectator it was remarkable to watch all of the runners come in, it is another to be a runner, so it got me thinking. I think I might try it next year. It would be such a wonderful way to honor Getty, like so many had done for her yesterday. Now I need to dust my shoes off or better yet scrub the dust off my shoes. 🙂

So all in all our Team Getty Runners have raised over $4,000 towards our goal of $10,000. We are getting there guys and gals. Let’s keep it up.

I have had so many people ask how they can become a Team Getty Runner/Walker. Easy, just email us at hoot@gettyowl.org

We will get you a shirt and you are an official member. We aren’t an exclusive group, but we do have one goal in mind, to END SMA. So if that is up your ally we would love to have you.

We would just like to thank every single member of the team for running the CIM this year, let’s definitely shoot for next year and races in between and let’s multiply our pack.