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Getty’s Door To Inclusion

From Kate:

Getty’s academic journey has been a very exciting road. She is now nearing the end of Kindergarten and as I look back, she has grown heaps from the infant program to pre-school and now to kindergarten. She is academically ready for 1st grade. She is also knocking it out of the park socially. With the help of the telepresence robot called VGo, she is able to connect, communicate, and develop relationships.

Technology can be a great burden, but it can also be a welcome addition to a little girl that just wants to be one of the kids. This technology is giving her the ability, power, and independence to do so. We have had some incredible people along the way of Getty’s educational journey. Many have been here from the start and they were/are huge advocates in assisting with Getty’s needs and abilities.

A video was created last year by an amazing man named Larry Edelman that truly captured Getty’s pre-school experience. The hope was to offer counties, districts, teachers, advocates, parents an option for obtaining as close to inclusion experience for their child that may be homebound temporally or permanently. The video was a huge success and I tip my hat to Larry who was able to really capture Getty’s early experiences with the VGo and her classmates.

This past year Larry came back to do an update and…. well…..this video is amazing. I have no other words to say. Please watch, please share, and please keep in mind that education should be for all kids. True education, inclusive education regardless of special need.

Enjoy

 

*Larry, you are wonderful and a loving addition to Getty’s village. Thank you for your kindness and attention to detail.

 

Click below!

Getty’s Door to Inclusion on VGo

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What Would You Do If You Could?

From Kate:

Getty,

What would you do if you had no physical limitations? Would you squeeze me tight? Would you run and jump and skin your knee? Would you play in the dirt with reckless abandonment? Would you create constructed works of art? What would it mean to you if you had a day to just be what most kids get to experience every day? Would you kiss and hug us all? Would you dance? Would you twirl? Would you kick a soccer ball?

When I have days that feel sad or out of sorts, I have to be honest and say that sometimes these thoughts race through my mind and they hurt my heart.

But without fail you find a way, your own Getty way of telling me to calm my heart. You have an incredible way of telling me that those “things” are just extra. Those things, while they may sound and look fun, do not define what this life is about. What this life if about is this moment, this second, and nothing more. I look into your eyes and you wise demeanor tames my weakened heart. That twinkle tells me that all is and will be okay.

So I rejoice in what is beautiful. My heart feels full and content that you are such a happy kiddo and what life has and will offer is and can only continue to be spectacular.

“Now if you would just change my movie I would be a super happy kid. Mom, seriously you are driving me crazy.” exclaimed Getty.

Can’t dwell for long. Back to regularly scheduled life. 🙂

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5th Anniversary Getty Owl Run/Walk

From Kate:

It was my intention about a month ago to recap our 5th Anniversary Getty Owl Run/Walk. What I am learning more and more about life is that the best intensions sometimes don’t come to fruition exactly when you want them to. Luckily, with social media I was able to post all kinds of pictures and moments through Facebook and Instagram. It is so nice to have the ability to post pictures immediately while the event was taking place. It was so cool to see other pictures people posted as well. It was a happy day and it was such a treat to see moments captured from all kinds of people that day. Thank you for posting and sharing the day with us.

I would like to thank my friend Paul Le for taking some great pictures of the day. Every year is special to all of us for so many different reasons. The biggest reason is to have time to spend with our community and friends. Thank you Paul for spending your morning with us and giving us some incredible pictures of our amazing supporters.

BTW, Paul also is our creative spark every year with our event image, medals, and advertising. He is so creative and such a kind soul. 🙂

Here are a few:

5thAnniversaryGOF

Thank you all for coming. Thank you for bringing your family and friends to our event. While we put a lot of time and effort into each year, however, our Getty Owl Run/Walk is not possible without our community’s support. We broke our attendance goal this year and welcomed over 1,300 registered participants.

Because of our community, supportive businesses, and gracious individuals that believe in our cause, we were able to raise over $64,000 this year. In five years we have raised over $190,000 to help support families affected by SMA and help advance the progress of research to help find a viable treatment and/or cure for SMA. There is so much hope and we are just so thankful for being able to do something significant to help end SMA.

I look forward to this day every year. While it is a day to spread SMA awareness and drive home the knowledge of the #1 genetic killer of young children, it is also a day that we celebrate family and it is a day we celebrate our little girl.

Getty turned 6 on March 25th. Surrounded by family and friends, she blew six candles out on her beautiful cake and we celebrated. Each year both the run and her birthday gives us a chance to see how much our community loves and adores our little lady. We tell her that on the last Sunday of February she becomes our city’s honorary mayor. We know she loves the title and the attention. 🙂 What is most significant for us as a family is to see that not only is our run a place for fighting SMA, but it is a chance for people to see and meet Getty and to understand that regardless of diagnosis life is attainable and celebrated. Regardless of limitations, life is fulfilled and explored. Regardless of possible prognosis, there is always time for love and being present. Getty has helped open our eyes to what can be possible in this life. I hope for many at the run, you also got a chance to be bit by the optimism bug. 🙂 Life is such a gift and it is so powerful when you have loved ones near and adventures to plan.

Thank you all for coming and being present with us. Hope to see you next year at our 6th Annual Getty Owl Run/Walk on Sunday, February 26, 2017!

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Our Patient, Patient

From Kate:

 

Since the race time has yet to slow down. We all had a great time at the run, Getty especially. It is not often that we are able to get out during the cold winter season, but we always make an exception for that one Sunday in February. We have been lucky enough to have five straight years of beautiful skies. Albeit cold, but clear none the less. 🙂

Right after the race it was business as usual. Getty got right back into the routine of each day. School is 8:00 am-1:00 pm everyday. It is a full day and one that sometimes tuckers her out and sometimes just boosts her energy into a higher level after. It really depends on the day.

This past Sunday, Getty was feeling a bit off. She did not nap, which was not alarming, but she did seem tired and just spent. We monitored her and nothing really changed until later in the weee hours of Monday morning. She woke up around 3am and just did not feel good. Her nose was stuffy and she was uncomfortable. Her heart rate increased but her oxygen did not decrease at all.

Getty has not been sick since her illness back in June of 2011. Literally nothing! Nada! I wish I could put my finger on exactly why Getty has not fallen ill. I am sure there are a whole bunch of little reasons that make up a big reason. We have been fortunate, blessed, and honestly lucky that Getty has not gotten sick. We limit her exposure to people and places unless we are completely sure we are in as close to sterile environment as we can. So only outside locations. Not around sick individuals. We follow extreme cleaning protocols in the house, and adhere to extreme measures if someone in the house gets sick. Her diet gives her some great nutrients, immunity boosting, and overall comprehensive supplements that give her  a sporting chance to fight germs. She gets ample amounts of sleep and chances to relax and rejuvenate throughout the day. Getty receives two to three, one hour long breathing treatments that help support a healthy respiratory system and clear her airways. SMA is tricky. Once a child looses the ability to swallow and cough on their own, things get a bit complicated to say the least. We use several different machines to help combat increased secretions and the chance of aspiration. Suction, cough assist, percussion vest, and bi-pap are all vital machines Getty uses on a regular basis. If sickness is apparent, all of those machines become extremely vital to getting the junk out and keeping her safe and healthy.

We were not sure what type of illness Getty had, but we did know how to treat the beginning stages of any illness for the most part. Increased breathing treatments, checking temperature, monitoring heart rate and oxygen, administering antibiotics in the case that it may be bacterial, adding Motrin or Tylenol if uncomfortable, figuring out whether her nutrition needs to be altered due to the possible slower movement of digestion, watch overall mood, and try very hard to get her to answer yes and no questions. Since Getty is non-verbal and sassy (sometimes not the most helpful combination in situations such as this)), it is often difficult to obtain an answer from her. I knew by Monday morning that she was not feeling good. It is not often that she looks me in the face with such determination and focus to offer a yes answer to my question of whether she is feeling bad. I can’t tell you how much I appreciate the ability to read her. Her eyes told me everything. “Fix this Mom!” was pretty much written on her face. So off Getty’s entire village went to fight this thing with 100%.

One thing I learned from Getty’s illness and hospital stay in June of 2011 is that slow and steady wins the race. So I took that advice and vigorously fought this illness with patience and resolve. 🙂

Monday and Tuesday were full of breathing treatments, sleeping, medication, tons of liquids, and quite a bit of movies. 🙂 I kept Getty out of school (even though school is from home) I wanted to make sure she was getting healthy and not distracted by anything. I know she will be able to catch up. I just wanted to be able to monitor her progress, isolated from distraction. Illness can turn in a second and I wanted to make sure all of her machines were accessible if something were to change.

Today is Wednesday and Getty has been so incredibly patient and getting better slowly and steadily. We are still aggressively treating her illness and will until everything is back to baseline. She seems a bit more upbeat today then in past days. Her heart rate has significantly decreased to almost normal levels. Her secretions have changed a bit. They are not as thick as they were on Monday. Her temperature spiked to 102 on Monday afternoon and thankfully it decreased back to normal. Still giving antibiotics and will continue to for the next 8 days. Liquids, liquids, liquids.

I want to thank those that have kept little lady in their thoughts. Getty is a fierce fighter and she has really turned this illness around quickly. I know she misses school and we are going to try to tune in tomorrow if all things are looking good in the morning. Fingers crossed. 🙂

 

 

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Thank You Sponsors!

From Kate:

I wanted to take some very important time away from logistics and planning of our 5th Anniversary Getty Owl Run/Walk to thank some incredible sponsors. Without their support our Getty Owl Run/Walk would not be possible.

 

Thank you to our Platinum Owl Sponsors

sponsor-cafamilyfitness

sponsor-dutch-bros

mikuni
 

 

Thank you to our Gold Owl Sponsors

Active Men’s 20/30

Fleet Feet Sports

Frank Cockrell, CFP, CRPC

Loveall for Children Foundation Paul Le Designs

Zrokk

 

Thank you to our Bronze Owl Sponsors

 

Clif Bar

Del Rio & Carichoff, P.C. 

JScreen

KAIA Fit 

Medifast 

Nugget Markets

Sacramento River Cats

The Sacramento Bee 

Zen Martial Arts Center 

 

Thank you to our Copper Owl Sponsors

Atlas Disposal
Childtime Learning Centers
Downtown Grid
Four Stone Photography
Katz Business Law
Law Firm of Timmons, Owen & Owen, Inc.
Lowe Chiropractor
Road ID
A Tranquil Space
Timberlake

 

 

If you are not already a HUGE fan of these amazing companies…….I hope you consider it soon. They are not only supporters of our foundation and event, but they are also outstanding supporters of our Sacramento and outlining city community. Thank you!

On behalf of Getty Owl Foundation, we thank you all for your continued support and contributions you have all made for our foundation and community. Our gratitude is tenfold.

 

 

 

 

 

 

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