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BEEP, BEEP, @#$%! BEEP

From Kate:

What’s in a beep? A high pitched sound that is often a reason for alarm and gathering attention in its relentless efforts to ignite a sense of emergency. That is what a beep means to me. I do understand that there are a myriad of other kinds of beeps. Like for instance many cars have beeps to let you know when you have successfully locked your car, a microwave letting you know when your reheated coffee is ready for consumption, as well as your phone can also use their beep to suggest someone is texting you. A beep is also sometimes put in place of a curse word on TV. So putting a beep in a particular context can offer comfort and emergency. All too often in our world, a beep signal can offer frustration, emergency, and comfort all at the same time. It can be quite maddening. 

Getty has many devices that offer her all kinds of support. Truth be told, there is no way Getty would have successfully gotten to 4th grade without the immediate and long term support of these devices. But they also come with their own kind of distinct and maddening beeps. 🙂 Let’s take the Joey food pump as an example. Getty has been exclusively g-tube fed since she was 6 months old. In order to give feed her, we use this device to feed her safely and at the rate safe fro her to eat. There is a distinct series of beeps when the unit is turned on. There is also a very loud, high pitched beep when the internal battery is low and the unit needs to be plugged in. And then there is another beep for…….clogs. Those god awful clogs. Her diet consists of many things. Many, many things. In order to make sure she is getting all of the calories and overall nutrients in her daily diet, many ingredients need to be contained in the bag that hold the food and run through the Joey food pump. From trial and error, we have finally and successfully found the right liquid consistency to get through the day without a clog alert. A clog alert is a loud and consistent series of beeps that do not stop until you have manually stopped the beeping. Once the beeping stops the time for remedying the issue of the clog begins. Is there a crimp in the line? Was the consistency of the food just too thick? And then how did the consistency get thick when I make this food EVERY DAY AT THE SAME MEASUREMENTS? Was the bag just faulty? Is the unit on the fritz? Should I just ditch this effort to salvage the bag or should I sit and figure this out? But if this is just human error and it is a perfectly good bag, I need to just figure it out. I only get 30 a month and if I throw this out, how am I going to fix the issue of shortage in the inventory? Maybe manipulating the bag a bit and trying to get the line to unclog might work, try that first before you give up. Well that didn’t work, where are the extra bags anyway? The closet, it’s 3am and I can’t see anything and I am literally sleep walking, where is the closet again? If this second bag gets clogged as well, I am literally going to through this unit through the window! Beep, Beep, @#$!% Beep. Fail! 

I appreciate all of the beeps, don’t get me wrong. Without them, even while sleeping right next to Getty, I wouldn’t know if her food stopped pumping. I would have been alerted by the excess amount in the morning and that would be too late to help recoup what nutrients and strength she may have lost due to excessive fasting. Our kiddos, especially type 1’s, cannot fast more than a few hours. They aren’t physically capable like most of us. Our kids can’t just fast. They have to be consistency fed throughout the day to keep hydrated and full. So the beeps are major indicators for us to know that something needs to be fixed and being able to spring into action is so crucial, but man, I am human, and the beeping can drive a person crazy. It can leave a person conditioned for a particular beep, even outside of the home. 

I can’t tell you how many times I have been out and about getting some air, for a temporary change of pace, only to be overcome with worry or dramatic responses to a beep. Like for instance, a cash register, who knew that would offer a negative, almost dire feeling dread, like someone’s life held in the balance when sitting in line to purchase clothing, but it has. Old Navy, please change your beep, it sounds like an alarm beep on Getty’s pulse oximeter and I instantly assume someone is desatting in the store and no one seems to care. Yep, its bad! 

The grocery store isn’t safe either. There are beeps for price checks, registers, scanners, and heaven forbid a forklift reverses in Lowe’s. It is maddening. I think for many medically fragile families, beeps mean something fierce and even while doing the best you can to get outside, to breathe hopefully non-germy air, the beeps are still there and it’s up to you to remind yourself that it is seriously unlikely that someone’s pulse ox went off and their oxygen just plummeted in Sephora, or someone’s Bi-PAP beeped in Foot Locker to let them know that their internal battery is low and needs to be plugged in, or that while eating in Chipotle, someone’s suction machine battery just went out. Nope, we are all just going to have to realize that, “Life has beeps, lots and lots of beeps.” Not a bad quote for really any kinds of adversity. 🙂 

Hang in their families. One day at a time. And in our case, one beep at a time. 

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Father’s Day Giveaway Recipients!

From Kate: 

What a terrific group of dads! Thanks to everyone who entered their dad/husbands! You are all so lucky and fortunate to have such committed and loving guys in your lives. 

Getty cannot wait to celebrate with her special guy as well. Their relationship is unique to anyone else in her life. She seems to giggle just a bit louder, snuggle a little bit tighter, and beam from ear to ear when dad arrives.

Happy Father’s Day to all the extraordinary dads out there. Thank you for giving it all you’ve got. 

To the following dads chosen, enjoy your Kayla Jean Cookies! We hope you have a very special day with your family. 

 

Glen

        Daddy is fun and gives good snuggles!

 

Dad Davis  

      Makes me happy and loves watching robot, dinosaur, and superhero movies with me. 

 

James

Thoughtful and a super dad!

 

Chris

        Dad is amazing! He protects me, brings    me presents, and takes me to Disneyland! 

 

       Matthew

He is committed to us, brave, patient, and is truly amazing! 

 

Jon

    Supportive and always finds ways to make my life awesome!

 

Gene 

The “Gene if all Trades”! He is caring and so thoughtful. 

 

Tracy 

   Always supportive and always trying to make easier for our family. Always goes above and beyond for us.

 

 

Richard

Dad never gets tired and takes good care our family!

 

Kevin

He is our hardworking dad, master musician, and always takes time for us.

 

 

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Dads and Grads Giveaway!

From Kate:

I know right, another giveaway! Yep, there you have it. 

Before I move forward, I do want to promise that this summer will be full of Getty updates. Truth be told 3rd grade has raised the bar big time and by the end of the day, Getty is tired and so is this mama. This past year has been so wonderful and consistent. HUGE emphasis on the word consistent! There is so much to share and I promise I will get on it. Here are some upcoming topics:

-3rd grade and moving forward

-Nutcracker

-Christmas

-Spinraza

-Birthday celebrations

-Vacation Tradition

-Growing

-Running Chair 

 

 

But for now…….let’s get to the giveaways! 

Last year we celebrated Mother’s Day with a fun giveaway. Kayla, an amazing SMA mama, created some yummy cookie bouquets. 10 amazing SMA moms were each gifted an arrangement. 

So here we are in 2019, and it only seems right that the dads are next. Yep, dad it is your time to shine. Thanks to Kayla and her business, Kayla Jean Cookies, 10 awesome SMA dads will get their own SMA SuperDad Cookie bouquets. 

So families I need your help. Here is your moment to tell us all about your dad and how he is just the “bee’s knees”! 

Email us at hoot@gettyowl.org with the following information:

-Dad Name

-Your Name

-Address

-Attach picture of your dad. 

Please answer the following questions: 

-What is your dad’s superpower? 

-What qualifies your dad to be added to our giveaway pool? 

Details: 

-Giveaway deadline is June 4th.

-As always, Getty Owl Foundation serves the SMA community and will only accept those submitted entries. All dads will be considered for those who have SMA or care for a child/children with SMA. 

-One entry per SMA Dad.

-Recipients will be chosen at random. 

-Recipients will be announced on June 6th. 

 

 

Okay now for our NEXT giveaway! In years past we have offered giveaways for SMA children for beginning and end of the school year. This time we would like to acknowledge and celebrate those individuals graduating and moving towards your next step in your education. How awesome must you be feeling about your accomplishments and where this new chapter will take you. Congrats Grad! We are so proud of you! 

We will be giving away 4 iPad Getty Owl Foundation Packages. Here is a picture. 

Awesome huh! We hope this package can get you off to a great start. 

Please email your entry to hoot@gettyowl.org.

Criteria:

-Grad who will be entering any of the following levels of study. College, Trade School, Graduate School, Junior College in the Fall 2019 school year.  

Details:

-Name 

-Address

-School you will be attending Fall 2019. 

-Attach a picture of yourself. 

-One entry per individual. 

-As always, Getty Owl Foundation offers support and resources to those in our SMA Community. Only those affected by SMA will be considered for entry. 

-Deadline for entires is June 4th.

-Recipients will be chosen at random.  

-Recipients will be announced June 6th. 

 

Alright, that’s it! Get your entires in and we will be back on June 6th to announce the recipients of the SMA Super Dad Cookies and Getty Owl Foundation iPad packages! 

Good luck to all! 


 

 

 

 

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Ear Pillow Recipients Announced!

From Kate: 

Truth be told, I love giveaways! I LOVE THEM! I am so thankful Getty Owl Foundation has the ability to gift items to our SMA community. Knowing we are able to find ways to offer support to families just like us is serious therapy for me. 🙂

I know all too well how a day can start out wonderful and change in an instant when your child is in need of something life threatening. It is jarring and it only takes a second to change your child’s life and your weary heart as a parent. So while our giveaway was just for an ear pillow, it is a lot more than that. I remember when Getty was younger, we were given a gift of an ear pillow and it meant the world to me. It meant Getty would be more comfortable sleeping at night. It meant someone out there in the universe had thought about the special need our daughter had and filled it. It gave me some calm assurance that there were other SMA human beings out there that may be walking a similar path. 

Terri Taylor and Nancy Boman, this what you both offered to our SMA community. Thank you so much for filling a need to so many. We can’t thank you enough. 

Here is a list of our Ear Pillow Giveaway recipients:

Aurora

Jericho

Gavin

Kristen

Samuel

Constance

Ryan

Alethea

DeAnn

Elizabeth

Aubriana 

Ember

Brett

Mateo

Claire

Emma

Nick

Kennedy

Jaci

Kate

Jayke

Isabelle

Kaitlin

Caitlin

Jackson

Isaac

Nawai

Gracyn

Emma

Armani

Killian

Charlie

Kaige

Tina

Wyatt

Andrew

Leah

Elliette

Emmett

Victoria

Sheyenne

Ariane

Lincoln

Wade

Haley

Elliot

Samantha

 

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Ear Pillow Giveaway

From Kate: 

I would like to start by saying, the SMA community is one of ultimate support. We all find ways to help each other. Mental health, care strategies, sharing personal testimonials, offering a supportive ear, making gadgets, building ramps, sharing supplies, suggesting positional aides, etc. This is an incredibly short list on how SMA families have found ways to lessen the load and care for each other. While it is true that we all know our kids better than doctors, having fellow SMA virtually to lend support is like having an extended family around the world. 

I would like to thank two individuals who came up with an amazing giveaway for our community. The idea was to make and giveaway ear pillows like the one Getty is using in this picture. Ear pillows are such a game changer for kids and adults. Speaking from our experience, Getty cannot use regular pillows because they smoosh her ear. Because she is non-ambulatory, she doesn’t have the ability to move her head and so a smooshed ear can not only be uncomfortable but it can also cause pressure sores and skin breakdown.  Ear pillows have a hole in the middle, so her ear is clear from any pressure. They are so amazing! 

These two amazing people saw a need in our community and they are filling it with this giveaway, Getty Owl Foundation is just a vehicle for distributing the pillows. 🙂 Please join me in thanking Nancy Boman and Teri Taylor. 

Thank you both for finding a way to make a difference for our loved ones. Thank you for you time and resources to make 50 ear pillows! We are so thankful for your willingness to help others. 

Again, I know this goes without saying, but this giveaway is for the betterment for all persons living with SMA. Thank you for understanding. 

For those interested, email us at hoot@gettyowl.org:

Name

Age

Address

Attach a picture of you or your family member so we can make a collage with all of the recipients. 

These is no deadline. Once we hit 50, I will update this post to announce the recipients. 

 

 

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