Getty Owl Foundation

GETty Crafty Holiday Bazaar

After much waiting, much planning, much figuring out…it is less than two weeks away! The GETty Crafty Holiday Bazaar! When we did our last show we realized that we wanted to move our event to the holidays. There is just something so magical about that time of year and we wanted to help support shopping local and spread awareness!

Months of planning and here we are, a week and a half off from the event! If you are in the Sacramento area please help us spread the word and come out and say hello! We have a ton of exciting announcements to make next week with regards to vendors and what you will find at the event so stay tuned.

For now…mark your calendar!

Saturday, November 17th

10am to 5pm

Tsakapoulos Library Galleria 828 I Street, Sacramento, CA

$5 at door, 5 and under free

Special Touches

From Kate:

Since infancy, Getty has laid by my side. I know it is “not” safe, but whatever. I chose to have my little peanut be right next to me in sleep. I wanted her to hear my heart beat, I wanted her to be able to feel me and I wanted her to feel “safe”. Fast forward, our sweet pea is 31 months and we still are roommates right next to each other. She hasn’t kicked me out yet, so I will remain by her side. Our bed is bigger, so we each have space, but if you found us in the morning, you would find us still right next to each other as we did when she was only days old. I love to snuggle with her and I believe she enjoys it as well, because she reciprocates with a happy coo.

Getty needs to be repositioned many times a night. That entails moving her body from one side to another with positioning pillows to ensure the most comfortable position. I have gotten used to doing this in my sleep. She has however ended up in some weird positions when I wake up. As I wake I look at her and think, “how are you sleeping like that.” But she fast asleep and so I slightly make some adjustments and she continues on in slumber.

My little girl is just that, all girl. It can be literally the middle of the night and I hear a loud coo. It is not a coo to tell me she needs to be repositioned, it is a coo to “talk”. Like as if we were having a slumber party and she wanted to stay up late to talk about “stuff. She giggles and coos and squeals. However mom (me) is looking at her with a look of slumber and I try my best to get her back to sleep. Sometimes it works and sometimes it does not. 🙂 I am not the most persuasive mother. I usually take part in the slumber party. Smooching her cheeks and squealing with her. It is such a special time with her that cannot be replicated during the day.

Lately, I found what gets her back to sleep and it can only be described at magical. I prop her hand against my cheek and she taps my check with all of her fingers. Somehow that soothes her to fall back asleep. I can’t explain how incredible it feels to me and to also know that touching my face soothes her back to slumber-land is an amazing feeling. Those special touches make this mama’s heart and soul feel complete.

The Halloween Costume Contest Results Are In………

From Kate:

First and foremost we would like to thank all of our contestants. We hope everyone had a great Halloween. The weather was a little shaky over here, so Getty didn’t go out to prowl the neighborhood. Hopefully next year.

We had so many contestants and it was so hard to choose the top 3. Excruciating to be honest. I get so excited for this contest and then when we actually have all of the pictures in front of us, we all just cave in and can’t make a decision because of the overall cuteness and creativity of them all.

Over 40 of you sweet peas entered and we thank you for taking the time and participating. We hope you can join us next year.

Here are the contestants:

UPDATE: Major fail by this mama. I missed a few kiddos. I am very sorry for the unintended  omission.You guys are all so cute, so sorry for leaving you out, didn’t mean to.

Believe me when I say, this was not easy. All 6 board members chose their top 5 and then we went from there. So without further ado…..here are the chosen costumes.

Kaige receives #1 place with his UPS driver and van costume. Way to go Kaige you will receive a $100 Barnes n Noble Gift Card.

2nd place recipient goes to Stay Puft Marshmallow. Little one you win a $50 iTunes Gift Card.

3rd place goes to Nick, and his rendition of an Angry Bird. You my friend earn a $25 iTunes Gift Card.

Halloween is a very fun holiday for us. As I have said in the past, even though we nicknamed Getty, our little owl, I truly tried to find something else for her to wear this year. But when I saw this costume I knew it was the one. I added a handmade cape made from an SMA grammy and we were ready to go. So here is our little super hero off to make the world a better place, before bedtime.

Happy Halloween everyone!

One Week Left Until Halloween Costume Contest!

From Kate:

I just wanted to write a quick reminder that our 2nd Annual Halloween Costume Contest is one week away.

Have all pictures emailed in by November 1st to hoot@gettyowl.org to be in the running for three really cool gifts for your kiddos.

1st Prize:

$100 Barnes & Noble Gift Card

2nd Prize:

$50 iTunes Gift Card

3rd Prize:

$25 iTunes Gift Card

Here is the first blog post I did on the contest if you would like to catch up or read about how things went last year.

We hope you take part in the festivities. The winners will be announced on November 2nd. We hope you all have a very fun and safe Halloween next week.

It is a tradition in our house to watch The Great Pumpkin Charlie Brown, maybe it is in yours. 🙂

My My My I Yi Woo! M M M My Tobii!

From Kate:

Okay I took some liberties from some lyrics from The Knack’s song, My Sharona. Fellas I hope you don’t mind. We have terrific news……..Getty was approved for the Tobii eye gaze system!

Yi Woo!

The possibilities for communication and learning are endless now for Getty. Obviously this is not the only means to which she will learn, but boy this is going to help immensely.

It has not been an easy road to obtain this piece of machinery. So in particular order I would like to thank a few organizations that made this happen. We would like to thank Kaiser for denying her immediately. You were swift to tell us that there was no way Getty would even be able to calibrate it at her age. (when she trialed it at the age of 2, she calibrated it and accessed the system immediately and rocked it!) But that is beside the point.:)

Our biggest thanks goes to both Yolo County Office of Education and CCS Yolo County. Ladies you all knew Getty had the capability and you also knew that treating Getty as an individual human being and not as a number is the right way to care for a child. I know you all love her as your own and I think that made all of the difference. The bottom line is, what is best for a child? You all collaborated so well and in certain respects, made me feel so at ease as a mother. I knew “it” was being taken care of and that I could trust it would get done. I can’t thank you all enough.

Spinal Muscular Atrophy robs a person of their muscles, faster or slower depending on the type. Getty is type 1 and she has little to no strength in her extremities. She lacks the ability to  independently care for herself or explore on her own without some kind of assistance. The other thing to remember about SMA is that cognitively, Getty is not impaired. She knows exactly what is going on, but until this point, lacks a way to express herself verbally. We cannot wait to get going on this system and can I say a little scared. She might just tell me what she thinks of me. 🙂

Think of all the very simple activities a 31 month old child can do on their own. They can explore their environment and from those simple activities they are learning independently. Emotions or medical needs perhaps can be expressed as well. Getty learns from what we teach her. She can choose between two or more things we choose for her. And even though she is learning about her environment, it is still with the aide of another. Medically can be a very scary thing as well. I would give anything for Getty to be able to tell me if her tummy is hurting or she needs something immediately. I know this system is not the golden ticket to every scenario, but I can tell you that for an SMA family a high HR can mean a whole bunch of things. Perhaps the Tobii could help narrow the medical possibilities. We will see.

There are nights that I choose to two books to read to her and she gazes at the one she wants to hear first, but there is always a lingering feeling in my gut that wonders, is she picking just to pick? Did I even pick two books she even likes? We needed this system so she could have the time to be intellectually independent and stimulated in a way perhaps Mark, her teachers, and myself aren’t quite giving her.

Medically, take last night for instance. Getty’s HR was elevated. She was whimpering. I repositioned her immediately, that didn’t fix it. I checked her temperature, that didn’t fix it. I changed her diaper, I would whimper if it mine was damp. 🙂 That didn’t fix it. I touched every part of her body to see if something hurt, that didn’t fix it. I knew she had already pooped, so we were good there. Tummy was not distended. Checked her bi-apap mask that she wears when she sleeps, no leaks. Then I put on a glove and started to rub her emerging molars. She cooed and immediately feel back to sleep as I laid by her side rubbing them till I fell asleep. Could I have turned on the Tobii system at that moment to see if she could tell me what was hurting? I am hoping it becomes a helpful hand in situations like that.

So a huge sighhhhhhh of relief and also so much excitement. It will be here soon and we cannot wait to update on her progress.

Everybody now ………..M M M My Tobii! 🙂