Getty Owl Foundation

Getty On Ice!

From Kate:

Last Sunday we had the absolute pleasure of helping to celebrate the 4th birthday of sweet Mr. Aaron. His parents have been a huge source of support and help with all things SMA and having them close in proximately has really helped us not feel so alone.

In fact on more than one occasion they have helped in an absolute pinch and we can’t thank them enough for stepping in to rescue us.

So Mr. Aaron turned the BIG 4 and to celebrate his big day we were all invited to go ice skating. What an absolute blast we had. We enjoyed spending time with everyone.

The ice skating part was a little worrisome. Mark and I do not skate. The idea of holding up my body with a thin piece of metal was a little unnerving. But we drew straws and well I lost. 🙂 Aaron and Getty were all snuggled in their strollers and Aaron’s dad, Robert and I braved the chilly rink and went for it. The skating rink was so very accommodating for us. They had a guide with us as we made our way around the rink. It was hard to skate side by side, so we kind of went in a single file skate off. 🙂 I was able to glance at Aaron’s expression and I believe he was having a great time taking everything in. Getty too was absorbing the moment. I was a little worried about, well everything. All the what ifs, but you know what, once we got on the ice and I saw Getty’s face light up, all was good. People would pass us and I watched her follow each ice skater. It was very cute. I pushed her from behind, so it made it difficult to really see her expressions, but I will say that I stopped a few times to check on her and she was so happy. A bit sassy I may add that mom even had the audacity to stop moving. Lesson learned. 🙂 She cooed as we made turns. Her eyes were full of wonder. A wonderful memory was created. I hope we can try skating again sometime soon. I think Getty really enjoyed it. So Aaron, we need to make another skate off date.

Happy Birthday to you, Mr. Aaron. You are the ultimate warrior and train engineer. We love you and your parents. Thank you for inviting Getty and letting us be a part of your special day. Ice skating rocked!

Less Than A Month, Have You Registered?

From Kate,

With less than a month left I wanted to do one last January “shout out” to remind everyone about the Getty Owl Run/Walk this February 26th in Crocker Park. Literally everything is in place and now we are awaiting the day that we can celebrate with everyone.

Our focus that day is SMA awareness and raising funds for SMA research, as well as celebrating  family, and to build community. We have designed the day with all of those aspects in mind. Throw in exercise, food, drinks, giveaways, vendors, crafts, activities for kids and adults and now you have the makings of an awesome day. We  hope you can join us. Click here to learn more.

You can register online and now you can also you can also print out our Registration PDF. Print it out, throw a check in the mail and just make sure it is postmarked by February 18th. Click here to learn more about registration dates.

We would like to thank our sponsors for believing in Getty Owl Foundation and our mission to educate the community about SMA. This event is going to be incredibly amazing due to the generosity of so many great companies. Click here to see all the awesome companies.

We have been so humbled by the outpouring of support to volunteer at the Getty Owl Run/Walk. From high school Key Clubs, to CSUS and UCD community service fraternities, to a group from AmeriCrops. We look forward to working with you all and can’t wait to have your help. Thank you all.

So what can you expect if you are a participant?

All participants registrations include an event t-shirt, goody bag, and post-race nourishment.

If you are kiddo you can expect a fun 1/4 mile fun run. You will be running alongside Dinger from the Sacramento River Cats as well as Captain Fitness from California Family Fitness. Do you have what it takes to beat them? :)Ribbons for all kiddo participants.

5K and 10K runners and walkers, your route will be wonderful. A nice run or stroll along the Sacramento Waterfront. Age group winners will be rewarded with medals during the post-race family festival.

Post-race nutrients will include donated fruits and bagels/muffins from Raley’s, complimentary Go Girl drinks, and a BIG surprise that I am not allowed spill yet. But it is AWESOME!!!!!!!!

The post-race family festival includes vendors of all kinds, crafts for the kids, handmade crafters selling their wares, music, and giveaways. Click here to see the growing list.

Thank you to all who have already registered. If you haven’t yet, there is still tons of time and we hope to see you there.

We are officially in countdown mode, so very, very excited!

Can you tell? 🙂

I Know It Is Just Laundry, But For Me It Is Time

From Kate,

Today our sweetest girl is 22 months old. Celebration and smoochies all around today. 🙂

It is our ritual that Getty and I sleep together for all naps and overnight sleepovers. We are dorm room roommates without the gross boys and loud music. 🙂

It is some special time that we get to spent together everyday. It is special time that although we are sleeping, we are still sharing some good snuggle time.

Today I woke up earlier from our nap and I slithered out of bed as quiet as I could. As I walked into the living room there was an obvious mountain of laundry that needed to be done. Although I am not the biggest fan of folding clean clothes I will say that there are some items that I love to fold. I love folding Getty’s clothes. I love folding her blankets, her sheets, anything. I have become very found of folding anything that is Getty’s.

There is something wonderful about washing her clothes. Something so amazing about folding her blankets just right. A feeling of complete contentment when I hang up her clothes.

I wonder if this seems weird to another person, but folding her clothes is a ritual that I need. It grounds me emotionally with every fold. I even refold some blankets, because it didn’t feel right. It needs to be perfect. She deserves perfect. I know pretty OCD.

In the past I would have never wanted to wash anything of Getty’s. My worry was that if I washed her clothes I would forget her scent if she was no longer with us. That thought consumed me and really paralyzed my heart. I think at one point I had exhausted her entire wardrobe in fear of washing anything. But what I found was with time, came permission.

I started to look at her clothes and blankets as more of a celebration. I started to actually go out and buy her clothes, I even bought her sizes that she was not fitting yet, but knew in the near future, she would. I became frantic about washing all of her stuff to make sure everything was just right for Getty.

Every load of Getty’s laundry is a celebration that she is thriving with a disease that wants to take her life. I don’t think SMA realized how big of a fight it was going to encounter with Getty. She is a heavyweight boxer and Getty is showing her opponent who is boss.

Every daily load of laundry is another day fought with valor and grace.

So when I see the mound of laundry of her’s I love diving in to get my fold on. 🙂 I know that I can’t battle SMA with my folding abilities, but it gives me the ability to control how fluffy and comfy Getty will be. And each time I fold her clothes, it also means time for me. I get to be blessed with more time with Getty.

You might be asking do I give the same care to Mark and my clothes? Um….nope. It is a huge and mind you, growing mountain of clothes. I hate folding our clothes. 🙂

The Power of the iPad

From Kate:

We purchased an iPad back in December of 2010. Our hope was that it could give Getty the opportunity to build some independence for herself and perhaps to give her opportunities to learn in ways that Mark and I might not be able. We use flash cards with her, we read to her, but there was always something lacking. Giving her the ability to explore on her own. Hands down other than important machines Getty needs, the iPad is pretty much right up there with them.

When she is old enough, Getty’s learning environment does broaden. There are a couple of options for eye gaze computers that we are very excited about trying. But for now, the iPad has really been our savor.

So how has the iPad helped Getty. Well simple, it gives her an educational support, helps support as many modalities as she can access, and quite frankly, I think it helps to build her sense of confidence and self.

Getty is physically limited, but she is cognitively on par if not more so as an almost 22 month old. Often times I worry that we may be boring her with the books we read. So we have stepped that category up a notch and are literally reading her 3-6 year old level books. The small peekaboo books are seriously not cutting it. 🙂

To get around the the physical limitations, we use arm slings from InsideSMA.com that sell both arm slings and leg slings. These slings have become such a support for Getty. In order to access the iPad effectively, she is placed in the armslings for comfort and for access.

I know the iPad has helped many people with physical challenges in life. I also know that, well the iPad isn’t cheap either. We were lucky to have enough money stored away at the time to buy Getty one.

Right after we bought it and we were blown away by the capabilities, we wrote a letter to apple. The short story was, “dude you have a great product that can open so many doors for our SMA kiddos, could you give a discount to children affected by SMA?” Well I didn’t exactly say that, but you get the idea. We received a nice letter back stating that the iPad was not considered an educational item for learning. REALLY? I was a bit dumbfounded, but at the time we just left it at that. Getty was just about to be scheduled for her g-tube placement surgery and well it just wasn’t worth our time at that moment. But now I am starting to wonder. And now I am starting to get a little antsy, I kind of want a better response and justification on how this incredible tool is not considered an educational tool. Maybe someone reading this could enlighten me. Maybe someone reading works for apple and could contact me so we can get the ball rolling to help more incredible kids have access. 🙂

So here for your viewing please is our amazing daughter, Getty using her iPad.

In my opinion, I think she is learning and using applications of:

-Cause and Effect

-Identification of symbols, animals, numbers, letters, colors, sounds.

-Gross motor skills

-Sentence structure

-Verbal communication

Just to name a few………so maybe I will write another letter. 🙂

I apologize in advance for my commentary. You can just mute the videos if you like. 🙂

This one is just a cute one. Richie fell asleep on Getty’s belly while she was on her iPad.

The Activity Mailbox

From Kate:

Everyday in our house can become really routine and then some days completely thrown off. I am a routine kind of girl and I am finding that Getty likes routine as well.

I was at Target the other day and aside from the usual purchases,  I was trying to find something that would help Getty be more in control over what her day entails. Mark and I are really working with Getty on making choices. Whether it is what she wears for the day, books she reads or what movie she watches. She is starting to make the eye gaze connection between two items. This is really exciting for Mark and I for lots of reasons, but mainly because the hope is that we are helping her feel empowered to make her own decisions.

So that was my motivation as I walked the aisles of Target, trying to find just the right thing to help make, making choices kind of fun. A daily routine for us to enjoy together. So I found some stuff and brought it home in the hope that it would be a success. A mailbox, stickers, and and some cards. Fingers crossed!

So the idea would be that every morning I could tell Getty that she has mail and then I would bring over the mailbox and she would be able to choose what activities we do that day.

So we put the mailbox and cards together. I wrote activities down on each card and then Getty helped put the stickers on.

So here are Getty’s activity cards. My hope is that picking a card everyday will help her choose the day’s fun. So some of the activities include painting, ipad, movies, flash cards, reading, singing, music, etc.

It has felt like lately that Getty is having more fun watching TV of movies. While I know there is a place for that in her day, I was hoping that we could minimize with activities she actually picked.

Okay so fast forward to this morning. Today was the first day and I just knew it was going to be a hit. Angie was here with us and I told her all about the mailbox and we are both ready for the inaugural day.  I was so excited to talk about how she had mail and how she got to choose a card in the mailbox. I was excited to open up the card she picked to celebrate the activity we would be doing that day.

She cried! She cried when I opened the mailbox. She cried when I asked her to pick a card. She cried when I asked her to choose a sea creature. She just cried!  Getty never really cries unless she is super tired or ……..you are in her way of the movie she is watching. And that is exactly what I was doing. She didn’t care about the “mailbox activity” she just wanted to see if Tiana was going to turn back into a human so she could buy her restaurant (Princess and the Frog). The moment I took the mailbox away and she could see the TV, the crying stopped immediately. 🙂

Here I was trying to change her routine with a mailbox. Silly mommy. So we will slowly try to incorporate the mailbox. It may or may not work, but I will try it. Maybe mommies out there have really tried something that they thought would work and failed miserably. My guess is that since Getty already has a routine in the morning, why change it up right? So to counteract some of that, I think I will very slowly add things, maybe she won’t notice. 🙂