Getty Owl Foundation

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. 🙂

Here We Go 2012! Let’s Make A Difference!

From Kate:

Okay here we are, the new year is upon us. Won’t you join us to help raise SMA awareness, raise funds for families affected by SMA and raise funds for research? While also burning some calories, having a great time, and enjoying a post-race family festival. Not bad for one day. 🙂

Learn more about Getty Owl Run/Walk

Here is where you Register

Learn more about the Post-Race Family Festival 

Check out what companies are Sponsoring

If you would like to join Team Getty

On behalf of Getty Owl Foundation and our family, we thank you in advance for participating. We are so excited for this event. Hope to see you on Sunday, February 26th at Crocker Park, Downtown Sacramento and we hope you have a terrific time.

Houston, We Have Liftoff!

From Kate:

The benefits of a stander are as follows:

• Increases bone density
• Improves digestion
• Psychologically beneficial
• Builds endurance
• Gives a person a better chance of exploring the world.

So here we are in January and, without going into too much detail, Getty is finally able to use her stander. We are absolutely beside ourselves with happiness. Getty thinks it is cool, too. 🙂

Some of the roadblocks we met along the way that slowed, halted, and snail-paced this opportunity for Getty were:

• Doctors not convinced SMA Type 1 kids could tolerate being upright.

• Insurance denying the payment of the stander.

• Waiting for Getty to be referred to and accepted by Shriner’s as a patient to recieve much needed TLSO (chest brace) and AFO’s (ankle braces) needed to safely use the stander.

• Getty getting approved for Medi-cal.

• Waiting to get Getty accepted into California Children’s Services (CCS) to be evaluated and to start the process of getting a stander.

In my imaginary world, all children with SMA are given all the needed supplies, machines, and equipment to assist to live a quality life.

What I am learning is that not all states, counties, and cities are the same with resources.  Some things we have received without any resistance is a full fight for another family. The opposite is true, too.  There is no rhyme or reason why some SMA families have to fight for X but not Y, and others must fight for Y but not X, and still others have to fight for both.

All of these roadblocks took months and months to unwind. Then in October, as Getty’s low bone density continued  to be a known problem, we just said, “Screw it! We are buying Getty a stander.” The paperwork, bureaucracy, and resources that fell just short from helping us acquire a stander for Getty left us so frustrated and exhausted.

Luckily, I was able to find a family that was selling their stander. I drove the four hours, there and back, bringing home a very special package for Miss Getty.  The Prime Engineering, Super Stander is now a permanent fixture in our home.

Purchasing the stander was just the first piece of the puzzle. Once we got the appropriate braces, we needed to figure out what incline degree Getty would tolerate. The process is very slow. Thanks to many SMA families, we were able to gain a wealth of knowledge regarding tolerance and pace.

As a mother, it was killing me to know that I couldn’t get Getty in the stander earlier. It is like knowing that there is a piece of equipment that has the potential to increase her well-being and health, and I felt like I had failed her. The resources around us were not willing to purchase it, or they were telling us that she would never tolerate it, or I was handed another form to fill out with no assurance of approval.

I am happy to report that Getty has been using her stander for the past month. Every day she spends about an hour and a half in it at about a 50 degree angle. She is also tolerating this incline without the need for bipap support, which really is encouraging.

At some point, our goal for Getty is to help her tolerate being completely 90 degrees upright. Slow and steady.

Princess Getty I presume.

Hanging out watching Little Mermaid. Ironically, to hold her arms in, we use an ACE bandage which resembles  … RED TAPE.

Knee braces & AFOs in stander and in pink tights. 🙂

A few nights ago, Getty and I chased Mark around the house. It was so much fun to push her around the house in her stander as we played tag with Daddy. She giggled as we got close enough to tag him and then we swung around as fast as we could to run away. It was a wonderful time and an everlasting memory.

Last Chance 2011

From Kate:

Since the end of year is coming quickly, I just want to remind everybody about our tax exempt status. We are a 501(c)(3) public charity and donations are tax deductible.

There are many worthy charities out there. If you are making a year-end charitable donation, please consider Getty Owl Foundation. Your gracious donation will help raise SMA awareness, assist families affected by SMA, and accelerate research to help find a treatment or cure.

If you would like to donate, click here or click Donate at the top right corner of our website.

Thank you and Happy New Year!

Merry Christmas to all!

From Mark and Kate:

We just wanted to wish everyone a very Merry Christmas. To all of our family and friends, we love you.

We wished about Getty’s 2nd Christmas and 21 month Birthday and here we are, as a family, spending this special day together. Santa, if you arranged this, well then we thank you. Of all of the houses you need to stop by to make kids’ lives better, you managed to stop by ours to give us the gift of time. Time will forever be precious to us. So let’s just assume that is our family’s forever wish, Santa. Make a note of it. 🙂

We wanted to share a special video Morgan made for our family. She came over Friday night to take holiday pictures. Morgan, thank you for capturing a very special night for us as a family. Reflecting on last year, it is clear that Getty is blossoming into a little lady before our eyes. What a blessing it is for us to witness.