Getty Owl Foundation

A Candle for Getty

From Kate:

We want to thank everyone for lighting a candle for all of our children of SMA. We have found the SMA community to be so gracious and helpful. We thank you for your incredible sense of purpose and determination.

Mark, Getty, and I have just begun this journey. We have no idea where our journey will take us, but rest assured we will be doing it together.

Light a candle!

From Mark:

Please light a candle tonight at 8 pm your local time in honor of those affected by and lost to Spinal Muscular Atrophy.  August is SMA Awareness Month and the 2nd Saturday is the annual candle lighting event. Thank you.

It’s Bert!

From Kate:

So we finally figured it out. For the longest time Mark and I have been trying to figure out who Getty sounds like when she laughs and then it hit us: Bert, from Sesame Street. She laughed while we walked tonight and were aren’t quite sure why but it was infectious for sure. What a goofy kid.

We stopped to eat some yogurt tonight and I locked eyes with her and this rush of warmth ran through my body and I thought, “I get to be her Mom, I am Getty’s Mom”. How lucky is that?

I took a picture of Mark and Getty tonight while we enjoyed dessert. What a pair. She was certainly eyeing our yogurt.

Hats

From Kate:

I am sure for most 4 month olds, holding a toy in their hand is probably not a huge feet. Perhaps it doesn’t take much to grasp and move an object from one hand to the other and ultimately winding up in their mouth. Well for Getty her grasp is pretty weak, I have a little ball that she can hold onto just long enough to get to her mouth and then it falls from her grasp. She does not frustrated, she just tries again. As her mother I watch her try over and over and I get frustrated for her because I want her to be able to reach that goal. She persistently tries but to no avail. She then drops her ball and slowly brings her hands to her mouth and plays endlessly with her tongue. There is something enchanting about grabbing her tongue with her fingers. So cute to watch. Rest assure I have video’d several versions of it. It will never get old.

A walk today helped Mark and I clear our heads a bit. I go back to work in a week and I am wondering what that is going to look like. I am going to be half-time and so it will give me lots of wonderful time with little missy. I work with some incredible people who love what they do. I look forward to seeing them because I know they will take good care of me this year. I know I will be in good hands while I am away from my family.

Getty will be in terrific hands during my absence. She will have her loving and adoring father for most of the time while other days will be with her wonderful grammy. I also don’t want to forget her big brother Coopie will take great care of her too.

Tomorrow my mom and I are going to Kaiser to pick up a pulse oximeter for Getty. It will measure her pulse, breathing rate, and blood oxygen level. The dr. wants us to test her this weekend to establish a baseline.

I am posting a picture of Getty and I wearing our hats. She was so fascinated with the one I was wearing today I thought she might like to wear her own for our walk tonight.

Family Pictures

From Kate:

I believe this journey will be ever evolving. Some days are very difficult while others are jubilant. Today would be classified as jubilant. Getty was giggly and happy; we added toys in the bath and she enjoyed playing and splashing. Tim, Lolomi, and cousin Reilly had us over for dinner and Cooper got to run his little legs off with his buddy Harley. We enjoyed a nice walk and the weather tonight was just beautiful.
A week ago we got family pictures taken and Morgan posted them for us tonight. She has a wonderful eye and she really captured the essence of our family. Morgan thank you so much. These pictures will always be a record of our love and devotion.

I know that we can’t thank all of you individually for signing the guest book, but just know that every time there is a new message it lifts our spirits even higher and it gives us the strength to give Getty every ounce of our love and devotion. Thank you all for signing, for following, and for loving our little owl. It means so much to us.