Getty Owl Foundation

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.

May you live everyday of your life!

From Kate:

It is with a heavy heart that I write tonight. Mark received the phone call today that we knew was coming but dreaded to get. Our neurologist called with the blood work results. Our little Getty has SMA. This week we have been gearing up for that call and we really thought we were prepared, as much as we could. And still our hearts were very sad and felt like life had dealt our little girl an unfortunate hand.

Getty’s diagnosis has changed our lives forever. We will never be able to go back to what once was. But now after reflecting on how far we have come as a family I am proud of our little girl. She is only 4 months old and she has done more in her life so far than a lot of people will do in a lifetime. She has brought her mommy and daddy closer together, she has unified her extended family to fight for her, she has convinced even the most stubborn to live in the moment and she has singlehandedly touched people who have never met her to want to be better people. I am so proud of you little owl.

I came across this quote and I thought it would be worth sharing. “May you live everyday of your life”

Just Another Day

From Kate:

Today seemed like any other day, normal was nice for a change. Mark worked in the office all day. I know that it isn’t business as usual but he put on a brave face to help his clients. I commend him for devoting the day to helping provide for us. That can’t be easy right now. Thank you honey, it means more than you know.

Getty and I hung out. We ate, played with her new toys, took a few baths, and then a long walk tonight with her buddy Cooper. I noticed as we walked she took great joy in watching each tree during our route. She seemed to mumble a little while we passed each tree. It sounded so cute, I wonder what she was talking about.

Now as we wind down to bed, Mark is playing airplane with her paci. She is giggling and joining in with the game. Such a sweet sight. She adores her daddy, and he to her. What a special relationship.