Getty Owl Foundation

Wonder

From Kate:

As we have journeyed through life since Getty’s diagnosis, there have been situations or experiences that would be far better explained from the lyrics of a song. You know how a song can really capture a thought, feelings, or just an overall summary of an experience.

Well as Mark, Getty, and I sat in a room in the department of Pediatric Specialties, and we watched doctor after doctor introduce themselves and talk to us and then leave, only to have another one come in and do the same. Kind of like a revolving door of specialists. At exactly the same time there was a song playing in my head, perhaps to calm me, but really to capture the experience of September 7th. I could hear the song Wonder, by Natalie Merchant in the background of my mind. It is a sweet song that embraces the mystery of the human being. I am bias, I think Natalie wrote it for all of our beautiful SMA babies. 🙂

Some of the lyrics perfectly capture Getty’s experience. “Doctors have come from distant cities, just to see me, stand over my bed, disbelieving what their seeing. They say I must be one of the wonders, God’s own creation, and as far as they can see, they can offer no explanation.”

There was a moment yesterday that reassured me that Mark and I were doing all we could for our little owl. The neurologist mentioned how “plump” she looked. “She must be getting so much love, keep it up you guys.” Mark and I grinned from ear to ear.

Getty was examined by all of her doctors and they were just elated by her progress and were excited by her strength. We couldn’t agree more.

The picture attached is a Getty and her Crunchy Lion. She seems to take him everywhere she goes.

Team Getty

From Mark:

Getty has met her entire team at Kaiser: Pediatrician, neurologist, speech therapist, radiologist, nutritionist, pulmonologist, gastroenterologist, pediatric nurse practitioner, and social worker.

The consensus is that Getty’s systems are strong and stable. Her blood oxygen levels, respiration, swallowing, and digestion are all normal. She doesn’t need any special equipment yet, which is great news!

Kaiser Team Getty is a wonderful group of people and they all seem genuinely eager to help her however they can. Thank you!

We need to prepare Getty for winter because something as simple as catching a cold can really take a toll on an SMA baby.  Otherwise, other than hypotonia (floppiness), all signs are good at this point.  Now that we have a solid baseline, she’ll be visiting members of Kaiser Team Getty about once a month.

Yum, Solids!

From Kate:

Labor Day weekend brought a few firsts in the Storm household. Sunday, Getty and I enjoyed a great walk with Takoa and her two beautiful children, Mady and Charley. The walk and the conversation was much needed and we enjoyed looking at all the nature around us. Thank you Takoa for your support and time.

Getty tried solids for the first time. A bit of rice cereal was not to Getty’s liking. She opened her mouth when the spoon came to her lips and then she spent more time spitting out the contents. It was very fun to watch.

Another first was for Mark. We ate in old sac and found that the restaurant
we ate at did not have an elevator, so daddy picked up Getty’s stroller with her in it up three flights of stairs. Thanks daddy!

Tonight my Mom and I tried rice cereal again. Thinking Getty was not going to be interested, we were pleasantly surprised when she happily opened her mouth and happily swallowed every helping. Followed by a quick rinse of milk and she was a happy camper. Way to go Getty!

Tomorrow is a big day. The doctors that formed Team Getty at Kaiser will all be meeting with us, we look forward to meeting everyone.

The picture I am attaching is Getty and her new friend, “crunchy” Lion. She gave him her formal licking, so we know he is now a member of her animal pack.

Goodnight little owl!

Teammate

From Kate:

In roughly a month, Mark and I will be celebrating five years of marriage. From the moment I met Mark I knew I was spending time with a wonderful man. He is engaging and when we would go out on dates I knew that to him, I was the most important person in the room. He is patient and he is deliberate in his word.

I remember when we found out about Getty’s arrival, we both were a bit shocked, but I think inside we both were so ready to become parents. As the months went on Mark went to every appointment, participated in every parenting class, and also was willing to rub my throbbing back in the last months of pregnancy. Mark has always been present and willing to lend a hand. We were a team.

In the labor room, he as there, actively making sure I was comfortable and coaching me along the way. We were a team.

Getty’s arrival has not changed Mark, it has just made him an even better husband and now father. The characteristics I have always appreciated in him have become even more apparent.

He is an amazing father. After going back to work after 6 weeks of maternity leave, he and Getty created the “Daddy & Getty Club”. A very exclusive club that developed a mutual love for one another. So exclusive in fact that there were times when I would come home from work and Getty would look at me as if to say, “Mom you need to wait your turn, I am with Daddy right now.” It melted my heart.

Mark is conscious of Getty’s needs and he is always doing his best to give her and I love and attention.

Our marriage has obviously been tested with a diagnosis of SMA. Can you nurture a marriage and a child with the same kind of care? Can two individuals who are equally consumed by grief, take care of each other? I can say this much as of right now, I wouldn’t want to be going through this journey with anyone else but Mark. He is Getty’s favorite guy, and he is my teammate. We are doing this together and I appreciate his love for both of us.

Five years ago I agreed to be a part of a team, but at the time I was not sure what that entailed. Now it is obvious what it takes to stand together and walk this journey together.

Mark, I thank you and I love you.

Mama Bear

From Kate: