Getty Owl Foundation

New Upcoming Event Added

We have added a Pampered Chef Party as a new upcoming event!

Click here to check it out!

Thanks!

Getty’s 1st Halloween

From Kate:

I think about this time last year I was just starting to show my pregnancy. I remember Halloween last year and thinking about how fun it was going to be to have little Getty with us. I remember walking the aisles in Target to see what kind of selection was out there for our new addition. I settled on a ladybug costume that had a big puffy body and a equally puffy hat. It was going to be perfect. So should I buy it now or maybe wait until she is born? I decided to wait, and I am so glad I did because Getty isn’t a ladybug, she is an owl.

When Getty was born she instantly looked wise like an owl. Her old soul allowed her not to stress much about anything. Still to this day if Getty does get fussy, which is rare, she has a clear reason for it and we can usually figure it out pretty easily.  Her deep blue eyes are always focused on the nearest face and she always seems to be looking into your soul.

Her cheeks contribute to her profile of an owl. Her soft puffy cheeks are so kissable and become pink when she smiles. Her round belly solidifies the persona of an owl. Now if we can just get her to “hoot, hoot” we should be good. 🙂

We got a chance to meet a terrific couple about a month ago, Robert and Meri Phelps. We had been corresponding with them for months, but only just lately got a chance to meet personally. They welcomed us to their home and we got to meet their sweet little son, Aaron. We felt so comforted to be able to ask lots of questions about SMA and to get a chance to gauge where our journey is possibly going. After lots of conversation, Meri brought out a costume that she thought would be very appropriate for Miss Getty. It was an owl costume that Aaron wore the year before. It was simply perfect. What are odds I thought to myself? I didn’t question it and took it home for Getty to wear.

So the big day came yesterday. I have been waiting to share this with Getty for an entire year. I dressed her in the costume and Mark and I took some everlasting pictures of our little girl.

My thinking, at least right now, is that Getty might have to be an owl every year. It just doesn’t seem right for her to wear anything else. Well we have a year to think about it at least. I think next Halloween, I will let her choose. 🙂

I hope everyone had a wonderful Halloween. We had a great time handing out candy and checking out all of the Spider-men, ghosts, and pirates.

It was wonderful to spend time as a family after our great trip to Santa Rosa. Getty was very tired but in good spirits. She was a real trooper allowing us to dress her up and to take lots of pictures.

Our loyal steed, Cooper, took part in the Halloween festivities as well. He, too, gets an annual costume. He has been a lobster, a ladybug, and this year, he was a pink fairy. He truly puts up with a lot. But I think he was happy that he wasn’t the only one dressed up this year. His sweet sissy was right there with him.

Relaxing in Santa Rosa

From Kate:

It has been very difficult to get out of town in the last few months. Mark and I have always enjoyed sneaking away for a weekend here and there in order to just break from the routine of life, see new things, and relax in a different environment. We were able to get away this summer briefly for a few days to take Getty and Cooper to San Fransisco. It was wonderful to find a dog-friendly beach for Coop to run his legs off and for Getty to see the ocean for the first time.

We have been so incredibly consumed with Getty’s SMA that we simply didn’t know when would be a good time to sneak away. We hadn’t given it much thought and we also were not sure if Getty’s health would be compromised if we did. So last week I looked at Mark and said, “we need to get out of here!” For both of our sanity we need to breathe and relax. So here we are in the Railroad District of old Santa Rosa.

The moment we got to the room, we laid sweet Getty on the bed. She just giggled. It is far fluffier and bigger than our bed at home. She looked at us as if to say, “where are you guys going to sleep?”

The Railroad District is adorned with Peanuts character statues. Charles Schulz, in his later years, lived in Santa Rosa and there is a museum in his honor we will be checking out tomorrow. I have always been a huge fan of all the Peanuts characters. Snoopy and Woodstock have always been my favorite cartoon characters. I was hoping to get out this way so Getty could see all of them and perhaps enjoy them as much as I do.

This trip was made possible thanks to a couple of things: a car bed and a stroller. The car bed was loaned to us from Families of SMA (FSMA). Getty is no longer able to safely use a regular infant car seat. The contour shape of a regular car seat cuts off her airway and causes her to gurgle on her saliva. The car bed allows Getty to safely and comfortably lay down in the car. I rode in the back with her on our way to Santa Rosa and I felt a bit envious as she looked so comfy and snuggly in her car bed. She fell asleep almost immediately and remained snug as a bug until we got to the hotel. Thank you FSMA for being so thoughtful, we certainly appreciate it.

We were also given an unbelievable gift from one of Getty’s guardian angels. An anonymous person gifted us a new stroller. This stroller has the ability to recline and fits the shape of Getty’s little body. She is so comfortable and she is so much more happy when we get out. Earlier we were getting to the point where we were reluctant to go out in the old stroller because we knew she felt restricted. Since the previous stroller was actually just a frame to hold the removable car seat, it restricted her breathing, contributed to her gurgling, and she just looked miserable as it was hard on her posture. For the person who purchased this stroller we can’t thank you enough. You have given us peace of mind and that, in itself, is so precious to us. Knowing that Getty is protected from the elements and at the same time surrounded in comfort and safety is just amazing.

We have really enjoyed catching up on some great family time and on some much needed sleep. We have enjoyed just being in the moment and enjoying each others company and making memories.

PS: The plastic cover on the stroller is a rain shield.

Make it Through

From Kate:

We wanted to share an absolutely beautiful song that was written and sung by Robbie Rosen. “Make it Through” is a fitting tribute to a little princess, Miss Sophia, who shares the same SMA Type I diagnosis as Getty. Her family is such an inspiration to Mark and me. We continue to lean on them for advice and strength.

We encourage you to watch it and share with others.

Thank you to Vincent and Catherine Gaynor for incorporating other sweet babies and their angels in the video.

http://www.youtube.com/user/robbierosensings#p/a/f/0/mZ51wEIWrNk

Here is a link to their Sophia’s Cure Foundation in honor of their sweet Sophia:

http://www.sophiascure.com/

A New Normal

From Kate:

When Mark and I received Getty’s diagnosis we knew that life as we knew it would never be the same. We had no idea what that meant at the time. I mean how could we, our wounds were still so raw with the realization that we may have limited time with our beautiful daughter.

As the past three months have been moving along, we are finding that our lives are slowly moving to a new normal. True, life as we knew it will never be the same, but we resolved with the notion that in time things would slowly start to change and that this journey would be windy and complicated but for the most part we could remain kind of doing things as usual. Boy, I could not have been more wrong.

A new normal is created every day. What I thought I could trust and control just changes the next day. I made my usual phone call to Mark today at lunch with just a quick check on Getty and to see how things are going. It gives me a chance to hear little Getty in the background and it helps me get through the rest of the day. Today was a different phone call. Mark let me know that he was taking Getty to Kaiser because she was coughing more frequently with each feeding. The nurses felt that the next step would be to get an NG Tube. My heart was just crushed. I cried immediately and I couldn’t stop crying. I stood there in my room just trying to figure out what our steps were. Does this mean that she is loosing her ability to swallow forever? Is this temporary? I was full of mixed emotions and I just needed to get to her.

The appointment was scheduled for 2pm, so I just needed to compartmentalize for an hour and a half. So that is exactly what I did. Class went on as usual and then I was racing to the car to get to Kaiser. On the way there I was overcome with emotion. The only thing I could verbalize to myself was, “can’t we just get a break?” Is it too much to ask to give Getty a moment of peace? Would it be that much to request that Mark and I could have a moment with our precious Getty and not have to worry about fighting doctors, or overwhelmed by work, or the unrelenting pressure of SMA? At that moment I just wanted a break.

Getty, Mark, and I were reunited at Kaiser for the third time this week. We met the doctor and she was just great at explaining to us the in’s and out’s of taking care of the NG Tube. Taught us how to troubleshoot, how to make sure the tube is in place, and basic care. She put the NG Tube in Getty’s left nostril and slowly moved it farther down into her stomach. Getty was an absolute trooper.  There were times in which she got a little uncomfortable and then just as quickly it was replaced with a bright smile. She kept looking at Mark and I with this immense sense of calmness, as if to relieve our own anxiety.

The appointment went on for at least three hours. We got a chance to do one feeding and Getty seemed to do okay. We now know that we have to feed her less but more frequently. We need to encourage the bottle feed until she tires or if she continues to cough. We need to continue to encourage her to use her paci as well. That will help her maintain her mouth muscle strength. A new normal.

We were just about to leave and the receptionist let us know that we had guests in the waiting room. Who knew we were here and who would be waiting for us?  I left Mark and Getty in the room with the doctor and I walked out to see who was here. I turned the corner and saw two incredible friends standing there ready for hugs. I needed hugs, I needed to talk about what we just learned, I needed to be heard. T and Takoa you both are just true friends. I don’t know how else to say that. How am I ever going to repay the love that you give to Getty, and my family. I can’t tell you how comforting it was to turn the corner and to see you both standing there. You are our angels.

So our normal is not normal at all. In fact it is the opposite of normal and I think this is just the way it will be. What Mark and I truly have control over is the amount of love and devotion we have for our Little Getty. Rest assure we are making sure she has all that she can handle and want  in every second of every day.