Getty Owl Foundation

Hair Combing 101

From Kate:

Let me start by saying that Getty loves her pink comb. I bought a package of them a few months ago and she picked the pink comb for her usual hair brushing. She enjoys when we brush her hair. She loves clips, she loves head bands, and frilly bows. Is this really my daughter? 🙂 So today she was holding her comb as usual, while watching The Big Brag, by Dr. Seuss in her stroller.

For the entire duration of the story I heard the “plunk” of a plastic comb and then a cry. I got up from the couch to find Getty had dropped her comb and was telling me to pick it up for her. This happened about 7 times and each time I laid it back in her hand and she gave me a big smile. “Here you go Miss Getty”, I said. Went back to the couch only to wait for another “plunk”.

Then I got smart. “I’ll just tie the comb to her hand and then she won’t be able to drop it.” And that is what I did. I used an arm sling to hold the comb in place.

I had taken my eyes off of Getty for a minute to write an email and then my eyes were distracted by a moving pink object.  I ran to get the camera. Man, I wish I could have gotten more footage, but here you go. She was combing her hair for a good two minutes.

[youtube=http://www.youtube.com/watch?v=cfBx5Xx9xb4]

I have the girliest of girls and I couldn’t be more proud.

Breaking News, GETty Crafty is Back!

From Kate:

Our fabulous friend and fellow board member, Stacey is at it again! Planning, plotting, and orchestrating another amazing day in the park. With almost 70 vendors already signed up, we know it is going to be great day for a great cause. We hope to see you there!

Oh and a little secret……..we are giving out swag bags of stuff for the first 100 people. 🙂 Don’t miss out!

If you would like to sign up to be a vendor, email Stacey at staceyball@gmail.com. $30 for a 10×10 booth space.

If you would like up to date info on the craft fair, follow GETty Crafty on facebook.

Team Getty Runners: Shiloh, Linsey & Megan

From Kate:

It is Wednesday, you know the drill. More and more runners stepping up to be a part of this challenge, experience, and journey. Every time I write this post I am always so impressed and in awe of what all of these runners have signed up to do. Raising money for research to help find a cure for SMA, raising awareness about the #1 genetic killer of infants, and raising the bar for our community. All of you commitment is very humbling, thank you all. Tonight I introduce you to Shiloh, Linsey, and Megan.

Shiloh Harrison
Age: 28
Birthday: Oct 22
Favorite Colors: Baby poop green
Hobbies: Refurbishing Antique Furniture, Acrylic Painting, Interior Design, Writing
Interesting fact about yourself: I have traveled to 14 countries, seven of which were in Africa (my favorite continent).
Have you ever ran a marathon: Nope
Had you ever heard of SMA? I had never heard of it before Morgan Saunders taught me about it.

Bio: I am currently an Admissions Counselor at William Jessup University. Prior to this I was a Youth Pastor and was living in Manhattan while attending Graduate School at New York University. I love to read, paint, journal, mentor, play basketball, and be with friends. I am excited about challenging myself to do something like this and hopefully help Getty find full healing and health!

Linsey Pearson
Age: 18
DOB: 8-5-92
Favorite Colors: Green
Hobbies: Babysitting & Riding my bike 🙂
Interesting fact about yourself: I am the youngest of five kids, but I feel like the oldest.
Have you ever ran a marathon: I have not but I would love to!
Had you ever heard of SMA? I have from my cuzzy Morgie

Bio: I come from a family of 5 kids, which landed me with 3 older sisters and 1 older brother. I love my family to pieces. I look forward to running the relay with my sisters. I think that it is cool to help Getty by running a marathon. I am glad to be a part of this cause.

Megan Frederick
Age: 23
DOB: 6-11-87
Favorite Colors:
Hobbies: Black n White:)
Interesting fact about yourself; I love people!
Have you ever ran a marathon: nope, never.
Had you ever heard of SMA?
At a photoshoot my husband did he met a beautiful little girl with the biggest, prettiest blue eyes. Unfortunately Little Getty was diagnosed with SMA, but ever since we found out about her and SMA we have been helping to fight♥

Bio: I am a wife of 2 years to a fellow runner Tyler Frederick, and have been blessed with a now 14 month old son and a baby girl due June 10th. Words can not express the love I have for my babies and God has truly amazed me with Zykahs love in return.  We are glad to partner to help this beautiful baby out. Go Team Getty! Let’s help find a cure!

Getty Bunny!

From Kate:

This year being Getty’s 2nd Easter, we wanted to make it extra special. We were telling her yesterday that the first time we celebrated as a family she was as small as a jellybean and now she is a little lady. Wow, how times flies!

The night before, Mark, Getty and I decorated some eggs. We put Getty in her arm slings and we went to town, decorating all 12 eggs.

                                        Pre-egg dunking! Busy Bee!

                                      Playing with the egg.

                                       One is certainly not enough!

                                        Getting a little help from Daddy!

                                       Enough said!

                                       Getty is certainly not camera-shy. 🙂

[youtube=http://www.youtube.com/watch?v=l5JOI8dTQMc]

Easter Sunday, Grammie and Papa came over for dinner. We got Getty in her Sunday best and we had dinner and hung out as a family. We had a very relaxing time.

                                        Where’s the Easter Bunny?

                                        Yum eggs!

Special Moments

From Kate:

A digital camera and video have been so vital to us since Getty’s diagnosis. I would hate to think what we could have missed without capturing some really incredible moments. Had Getty been a healthy child and hitting the usual milestones I have a feeling that every flicker of a finger, every smirk would have been in a way overlooked because I would know that there would be more to come. Or heaven forbid I might not have even noticed the rotation of a wrist because that is “normal”.

Tuesday, Getty got her annual immunizations and since then she hasn’t been feeling her usual spunky self. Her oxygen levels are lower and so we are just watching her a lot more closely. A child with SMA is an intense experience. Both physically and emotionally. Their care is 110% if it were possible. So when her O2 sats dropped into the lower 90’s we started getting into trouble shooting mode. Constant vigil due to the fact that anything can change in a moment and then you need to make some decisions. Do you handle things at home and try to remedy the situation or is this situation greater than us and now we need to allow Getty to be in the hands of professionals that don’t know much about SMA? Scary to say the least.

After a lot of diligence and care as of tonight, Getty’s O2 levels are slowly coming back up and her spunky self is started to surface.

It is Friday night and Mark and I are pooped. I am sure some people out there are enjoying a Friday night out and about with a loved one. Perhaps sneaking out for some couple time away from their little bambino. I am envious, but not jealous. I only ask one thing, “could you do me a favor and have a beer for us?” 🙂 Just one, thank you.

So this week while we have been monitoring Getty, I have pulled out the camera several times and video a couple of times to capture special moments.

Yesterday Grammie came over and spent some precious moments with Getty. Thank you Mom for coming over and 1) Bringing dinner and 2) Giving me a short break so I could just do some normal things. I actually enjoyed sweeping the floor, cleaning the bathroom, and doing a bit of laundry. There is something therapeutic in doing household chores. It gave me a chance to clear my mind and to concentrate on some else besides Getty for only moment, but it was enough to kind of recharge. While I was cleaning I was hearing all kinds of giggles coming from our room so I grabbed the video to make sure I didn’t miss a thing. Getty sure loves a good dose of Grammie. I love you Mom!

[youtube=http://www.youtube.com/watch?v=loNXUHLEI6M]

When I was a kid, I always seemed to wake up early on special occasions. Christmas, Easter, etc. once I was up, well everyone needed to be. Getty has certainly taken after her mama. Mark has been working very hard on a case all week and adding to that has been helping care for Getty. He took a very quick nap to rejuvenate.  Little Miss Getty was also sleeping along side of him. She woke up shortly after and wanted to get going. So her next plan of attack was to wake daddy up as well. I felt bad for Mark because his nap was cut short, but it was so darn cute to watch her wake him in such a forceful way. 🙂

[youtube=http://www.youtube.com/watch?v=1LvtZDw-cew]

The video is kind of dark, but her sweet little right hand is holding some of her birthday balloons and she is beating her daddy with them, and I think she is saying, “Dad, Dad, Dad, wake up!”

I hope everyone has a very special Easter. Getty’s Easter basket is all ready to go and we can’t wait to celebrate with her. We are truly blessed.