Getty Owl Foundation

10 Months of Getty Spaghetti

From Mark:

Today is Getty’s 10 month birthday!

The days are getting longer, we are more than half way through RSV season, and Getty is doing well. She has one more Synagis shot to get, and we can’t wait for spring to arrive to take her around and show her more of the world than the freeway and Kaiser facilities.

We reduced her daily calories because she’s getting to be a bit of a chunk! Being able to gain weight and keep it on is a good thing for an SMA baby, but as with all things, there’s a limit. We increased her calories a few months ago and she had a huge growth spurt, blazing her way through some clothes sizes.

We increased her cough assist machine pressures, which probably makes it a bit more uncomfortable for her to go through her daily routines, but did she fuss? Not at all. I am so proud of our little scooter!

January has been the first month we have been able to be at home without any major medical worries since the diagnosis came at the very end of July 2010. In August, we were terrified with the brand new diagnosis as we struggled to climb from the very bottom of a steep learning curve. In September, October, and November, we were starting Getty’s collection of medical equipment and fighting our doctors about various protocols as we worked our way toward Getty’s G-tube and Nissen sugery in mid-November. In December, Getty was re-admitted to Kaiser Hospital to get her bipap machine settings done. Now it looks like we finally have a g-tube, a Nissen, and all the basic SMA gastro and pulmo equipment.

Best of all, we have a great deal more peace of mind. The time we spend together playing, singing, and hooting lacks that undercurrent of anxiety that has been so prevalent for the past 5 months. When I look in your beautiful blue eyes, I can afford to appreciate you more and more as my daughter without being so concerned as if you were a patient. I love singing, smiling, and playing with you every day and watching you grow and learn. I marvel at how your charming smile has inspired so many to do such wonderful things.

I love you, Little Getty Owl!

Happy 10 months!

Nappy Time

Nappy time!

Guest Post: Teagan Interviews Getty

From Kate:

Almost 2 months ago, Rici Reid from Teagan Tales, ran a half-marathon in honor of Getty and her sweet friend Sophia. While Rici trained for the run, she obtained donations and those donations ultimately were graciously given to Sophia’s Cure. Since the run, Rici and I have remained in touch and I can say that she has turned into a dear friend. Her dear Teagan just turned 1 and she is such a sweetheart. I asked Rici to be a guest blogger today so you can get to know her and to also read the interview between Teagan and Getty. Thank you so much Rici!

Hi there! I’m Rici, the mommy blogger over at Teagan Tales.  I came across Getty’s blog by what I’d call divine intervention.  I can’t recall how I came to the blog but I can remember that as soon as I poured over the entries and information I felt an instant connection and need to help spread the word about SMA.

Over the last few months I’ve grown very fond of Kate and sweet Getty Owl.  I’ve “introduced” Getty to Teagan and Teagan has developed a sweet fondness for Getty and considers her a new favorite friend.  Basically, Teagan and I have become quite fond of Getty and Kate.  A week or so ago Teagan “asked” if she could interview Getty for our blog and both Kate and I loved the idea so Kate and Mark helped Getty answer Teagan’s questions.  It’s a super sweet friendship that Teagan and Getty are developing and I can’t wait until they meet and watch some cute owl cartoon in their tutus.

The interview was posted on our blog but Kate and Mark asked if we would share it on Getty Owl’s blog as well.

Hi Bloggy world!

I’m Teagan.  The one my mom tends to talk about a LOT on Teagan Tales.  My mom “met” Getty and her family first and introduced me.  Now Getty and I are friends.  My friend Getty has a disease called SMA (Spinal Muscular Atrophy) which is what she is “known” for around the internet.  I don’t really think about that part when I think about my friend.  I think about, well, my friend Getty.  I wanted you all to get to know her too.  So, I asked my mom to type up some of my questions and Getty’s mom and dad helped her answer them.  Neat questions like her favorite color and why she is called Getty “Owl”.  Also some kind of important questions about SMA and what it’s really like. One of these days I hope to get to see Getty in person.  I bet we’ll both be wearing tutus and cuddling up with our stuffed animal owls while watching a funny cartoon together.  Because you see I love owls too.  That might be another reason why we’re such good friends!
Well, I’ll let you read the questions I asked and the answer she gave now.
Love,
Teagan
1) Why do your mommy and daddy call you Getty “Owl”? Because when I was born, mommy thought I had a wise old soul. I didn’t fuss, I didn’t complain, I was happy to be here. Mommy and Daddy taught me how to “hoot” when I was two weeks old and I have been hooting ever since. I have big blue eyes like an owl.
2) What is your favorite color? Blue, like my eyes.
3) How many owls do you have? I have over fifty friend owls in my room. We talk all the time.
4) What is your favorite book? Mother Goose Nursery Rhymes, my mommy reads it to me every night.
5) What is your favorite thing to do with your mommy? We like to talk about all kinds of stuff.
6) What is your favorite thing to do with your daddy? We like to sing together. Daddy sings me songs all the time.
7) What is SMA? It is something I was diagnosed with when I was even smaller than I am now and it keeps my muscles from getting strong. But it also means I get lots of extra special love and attention from my mommy and daddy.
8) How do you eat exactly? Can you taste stuff? I get to eat through a tube in my tummy. Mommy let’s me suck on fruit once in awhile and I like that.
9) How do you take a bath? Mommy and I take baths together. She holds me while I get to move my arms and legs around. I like when mommy moves me back and forth in the water, I feel like I am swimming.
10) What is your “brother” like? Cooper is always around making sure I am safe and happy. He licks my face all the time and it makes me giggle. He also likes to cuddle with me.
11) Do you have a favorite doctor? Dr. Givant, she is silly and she always makes noises with me.
12) Are you scared when you have to go to the hospital? No, not at all. All the doctors give me lots of attention and they take good care of me.
13) What kind of music do you like? I enjoy when mommy and daddy sing to me and I also like Edith Piaf. I don’t know what she is singing about because it is french, but I always sing with her.
14) What do you want people to know about SMA? I want people to know that with enough money for research, it can be cured.  Even though I have SMA, I am a happy girl who loves to live every day right next to my mommy and daddy.

Meet Team Getty Runners: Kristi

From Kate:

I seem to always be excited for Wednesday’s to come. It  gives me a chance to introduce the world to some amazing warriors that are willing to put their running shoes on to train for a marathon in honor of our little Getty as one of the Team Getty Runners. Today’s runner is an amazing mommy, without a doubt the biggest Duck and Dave Mathews Band fan and equally terrific wife. We are lucky to know her and her family. Tonight I want to introduce you to Kristi Carichoff.

Name: Kristi
Age: 35
Birthday: June 25
Favorite Colors: Green and Gold!
Hobbies: Family time, exercise, writing
Have you ever ran a marathon? No
Had you ever heard of SMA? Yes

I am happy to support the Mathany-Storm family and others who are battling this horrible disease. I am a lover of music (Dave Matthews, please), sunshine, the Oregon Ducks, and my cool little family. I work part time as a paralegal and have a great husband and 5 year old son. Go Team Getty!

Kristi, we can’t thank you enough for committing to helping raise awareness for SMA. Ever since Getty’s diagnosis you have been a warrior and we are simply humbled and inspired by your motivation. Hugs and kisses to Mr. Andy.

Oh Yeah … Diapers!

From Kate:

Monday, Getty and I went to her sleep study at the Kaiser sleep lab.  Mark was staying home to look after Cooper.

It was a routine overnight sleep study to monitor Getty’s breathing and other things while she slept.  They would measure all kinds of things, but the biggest issue was whether her bipap settings would change based upon the sleep study. Apparently, the monitoring equipment in the sleep lab is better for a full sleep study than the equipment used to set her bipap up in the PICU.

We established the January sleep lab appointment right before Getty’s surgery last November. We have been eagerly waiting to get this study done so we could learn more.

The appointment started at 7 p.m. About two hours earlier, Mark and I started packing for the one-night stay.

Now let me start by saying that although it is just a one-night stay, one night for an SMA family means so much more than you might think. I am going to make an assumption that for most parents, overnight packing for a child might include clothes, food, diapers, wipes, perhaps medicine, and some toys. I am sure I am forgetting something, but in my mind that sounds like a reasonable amount of “equipment” to get a little bugger through the night. Also, be aware that the sleep lab is not equipped like a PICU with all kinds of things; it’s basically just a bedroom with motoring devices in it.

So the packing began. We loaded up the suction machine, oral suction catheters, olive tip nasal suction catheters, suction power cord, suction carrying case, pulse oximeter, pulse ox power cord, pulse ox probes, Kangaroo Joey feeding pump, feeding bags, decompression tubes, feeding pump power cord, venting tube, Farrell bags, Trilogy 100 bipap machine, bipap mask, bipap power cord, humidifier, bipap tubing, cough assist machine, cough assist tubing, cough assist masks, cough assist power cord, stethoscope, Neosporin, Q-tips, thermometer, Tylenol, Miralax, feeding bottles, formula, PJs, t-shirts, pants, socks, blankets, toys, stuffed animals, books, iPad, musical seahorse, and baby wipes.

I stood in Getty’s room after what seemed like an hour and a half of packing and scanned the room. We have packed everything to protect her lungs, we have provided for her tummy, and we have packed toys comfort her. Have I missed anything?

Then I saw them. I had forgotten Getty’s diapers. Oh yeah … diapers!

I just stood there and cried. I was just overcome by how tired I was, I think. At that moment, I just wanted to be a “regular” mom who got to just fill a diaper bag with the bare necessities to get through a night. I felt envious of mothers who didn’t have to constantly think about whether their child’s sats would suddenly drop. There must be such comfort in not even thinking that could even happen. I wanted to be able to stress about just diapers out of concern whether she might wet herself, not forget to pack diapers because I was so concerned about whether her lungs were clear.

We packed up the car, we put Getty in her car bed, and we were off for a girls only slumber party. We got to Kaiser and Mark and I unloaded the goods. We set Getty up with a few episodes of Fish Hooks and she was snug as a bug. Once Mark left, the two of us hung out and got to sleep in the same bed. Quality snuggle time I tell you. The sleep study lady came in and put all kinds of probes on Getty’s body. Getty looked on in amazement as each probe connected to her body. Some were blue, some were green, and some were red. Some has adhesive backing, while others were pastey and gooey.

And like you would of guessed, Getty just rolled with it. She loved the attention. Bedtime was earlier than usual that night. We were in bed by 9 p.m. and asleep by 10. We got the wake up call around 4:30 a.m. and Mark was back to get us by 5 a.m.

We packed up our stuff and headed home. We got Getty back in her own bed as quickly as we could. We then started the process of disinfecting EVERYTHING.

We should hear soon how the sleep study went. More sleep studies to come.