Getty Owl Foundation

Bittersweet Symphony This Life

From Kate:

I feel compelled to post this before Getty’s 1st Birthday. Friday is going to be so terrific for so many different reasons, and I don’t want the blues to consume me, so I thought perhaps blogging about it now would be kind of like a preemptive strike. Those work right? 🙂

I have been very emotional lately and I think it really comes down to a few things.

1st) Getty will be 1. When we sat in that neurologist’s room on that  fateful day in July, I honestly didn’t think we would be celebrating her 1st birthday with her. Our neurologist  had painted such a grim picture of SMA that I thought maybe we had a few months, if that. But here we are, and she is going to be 1 in two days; I can’t tell you how amazing that feels.

I can’t thank the SMA community enough for helping us care for Getty: supporting and guiding  us to ask the right questions to doctors who don’t educate themselves about this disease. I can honestly say, I attribute all of the vitality of our little missy to your help. She is healthy, she is thriving, and she is so incredibly smart. I am so blessed to be her mommy and to also have a chance to get to know her. So I thank you all.

Okay give me a second while I wipe my face of pure weepies. These are certainly tears of joy and tears of gratitude. We need to continue to all stick together and continue fighting for our babies, warriors, and angels. We need a cure like yesterday, so let’s keep pushing on!

2nd) I have been thinking a lot about life in general. I have moments of pure spontaneous meditation, when my body will be doing one thing while my mind is doing something completely different.

So today’s pause was about the meaning of life. I know, really deep, but really, what is the meaning of life?

Another thought was yes, SMA is a devastating disease and, not to trivialize, but if Getty’s life is theoretically on a “timeline”, well isn’t everybody’s? I mean just because she has a terminal disease doesn’t mean I am going to live any longer than she. I know this is sounding morbid, but stick with me.

What gives us (meaning just people in general) the right to not take in life as a gift every day? What gives us the right to assume we have tomorrow? I think that is really the point I have been learning for myself since this journey began. I don’t have any guarantees, so since that is the case, I need to live life to the fullest, and Getty has taught me that. She lives with such grace and I am so proud to be her mommy.

So what is the meaning of life? To live life like you may not have tomorrow would be my answer right now.

3rd) So turning 1 is certainly an awesome milestone. It is bittersweet to see our little girl getting so big. I’m serious, Getty is 23 pounds and 29 inches. They sure grow up fast. I wish time could stand still on Friday, but since it can’t, we will take lots of pictures and make tons of memories.

I hope Getty appreciates the crazy amounts of crepe paper that will stream across the house. I think I bought too much, but damn it, I am going to use it, even if we have some streamers in the bathroom. 🙂

I have also bought a few presents for her that I have restrained myself from showing her. I have already wrapped them. So that little sneaky snake can’t peek. 🙂

Morgan will be coming over to take pictures and my hope is to post on the festivities the following day. Then, after her birthday, we will celebrate 13 months, and 14months, and 15 months, and……you get the pattern.

I just want to thank everyone for all the kind well wishes Getty has received so far. It is so nice to know that you are thinking of Getty on her big day. We are equally so excited to see the birthday videos. Thank you Stacey for your awesome idea, and thank you for having Leyton set the bar so high with his tambourine solo.

Getty Emelia Storm

Born March 25, 2010 at 8:16pm

Happy Birthday Little Owl!

Let’s GETty Ready to Party!

by Stacey

Hello friends!  Can I just tell you that I have been waiting to write this post for months and cannot believe that we have our feet firmly standing in the week of Getty’s Birthday?!  We should all give out a big HOOT HOOT!

This Friday, the 25th, Getty will celebrate her 1st Birthday!  First birthdays are very exciting for any family, but for Getty even more so.  Sadly, because we are still in the midst of RSV season Getty cannot have a traditional birthday.  So, what better than a virtual birthday party!!!

What does a virtual birthday party look like?  Well, it’s full of fun and goodness of course.  Who is invited to a virtual birthday party?  EVERYONE!  That is what makes virtual birthday parties so exciting!  Here is how you can join the celebration.

Let’s start with the big one, make a birthday video for Getty!  Break out your video cameras, web cams, anything you can make a video with and record away.  This is the best way for Getty to see that you are at her party!  Once your video is made, you must upload it to YouTube and title it “Happy First Birthday Getty” and tag it with “Happy Birthday Getty” to make it easy to find.  Then, on Friday, when the video blog post goes up at 8am PST leave a comment linking to your video.  Getty will then get a chance to watch all of you wishing her a Happy Birthday!  What makes this even better…..there is a giveaway for all who enter!  Everyone who submits a video will be entered to win a Flip MinoHD 8GB Pocket Camcorder with case.  This prize is valued over $150 and is yours for the taking.  Here is an example of a video that Leyton and I made today!

[youtube http://www.youtube.com/watch?v=ZQisjJ81x4I&hl=en&fs=1]

There is no length requirement for your video and you can make it as fancy or as simple as you like.  The winner will be selected using random number generator and announced on Saturday morning.

The next piece of exciting news is that the “Lullabies for Getty – Sweetwater Child” album by Angela and Alex Dezen of The Damnwells will be releasing on Friday and available for purchase!  There will be information on how to buy on Friday as well as another giveaway for a $100 iTunes gift card!

Finally, we have 10 more prizes to giveaway throughout the day!  Items have been generously donated by some wonderfully crafty people.  All it will require of you is a comment!

So, make sure you get back here at 8am PST on Friday for our first party post and stay tuned all day as we party hardy with Getty!

Getty Videos D`jour

From Kate:

I uploaded a few videos of Getty.

The first video is of Getty of course. We wanted to make sure we captured her sweet “Bert” giggles.

Giggle Monster

The second video was captured last night. We put Getty into her arms slings and we helped her play with her tambourine. Mark played and sang along with her. Then at some point she literally fell asleep and Mark kept playing and singing in the hopes not to wake her. Yesterday she didn’t sleep as much as she usually does for her nap, so at this point she was beat.

Little Drummer Girl

Last video is her first encounter with Grover from Sesame Street. I bought her a Grover puppet for her upcoming birthday and I couldn’t stand it, I had to let her play with it already. I hope she has presents for her birthday, because this mommy can’t keep anything a secret.

Attack of Grover

I hope everyone is having a great weekend.

Our Lucky Charm!

From Kate:

In honor of St. Patrick’s Day, I decided to get Getty all nice and festive. She was such a good sport about it. So the following pictures are of our “photo session” together. I have also added a video. I wanted to show you the entire scope of her hair. If you notice she wasn’t very happy about being on camera, I was interrupting her Yo Gabba Gabba show. I tried really hard to get a smile, but alas she is a hard nut to crack sometimes.

Happy St. Patrick’s Day to everyone. Our pot of gold is almost one year old and she is the best treasure we could have ever wished for.

And last but certainly not least, the St. Patrick’s Day Video

St. Patrick Day Getty

Maiden Voyage

From Kate:

Getty had her monthly appointments today at Kaiser. Starting at 9am, Getty was to get her last Synagis shot followed by the gastro appointment and wrapping everything up with her pulmo doctor. This was our first outing as a family in the van.

BV: Before Van

BV it would take us a good hour to get everything ready to get on the road. A bit of supply packing, Getty would get her breathing exercises, situating the stroller in such a way so it would fit, put Getty in car bed, Pulse ox, etc, etc. The process would take a good 45 minutes. However today was magnificent. There was no playing of Tetrus to make sure all things fit in a little compact car, plus! Our frustration levels were considerably lower than usual, plus! And when all was said and done, Getty was snug as a bug in the back of the van in her car bed with Yo Gabba Gabba playing. Momma was near by but this time comfortably sitting near and not in a human origami position to maintain close observation.

Mark was the captain of the ship. Steering through the crazy down pour of rain,  he confidently and safety veered through traffic. I can’t speak for him, but I can say in my observations of him, that he seemed a lot less stressed than usual. 🙂

The doctor visits were very routine and non-eventful. That is a good thing! Gastro decided that Getty is gaining too much weight too fast. So the decision was to decrease her intake and see where she is in the next month. Our little sprout is “sprouting” too much.:) Gaining too much could potentially strain her airway and we want to make sure we don’t get to that point. Her g-tube is fine and doesn’t need to be changed out. Her thought was that by next November, Getty would need to get the Bard switched out for a bigger one, but we lots of time.

Our only question today for gastro was about diet. Since the 1 year mark is nearing, will her diet change to meet her nutritional needs. We know of a lot of SMA children that are on very specific diets to ensure  proper nutrition, so we will continue researching and figuring out next steps.

Our sweet Getty go the last of her Synagis shots. She is such a trooper. Listen, I am not a needle person, and I am always so in awe of her strength and resilience.  A tear here and there and then was otherwise ready to reunite with her Yo Gabba Gabba. We were hoping to hear that RSV season was nearing an end, however the nurse informed us that the season will most likely be over near the end of May. So we will just continue planning our trips and looking forward to those days and in the meantime lying low, staying healthy.

Last appointment was with pulmo. Getty will have her next sleep study in May. That will tell us if she needs her bi-pap setting altered at all.  About three weeks ago we purchased a new bi-pap mask for Getty. The original one that came with her machine has started to really do a number on her skin. We were finding that some skin was breaking down on her forehead. The new mask is so light and it hardly even touches her forehead so we are very pleased. One other benefit is that it doesn’t leak like the other as well, which is nice because it makes for a very quiet sleep for all of us. 🙂

Other than that he just checked her lungs and scheduled the next appointment. Like I said, uneventful, but for us, uneventful is great.

Appointments were done and we walked back to the van and were on our way home. The weather was remarkably bad today. The rain has been lingering for the past few days and seemed to give it, its best on our way home. I checked on Getty as we were about halfway home and she was sound asleep. I love to watch her sleep, such a peaceful state of being on her face.

We got home and unloaded the van. Got all of Getty’s necessities in order and we were off for a nap. Hearing the rain outside and snuggling with my babe, nothing better.