August is coming very soon and I wanted to get some really exciting news out and fill everyone in on what events will be happening to help spread SMA Awareness, since August is National Spinal Muscular Atrophy Awareness Month.
Every day seems like that for us over here, but for those that might not know about the #1 genetic killer of young children, we really try and hit it hard this month in particular.
I can’t tell you how great it is to educate people about SMA. I know people are not racing to their doctor to get carrier tested, I am sure that the very next conversation someone has after seeing us is probably not about SMA, I am sure people do not race to their computer to look up our website to find info about SMA. But it does feel good that those three letters, S M A is getting out there. And for this month, in particular we tried to find great activities for people to attend so they didn’t feel like we were stuffing SMA down their throats, but rather being advised and then they can decide what to do with the information.
So carrying on with that thought. We will be having the 2nd Annual Hoot the Grid, on Saturday, August 11th, hosted again by the very generous, AJF Salon. Adam and his team have been so gracious to us for the past two years, we are really looking forward to working with them again.
If you would like to see check out last year’s event, go here.
Our intent with this event is to put a face to SMA. Children and adults that live with this disorder are incredible human beings. They are warriors that make a difference in this world, and they make some incredible art. Their families and friends who support them and honor them also are just as heroic, and create amazing works of art. The artwork comes from all over the US with a couple from our very own resident warrior, Miss Getty.
Over 50 pieces of art will be framed and displayed throughout the salon and will be offered for sale.
Along with the art, there will be a silent auction for people to bid on.
This year we have added live music. We are so excited to have Singer/Songwriter, Clemon Charles to be a part of the event.
This event is open to the public. Adults and children of all ages are encouraged to come.
Last but not least, we will be offering event t-shirts for $5.
Last year we did an Owl Scavenger Hunt. While it went well, we felt that it confined our participants to a certain time frame. So this year we are doing things a bit differently.
From 5-9pm, you can come by AJF Salon and we will give you, your t-shirt, bracelets and SMA Fact Cards to distribute throughout the 2nd Saturday Artwalk. Hopefully that gives people more flexibility to pass out information and also get back to the salon with plenty of time to buy some art, have a beer and cupcake. 🙂
So to wrap up here are facts:
2nd Annual Hoot the Grid
Saturday, August 11th
5-9pm: Volunteers for SMA Awareness Walk. Stop by AJF Salon first to get your shirt and SMA stuff, shirts $5. Deadline for t-shirt order is next Monday, July, 30th.
7-9pm: SMA Awareness Art Auction @ AJF Salon.
We would like to thank all of the sponsors for making this event possible.
All proceeds benefit Getty Owl Foundation. Last year we raised over $5,000, which is simply awesome!
We hope our 2nd Annual is just as exciting, inspiring, and worth everyone’s Saturday night.
If you are interested in buying an event shirt or have any questions, please email me at firstname.lastname@example.org
Till then,we hope to see you there.
It has been a long time since I have really updated on Getty’s health, her activities, her everything. So I wanted to update for the sake of updating.
In a nutshell things are good. We are very blessed to have a vibrant little one that just overwhelms us with love. Her will as such a strong fighter amazes us everyday.
Since Getty and I are “roommates”, she has gotten very good at letting me know when she is awake or if she needs repositioning. Since she lacks the ability to roll over on her own, she let’s me know when it’s time. When she was younger it used to be a little whimper. Now it is a full on yell. She does not mess around. I used to just hear muffled noises, but if I listen very carefully she is saying, “MOM!”. If that doesn’t get me out of a sleeping stupor, I don’t know what does. I am so thankful she can be so verbal with me and I also love the demanding part of it as well. 🙂
Usually she only needs a few repositions throughout the night, but lately has seemed like every other half and hour she would yell at me. I was trying to remedy that as quickly as possible for her sake and for mine. Before she had needs like this was because she had bananas in her diet, to which is now is a huge no, no. So since I had not added anything new, I couldn’t figure it out. Until after many wonderful SMA mommies mentioned is she hot? Here I was in the middle of summer putting all kinds of clothes on her. Duh Kate!
So I stripped her down to her skivvies and guess who slept awesome? Another lesson learned. Who knew she loves being naked. 🙂 Our kids also have a hard time regulating their body temperature, so while our house temperature is set at 67 degrees, she can still be very hot. So since the nakedness, we both have been sleeping a lot better. She only yells me about three times a night, which I appreciate.
Getty’s diet continues to do wonders for her. Again, I am not sure where her health would be if we had not made that switch. I know for a fact she would be overweight, breathing way too hard and tiring herself out, immune system would be shot and we might be seeing the doctors more. As it stands and if everyone can knock on wood, we have not been back to the hospital. We see her doctors on a quarterly basis and sometimes bi-annually. Depends on why we are there and who we see.
Getty has a new pulmonologist and we are still doing the “do we trust you” dance. So far she has been pretty open to our knowledgeable and assertive craziness. Other than that, most of our correspondence has been through email with all of her doctors.
Most of the time when we do go for an appointment, it is for blood draws. And so far her metabolic levels have been great. We check for all kinds of things, I wont bore you with all of the labs, but again, Getty is a trooper. As long as the iPad is on, she hangs out and seems to not care that she is getting blood drawn. Last time we were there, the lab tech that was drawing her blood said in astonishment, “doesn’t she cry?” And I responded with, “no, if Elmo is on, the world does not exist.”
Getty received a new TSLO (chest brace) from Shriner’s. She simply grew out of the last one and we wanted to get another kind of brace this time that was both custom but also stronger to keep her upper body in line. It has proven to be great for her. She looks more stable in her stander and that is what we were hoping for. We thought she needed updated AFO’s (ankle braces) but it turned out that she just needed to be remolded a bit.
Getty uses a bi-pap machine when she sleeps overnight and for naps and so far, her settings have not needed adjusting.
I think you could consider Getty non-verbal. She makes tons of noises and coos, but the formulation of words is still in the process stage. Her words are often muffled. But we are finding that when we ask her to mimic us, she will, but with her own sound. Her actual words will come out sporadically. She has enunciated “dada”, but when we ask her to say, “dada” she clams up. 🙂 There was one day when I was in the office and Getty was with Angie in the living room and she said “mom” a few times, to which I cried my eyes out. We also said, “all done”, and she came back with “ah dun”. So hearing Getty progress is awesome!
I can’t help but attribute this increased verbal communication to her new teachers. The school district have in home teachers that come to play and communicate with Getty. It is awesome! While they are here, I stay out of the picture, but just close enough to suction if need be. But she loves them and I know it is helping with her verbal skills. Mark and I have just grown so accustomed to doing everything for her that I know she knows she doesn’t have to say anything to get what she wants. Something that we both need to work on. But with her teachers she needs to respond, and it is so awesome watching her interact with new people.
Now we are having to weigh out the pros and cons of having them come during RSV Season. We are still working on that decision, but in the meantime she is loving it and I don’t want to remove these experiences from her. They aren’t mommy and I think that is what Getty needs right now. I am always, “up in her business”, and I think she is getting to an age where she wants to explore with new people.
Getty’s garden is growing leaps and bounds. Her victory garden has gone from little spindly flowers and vegetables to a mass of beautiful flower, full of color and growth. Her veggies have almost taken over the whole backyard. Pumpkins, tomatoes, cantaloupes, corn, you name it, it is growing out there.
Getty is enjoying watching Sesame Street, like a lot. She loves the songs and Elmo. That voice of his makes her smile and also mesmerized at the same time. Mark and I are a bit “over” Elmo, but it sure makes her happy. She is also enjoying Super Why and Thomas the Train. Those two we actually enjoy watching with her. 🙂
Getty is growing leaps and bounds. She is now fitting 4t clothes. She can still fit 3t, but it is a snug fit. I can’t believe how big and long she is getting. We have a giraffe on our hands.
So those are some updates about Getty. We are just so thankful to be updating on her progress. She is such a little lady and in the same breath, such a ferocious fighter. Everyday is an absolute gift.
Sacto MoFo is a well known event and organization that “circles the wagons” with gourmet trucks full of great food and drinks for the whole family. This Saturday from 11-7pm under the freeway on 6th & X Street.
Getty Owl Foundation’s booth will be there to distribute SMA information and giveaways. There will also be some of our GETty Crafty, craft vendors there to add to the event. Here is a sneak peek at some of their wares.
So come on by and stay for some awesome food and drinks, live music, stop by our booth and give Stacey a “high five” and buy to your hearts content from some very cool GETty Crafty vendors.
See you Saturday.
Summertime is special for many people but especially so for SMA families. The risk of illness is lowered, and we can breathe a bit easier going out in public.
In summer 2010, Getty was diagnosed with SMA. In summer 2011, we ventured out to Monterey for a weekend where Getty caught a cold and ended up in the hospital for two weeks. We have been determined to make summer 2012 special for her. So far, so good.
My older brother and Getty’s uncle John, aunt Leslie, and cousins Rachel and Sarah drove up from Orange County to visit us in Sacramento. Getty had never met them before, and we were all so happy to see them.
We had a great time eating with Getty inside a restaurant, which is a big deal for us. The risk of illness always lurks in our minds in enclosed public places. We are on constant watch for germs and armed with sanitizer.
We had a great time touring Sacramento and Davis, having some poolside drinks, catching up, and spending time together. Mostly, we are so happy Getty and her extended family could meet face-to-face.
We set aside a weekend to take Getty to San Francisco Zoo. We spent a Saturday at the zoo, and it was fun! Getty loved seeing a variety of animals and plants, and soaked up the cool fresh air. She especially loved the petting zoo because she could get right up close to the goats. She pet a legless lizard, a turtle, and saw a couple of owls. She got tired, so we zipped through the second half of the zoo, and decided to pass on the Australia, South America, and big cats exhibits.
When Getty was napping, I was frustrated and disappointed in the zoo trip because Getty had an opportunity to see kangaroos and big cats, but missed out. Then I realized I was projecting what I wanted onto Getty. The point is not what I wanted her to see but hat she went to the zoo and had a great time seeing the things she saw, even if she never saw a kangaroo or a tiger.
Friday and Sunday were spent packing, driving, unpacking, handling medical equipment, set up, take down … a ton of work! It was a fine trip, but Kate and I were more tired after our “vacation” than before. Getty had a lot of fun getting out and about, so we’re happy.
As I mentioned, last year at this time, Getty was just being discharged after a two-week stay due to a summer cold. As Getty laid in bed sick on July 4th, the best Kate and I could do for fireworks was to catch a few glowing remnants of fireworks that were just out of view of the PICU window. This year, we had our own fireworks show, and Getty loved it!
I told her George Washington lit some firecrackers and scared the British away. When the wind kept blowing out our matches, I told her that’s what happened at Bunker Hill. That’s close enough, right?
I’d say Getty has had a great summer, and it’s not over yet!
Before I start on all the fun Getty Owl Foundation events, Mark will be blogging about our awesome trip to the San Fransisco Zoo and our 4th of July Spectacular in the next few days. So I wanted to sneak in some fun activities for everyone in the very near future. By the way, Getty loooooooves fireworks. 🙂
Okay so August is coming very soon. August is National SMA Awareness Month and we try and take every advantage we can to spread the word about SMA in our community and to anyone who is listening, really. 🙂
So I will go in timeline order:
Saturday, July 21st from 11-7pm under the freeway.
GOF will have a tent at Sacto Mofo. Have you been to one of their events? Holy cow you need to. Picture a whole bunch of gourmet food trucks. Literally a little bit of everything for your palette. Drinks, music and on the 21st, our GOF tent and handmade crafts.
2nd Annual Hoot the Grid
Saturday, August 11th from 7-9pm @ AJF Salon
We are so excited to put this event on again this year. Plans are pretty much ready to go. Here are the details for the night. I truly hope you can join us. We will be doing the SMA Awareness Walk before hand from 5-7pm and then from 7-9pm we will hold our SMA Art Auction. We thank AJF Salon again for their generosity of hosting this year once more.
Complementary food, beer and wine will be served. Live music and a silent auction will also be a part of the festivities. All the art was created by people, families, and friends affected by SMA. While this is a very emotional night, it is also a night where we celebrate the lives of so many gallant warriors and angels. We celebrate the fact that we will all fight to end SMA. SMA can affect anyone and this night is to make people aware that this is “our” fight as a community, not as a isolated population. So come on down and have a great time. As always it is open to the public.
SMA Awareness Night @ The River Cats
Saturday, August 25th
The River Cats have been so great to us. They are so generous to give us one night to celebrate SMA Awareness Month. Can you imagine having one night of a a captive audience to help educate people about SMA? I have goosebumps. Here are the details. I hope you can join us. You can buy tickets directly online, which is an easier option then we did last year. Let’s help pack that stadium and show support for The River Cats and SMA Awareness.
Last year, while on my 5th cup of coffee I thought of Tell 5!. The idea was that I would send out a packet of 5 SMA Fact Cards along with 5 GOF bracelets to anyone that wanted to spread the word. It was a big hit. I mailed about 600 cards and bracelets. I got great feedback from people who received them. They told me really cool stories about their experiences of educating people about SMA.
So I am doing it again this year! And I am going to be very original and innovative and call it, Tell 6!. 🙂 So same idea as last year. I don’t care where you live, I will mail you out a package. All I ask is that you pass them out and educate 6 people. And double high five if you can get someone famous to educate. 🙂
So contact us and let’s spread some SMA education.
Lots going on and lots to do. We thank you in advance for your support. If you cannot attend any of our events, I only ask one thing of you. On August 11th at 8pm we light a candle for all of our SMA angels and warriors. If you can, we would greatly appreciate the effort and support to light a candle.