Imagine you've been diagnosed with an incurable genetic disease and you are told you will not only lose your ability to walk and move your arms, but you will die between now and the next 18 months. What would you do?
My name is Avery Lynn Canahuati, I'm almost 5 months old, and this has become my reality. But before I die, there's a few things I'd like to accomplish...this is my bucket list and my story.
SHARE IT & HELP ME TELL THE WORLD ABOUT SMA!
Each time I post an update, please share my story by updating your social networks, e-mailing all of your contacts, and talking to your friends/co-workers. And to all my girlfriends out there, tell your Ob/GYN about my story and maybe they'll routinely start offering SMA testing. If we can help save a few of my future friends and their mommy, daddy, and loved ones from SMA, then my life, while cut short in time, will be beyond fulfilling in stature.
Thank you to the Sugar Land Skeeters coaches, players, and staff for letting me throw out the first pitch at your game last night and in honor of SMA awareness! Everyone was so kind to me and my mommy & daddy and I'm not sure if I had anything to do with it, but we won the game 10-1.
Not the best quality video, but notice the catcher doesn't move his mitten.
A couple of my SMAns (SMA + Fans = SMAns)
Every pitcher naps before the big game. Right?
Daddy is making me say the mascot was a real
pest and he kept bugging us...ugh he's sooooo cheesy
and such a dork.
A lil pre-game back rub never hurt.
One at a time boys. One at a time!
Coach Gary Gaetti - mommy had no clue, but daddy seemed
to know who he was. All I know is he was super nice!
Daddy I'm not a puppet, I'm a pitcher.
Waaaaaaaaa...I want to throw my curveball!
Mommy & daddy escorting me down the mound towards home plate.
Stttttttttttttttttttttttrike!
Why on Earth anyone wants to put a mask on this guy is beyond me.
Daddy, please face me the other direction. Hubba Hubba!
I'm on top of the world! Well perhaps just daddy's shoulder again!
Items I Can Scratch Off My Bucket List:
1. Go to my first baseball game 2. Throw out the first pitch at a baseball game 3. Throw a strike...whatever that means. 4. Have thousands of people cheer for me at once 5. Shake hands with super hot baseball players. 6. Meet some of my SMAns.
Up Next: Whatever I bring to life, because I don't have time to wait for life to bring anything to me.
Don't forget to share my story by following & forwarding my blog, following me on Twitter (AveryBucketList) and Like Me on Facebook (Averys Bucket List)! While it may or may not help me in my lifetime, the more people who are aware of SMA, the less likely future children will be born with SMA, and the more likely there will one day be a cure for children who already have SMA!
If you feel comfortable making monetary donations directly to a registered non-profit organization, mommy & daddy strongly encourage you to please do so in my name to the following organization:
Each time I post an update, please share my story by updating your social networks, e-mailing all of your contacts, and talking to your friends/co-workers. And to all my girlfriends out there, tell your Ob/GYN about my story and maybe they'll routinely start offering SMA testing. If we can help save a few of my future friends and their mommy, daddy, and loved ones from SMA, then my life, while cut short in time, will be beyond fulfilling in stature.
Today started like most days, I woke up, ate breakfast through my glam-tube, took a bath, and then checked my blog to see if anyone is reading my story and helping me spread awareness about SMA. Well, when I woke up yesterday I had 480,000 pageviews and as of right now I have 1.29 million pageviews (and that number is increasing by about 2.5 pageviews per second). Holy...Shitake mushrooms??? Umm, I'm not certain, but I believe they are with the rest of the produce sir. Ugh sorry, do I look like work here? Anyway, where was I?
Oh yeah...I also noticed there were a lot more blog comments, online articles, Facebook Fans, and Twitter feeds about me. So thank you to everyone who has been following me and everyone who just started following me. Don't forget to share my story with everyone you know! But make sure when you tell people about me, you tell them I'm not dying, I'm living...and they should be too!
Now before I tell you all about my last few days of fun, I want to make sure you know that just because two people are carriers of the SMA gene doesn't mean they can't or shouldn't make friends for me. All it means is that if they go about making me a friend the natural way (ewww yucky), then they KNOWINGLY stand a 25% chance that my friend will be born with SMA and a 50% chance that my friend will be born as a carrier of SMA. Their alternative to making me a friend without doing it, tee hee no pun intended, the natural way (again, ewww) is to pay for something called In Vitro Fertilization...whatever that means.
In all of this, just remember, I'm a 5-month old, well actually I'm 5-months and 17 days, so technically I'm like 5 and 1/2 months old, but my point is, don't take it from me. ASK YOUR DOCTOR and then you can proceed making the best decision for yourself & your family based on everything you know and whatever you believe in. As for my mommy & daddy, they are doing everything they can to show me how to live free and enjoy life as it's been given to me. And I think my daddy summed it up best when he whispered in my ear, "Scuttlebutt, your mommy & I love you just the way you are. And always remember, you can live life dying or you can die living life. It's your choice."...whatever that means.
Here's my last few days:
I opened a birthday gift from a stranger! Thank you I love it!!!
The first family sent me a get well soon card & picture.
I like their smiles and they look good for being the first family ever!
I got a new stroller from Families of SMA. Don't tell daddy, but
I think he messed up because there is no radio & it doesn't fly.
Mommy said she'd get in with me if her legs weren't so long.
Daddy said ... just know he lost 2 points for his commentary.
I'm somewhere in there I promise! Oh and
I love my pinwheel!!!
Roll it up...pat in the pan...
Domino!
Whoever said getting a tattoo doesn't hurt is a liar!
Mommy & daddy had to sedate me after my tattooing.
A stranger had a lemonade stand in my honor and sold 3 cups
for $48! Daddy wants to know what was in that lemonade!
1,000 smiles :-) Now that's creative!
Lastly, I want to say THANK YOU to everyone who has shared my story, put on fundraisers, and sent me letters, cards, gifts, donations and other fun stuff in the mail. While I can't begin to thank everyone individually, I did want to send a special thank you to Ms. Wright's 5th Grade class in Browns Valley, CA for all my sweet letters of encouragement. So thank you Ms. Wright, Jordan, RJ, Alice, Trevor, Michael, Alexa, Grace S., Andrea, Adam, Morgun, Jacob, Grace M., Wyatt, Logan, Dillan, Matthew, Jessica, Robert, Faith, Hallie, Liam, Claudia, Carissa, Cody, Leticia, and Austin. Mommy & daddy read all of your letters to me and they definitely made me think about how lucky I am to have such great friends I've never even met from California!
Items I Can Scratch Off My Bucket List:
1. Open a birthday gift from a stranger
2. Teach the first family, and hopefully not the last, about SMA
3. Build something with my daddy
4. Play with a pinwheel 5. Mold my hands for mommy & daddy 6. Get my first tattoo 7. Get 1,000 smiles mailed to me 8. Inspire an entire family to work together to help me spread awareness 9. Inspire an entire 5th grade class of my friends to write to me.
Up Next: Take me out to the ballgame & then whatever I bring to life, because I don't have time to wait for life to bring anything to me.
Don't forget to share my story by following & forwarding my blog, following me on Twitter (AveryBucketList) and Like Me on Facebook (Averys Bucket List)! While it may or may not help me in my lifetime, the more people who are aware of SMA, the less likely future children will be born with SMA, and the more likely there will one day be a cure for children who already have SMA!
If you feel comfortable making monetary donations directly to a registered non-profit organization, mommy & daddy strongly encourage you to please do so in my name to the following organization:
Each time I post an update, please share my story by updating your social networks, e-mailing all of your contacts, and talking to your friends/co-workers. And to all my girlfriends out there, tell your Ob/GYN about my story and maybe they'll routinely start offering SMA testing. If we can help save a few of my future friends and their mommy, daddy, and loved ones from SMA, then my life, while cut short in time, will be beyond fulfilling in stature.
My mommy and daddy tell me I'm more of a morning person, because I'm always smiling when I first wake up. I never really paid much attention to it, but I suppose after seeing my morning photo compared to my mid-day photo, I would have to agree.
You think you've had bad hair days?
This much I do know, my oxygen levels and heart bpm's (beats per minute) are almost always lower in the early mornings, mid-day, and evenings than they are in the late morning. I think I'm going to have to give up my late morning soap opera's, because my oxygen drops and my blood pressure rises whenever I think about the fact I'm relegated to watching All My Children re-runs. And don't eeeeeeeeeeven get me started about how Susan Lucci only won 1 Emmy after being nominated 21 times.
That's probably why my levels went crazy and I ended up back in the hospital on Tuesday morning, but mommy & daddy seem to think it's because they were misinformed as to how fast and how much milk they should feed me through my new Glam-Tube and it was causing major reflux issues which effected my swallowing and breathing.
Everything is OK now though because mommy & daddy are using a pump which they can set how fast and how much fluid should go into me at one time. I'm definitely happier and breathing better with my new feeding schedule (60 mL of fluid over 30mins) compared to my previously inaccurate feeding schedule (90mL over approx. 5 mins). And while I'm no math whiz, that really seems like a BIIIIIG difference (at least my body thinks so).
But hey it wasn't all bad, because I got to ride in an ambulance with two muscular firemen who wouldn't take their eyes off of me. If they're reading, hi guys, thanks for the ride, and you know where I live so don't wait for me to call you next time, just come on by and say hello! Also, I met a fan who told mommy and daddy she's been following my story and that she met a superstar that day. I swear, if Brad & Angelina had one of their fifteen kids in the hospital at the same time as me and noooooobody told me, then I am not going to be very happy.
Anyway, when I got home from the hospital I was definitely feeling a loooooot better so mommy & daddy decided what better way to help me forget about my hospital trip than to have some fun doing things from my Bucket List!
I talked to mommy & daddy, but I was mostly talking to my sponge bob square stick.
I played a joke on my Aunt Claire when I told her
she could ride my pinata piggy...tee hee
I ate a cupcake!
Mommy & I made a ball with Play-Dough!
That's a Blow Pop...mommy kept telling me to say
from Charms...whatever that means.
All in all I'd say Monday & Tuesday had their moments, but both went better than expected; hospital stay excluded. Tonight I think I'm going to record Grey's Anatomy, Private Practice, and re-reruns of ER so that mommy & daddy can get better acquainted with proper medical procedures in the event they are ever misinformed again. Items I Can Scratch Off My Bucket List:
1. Wake up smiling
2. Have a bad hair day
3. Ride in an ambulance
4. Get picked up by a fireman
5. Meet a fan
6. Talk to mommy & daddy
7. Eat a cupcake & a Blow Pop
8. Play with Play-Dough
9. Play a practical joke on someone
Up Next:
Whatever I bring to life, because I don't have time to wait for life to bring anything to me.
Don't forget to share my story by following & forwarding my blog, following me on Twitter (AveryBucketList) and Like Me on Facebook (Averys Bucket List)! While it may or may not help me in my lifetime, the more people who are aware of SMA, the less likely future children will be born with SMA, and the more likely there will one day be a cure for children who already have SMA!
If you feel comfortable making monetary donations directly to a registered non-profit organization, mommy & daddy strongly encourage you to please do so in my name to the following organization:
Each time I post an update, please share my story by updating your social networks, e-mailing all of your contacts, and talking to your friends/co-workers. And to all my girlfriends out there, tell your Ob/GYN about my story and maybe they'll routinely start offering SMA testing. If we can help save a few of my future friends and their mommy, daddy, and loved ones from SMA, then my life, while cut short in time, will be beyond fulfilling in stature.
Before I recap my last few days, I wanted to share some information sent to me by a few of my mommy's friends who called their separate insurance providers and asked about SMA testing. Here's the results:
Friend #1 - "We will cover the entire balance at no cost to you."
Friend #2 - "You will be responsible for a $50 copay plus 10% of the total balance due."
Quest Diagnostics offers the test for $950 when billed to insurance, so Friend #1 could be tested for FREE and Friend #2 pays $145 ($50 + $95) to find out if they are carriers of the SMA gene and stand a risk of their children being born with SMA or as SMA carriers. Ironically, and what appears to be the norm, neither of my mommy's friends had ever been offered the SMA carrier gene test.
Daddy told me when he was much younger, there was an angry Canadian woman who wrote a song about situations like this, so I looked her up on YouTube & apparently daddy isn't the only one who knows her.
On a somewhat positive note, daddy just got off the phone with his friends who'd just left their 23 week exam and before they could ask about SMA their Ob/GYN mentioned it to them. Their Ob/GYN knew all about me and said that SMA has become a hot topic of late and he felt compelled to start offering the test to all of his patients (new & old). My response to that is, way to go Mr. Ob/G, but why did it take 23 weeks into my daddy's friends pregnancy to make you feel compelled to mention SMA to them, when you should have been compelled years ago?
Daddy told me when he was younger he remembers waiters used to politely ask, "would you like desssert?" But now they bring out a tray with every dessert on it, let you see it, smell it, and then they tell you every last detail about pie, cake, mousse, brownies, ice cream, and creme brulee until you submit to the guilty pleasure of every bite until there's only one bite left...as if you're saying to yourself, it only counts if I eat the whole thing. My first thought was to say, whatever that means, but then I realized what daddy is trying to say is if we can convince waiters to shove dessert down our throats and provide us details about each one, then we should be able to convince doctors to force in-depth details about simple blood tests to us, especially when they can determine the potential risk for life altering/threatening diseases.
Then I reminded daddy that sometimes dessert, just like SMA testing, is FREE and who says no to free dessert? Then daddy told me that if dessert wasn't on the menu, most people wouldn't even know they could order it and the waiters probably would forget to offer it. He also reminded me that nobody likes a whining baby so I should stop myself short of getting back on my soap box and just tell everyone about my last few days...hey I know what that means!
Soooooooo here's a look back at my last few days since coming home 60 hours after my "less than an hour long, minor, in and out surgery" on Thursday...
Saturday Evening: After our long confusing day Thursday, an even longer day Friday, and then being told checkout was Saturday morning, we were all excited to be heading home. But then someone dropped a ball somewhere and because they fumbled, there was some confusion and mommy & daddy were told the earliest we could leave would be Sunday morning around 2-3am. It was about that time that mommy looked at daddy and said something about it was about to get ghetto up in here and she was going to throw some bows on people. I told mommy that sounds like fun, but since I have limited mobility in my arms and can't throw anything, would it be OK if I keep my bow right where it's at?
Maaaaaaaaaaaandela!
About 30 minutes later, without any bows being thrown, a very nice doctor came in and told us they found the ball that had been dropped and we were free to leave. Daddy whispered to me, "did they say we can leave for free?" - he's soooo silly.
We came, we saw, we partied like Rock Stars!
Even Rock Stars have to sleep!
I was stinky so mommy gave me a sponge bath when I got home.
Sunday:
After a good night sleep in my crib, it was time to rise and shine and say hello to all of my toys, but apparently I was so out of it after coming home from the hospital last night that I didn't even realize my room had been redecorated. Personally I liked my room better the way it was before, but don't tell mommy & daddy because I think they spent a lot of money on the changes and I don't want to offend them.
Before
After
Once I became accustomed to my new "crib", I had to get ready for a fundraiser in my honor at Auntie Pasto's restaurant in Bellaire, TX. As it turns out, I wasn't able to attend, because my mommy & daddy wouldn't let me since I'd just gotten out of surgery the day before. Mommy & daddy did tell me there were a lot of people there who were thinking of me and wanted to know how I was doing. In fact I was told the restaurant had people waiting out the door, they had to stop taking to-go orders because the kitchen couldn't keep up, and their credit card machines & computers crashed for over an hour. When it was over, the restaurant owners said they'd never been that busy in 20+ years of being open for business and it was evident everyone wanted to be a part of my fundraiser. Thank you to everyone who helped put my fundraiser together, showed up, called orders in, and to Auntie Pasto's for being gracious hosts!
Items I Can Scratch Off My Bucket List:
1. Make an impact on a doctor to mention SMA to his patients. 2. Wear a big bow on my head 3. Party like a Rock Star 4. Get a sponge bath 5. Redecorate my room 6. Have an SMA Awareness fundraiser thrown for me
Don't forget to share my story by following & forwarding my blog, following me on Twitter (AveryBucketList) and Like Me on Facebook (Averys Bucket List)! While it may or may not help me in my lifetime, the more people who are aware of SMA, the less likely future children will be born with SMA, and the more likely there will one day be a cure for children who already have SMA!
If you feel comfortable making monetary donations directly to a registered non-profit organization, mommy & daddy strongly encourage you to please do so in my name to the following organization:
