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?
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| 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.
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| We came, we saw, we partied like Rock Stars! |
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| Even Rock Stars have to sleep! |
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| 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.
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| Before |
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| 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:
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