So yesterday is what I like to call an NFD, which means a No Fun Day. I learned to call day's like yesterday NFD's instead of anything else because when leaving the hospital yesterday I said "Today sucked! Sucked, sucked, sucked!" and my daddy immediately told me to not use bad words and that I was grounded, grounded, grounded. Apparently my definition of grounded and daddy's are toooooooootally different because he became even more mad at me when I thanked him for telling me I'm mentally & emotionally stable; admirably sensible, realistic, and unpretentious. He responded, "Don't you get smart with me young lady, you know exactly what I mean." ...My response to him, "Yes sir.", but under my breath I was saying "whatever that means."
This was my yesterday...
After my show was over, mommy put me in my bobsled that my main squeeze Cooper McDreamy gave me...uhhhh such a heartthrob...and then me, mommy, daddy, G-Pa, and Nana Sandi all went to meet my new doctors.
|"They see me rollin, they hatin, Patrolling tryin to catch me ridin dirty."|
Ohhhhh, Dr. McSteamy, I thought you'd never ask, but out of respect for your wife, I think you should go call her while I ask my mommy and daddy for permission.
Mooooooom? Daaaaaaaaaaad? Pleeeeeeeeeeeease?
|Me & my friends on the inside, from left: Marcus,|
Diane, Chanti, Dalia, Dr. Farber,
Dr. Lotze McSteamy & me, mommy & daddy
Then they told mommy & daddy it's probably best I have something called a G-Tube put inside me. I know G-Pa & gee whiz and I know inner-tube & YouTube, but what the heck is a G-Tube? Why do I need one? And why are mommy & daddy sad again? Eventually mommy & daddy fought back the sadness and told me the following:
"Well scuttles, a Gastric Feeding Tube or G-Tube is a tube the doctors are going to put inside of you so mommy & daddy can put the right amount of nutrition into your body. They are having to do this because drinking mommy's milk is already becoming more and more difficult for you, you've lost 9 ounces since you were last weighed, and in time the SMA will continue to make your ability to swallow even more difficult. So we are taking the precautionary measures now instead of waiting until later, because Scuttlebutt without the G-Tube, you would become malnourished which would ultimately lead to many other potentially fatal problems." NFD. NFD. NFD.
It wasn't all sad news though because my doctors did tell me my oxygen levels are stellar! But with all the other news, the ride home really sucked for everyone...uh oh, oh no, oh no, pleeeeeeeease don't tell my daddy I just said that.
By the end of the day, I was just ready to go somewhere and be sad, but then look what was waiting for me outside my front door when I got home:
|Thank you Roslyn in Nashville!|
Thank you Angie, Trey, Georgia, Jack, & Elle in Houston
First my swing, now pink flowers :-)
|Mmmmmmm cake ball!|
2. Teach my daddy the definition of grounded
3. Ignore my parents while watching TV
4. Meet my new medical team
5. Get proposed to by a doctor (you see it your way, I'll see it mine)
6. Find doctors who show emotion
7. Lick my first cake ball
8. Get a dozen pink roses in the mail
A quiet weekend with my family in preparation for my TV & radio debuts on Monday. As I understand it, my mommy & daddy will be helping me tell my story to the following media outlets:
104 KRBE - Roula & Ryan Show (Monday, 8am)
FOX 26 News Houston (Monday, 9pm)
CBS 11 News Houston (Monday, 10pm)
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!