NFD #1

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.

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."

Before I tell you about my day I want to remind you that I'm sharing my story in an effort to raise awareness about SMA, teach prospective parents about SMA blood testing they can ask for prior to conception and what their options are if their future children are at risk of SMA.  But overall, in my life as well as in my death, I want to make a difference in the lives of others.  So please share my life story with everyone you know and have them do the same.

This was my yesterday... 

Before we left for a fun filled day at the hospital, my mommy & daddy let me watch my favorite show.  If I can see her, can she see me?  Peek-a-boo!  Peek-a-boo!

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."

When we got to the hospital we were running just a little bit late so daddy scooped me up and carried me to my appointment.  While we were waiting for the elevators from the lobby to go to the 3rd floor, only to take another elevator to the next set of floors, daddy and I stopped to take a quick picture (he told me not to post this one because he looks goofy, but I think I look gooooood and besides this will teach him to learn the proper use of the word grounded).  Daddy also kept saying, "Navigating this hospital is pretty much identical to the cheat code for Contra on the Nintendo...up, up, down, down, left, right, left, right..." ...whatever that means.

While we were waiting in the waiting area, mommy & daddy showed me these really cool fish tank thingies.  While staring at the fake fish I thought of two things...1) why are there waiting rooms at doctors offices?  If I have a 6pm reservation at a restaurant, my table is usually ready when I get there...with that said, mommy & daddy didn't seem to mind and were quite impressed we only waited 10 or so minutes.  2) Am I just being impatient because I've been "ridin dirty" since I got in the car?  This diaper isn't going to change itself people!

If Cooper is my McDreamy, then Dr. Lotze is my McSteamy.  He is my new doctor and this was my first time meeting him, but he already knew me because somehow he'd already read about me on the internet.  So I guess you could kind of say our relationship started online.  Dr. McSteamy is an extremely smart doctor who likes reading, long walks on the beach, and is very compassionate, attentive to me and mommy & daddy's needs & feelings, and just an all around nice guy...oh and I may have a small crush on him.

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

It wasn't all fun though.  In fact this part is kind of why I think yesterday was an NFD for me, mommy, daddy, G-Pa, and Nana Sandi.  I'm not sure I understood everything that was being talked about, but the doctors were asking mommy & daddy a lot of questions about me and whatever it was, it made mommy & daddy very sad.  I don't remember all of the questions, but they were something about if I am just laying there sleeping, what should the people coming to help me do?  Should they leave me alone?  Should they do everything they can to wake me up?  And by everything, I mean EVERYTHING from pumping my chest up and down and blowing air into my body, to shoving tubes down my throat, injecting needles into my body, and possibly opening up my chest to help me wake up.  But if they have to go that extreme I would most likely only be able to stay awake with the help of some machine.  Seriously people?  Can't you just pinch me or pick me up? N-F-D.

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!

You know what, after thinking about yesterday, I realize I was so busy harping on the few sad moments, that I completely forgot about all of the great moments I had throughout the day.  Am I the only person that 99 good things can happen to in a day and 1 bad thing happens and it makes me forget about the 99 good things?  Why is that?  Is it because the 1 bad thing is really that bad, that it far outweighs the 99 good things?  Or is it because I expect good things to happen each day so I take them for granted and don't cherish them when they do?

Items I Can Scratch Off My Bucket List:

1. Getting grounded
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

Up Next:
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!

http://www.facebook.com/AverysBucketList

https://twitter.com/#!/AveryBucketList

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:

Fight SMA (www.fightsma.org)

Cure SMA (www.curesma.org)

Sophia's Cure (www.sophiascure.org)

Thank you!