Ain't Nothing But a G-Tuuuuube Baaaaabay!

Maybe Snoop Dogg & Dr. Dre can help me spread my message.  But until then...

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.

Wake up daddy, it's Glammer Time!

Before I tell you all about my surgery yesterday, which went as good as could be expected, I want to share a song with you that my mommy & daddy sang to me on my way into the operating room.  It's a song daddy started singing to me the day he met me.  He'd usually start singing it whenever I'd start crying and I would always stop crying within a few seconds after he started singing.  To this day I'm not sure if I'd stop crying because my daddy's singing is just that bad and I knew he'd only stop once I stopped crying, or because the lyrics mean that much to me.  Regardless, it's crazy to think that out of all of the songs my daddy could choose to sing to me since I was born, he chose to sing this to me...

"Wavin' Flag" is actually recorded by K'Naan, but daddy told me he would always sing the Maria Aragon version because he sings more like a 10-yr old girl from America riding in the car with the radio loud and the windows up, than he does a 34-yr old man from Mogadishu (or anywhere else)...whatever that means.

When I listen to the lyrics, I can't help but think daddy unknowingly picked the perfect song to sing to me ever since I was born.  It's a song I'd like played for me whenever my journey here on Earth is over, which will hopefully be many many years from now.  And on that day, as my daddy's song plays for me, I hope people from all walks of life will line the streets and wave their flag for me and all of my friends (past, current, and future) in support of SMA Awareness!

This was my yesterday...

I woke up a happy baby, just like everyday I wake up.  Only today I was feeling a little crankier than normal because I hadn't eaten since 3am, my surgery was scheduled for noon, and the earliest they could feed me through my new G-Tube wouldn't be until sometime around 3pm.  Also, I knew yesterday was the last time I'd ever get my mommy's milk straight from the cow...whatever that means.  All I know is daddy made me say it and for those of you keeping score, I'll let you decide how many points he should lose.

Thankfully my nurses gave me an IV to keep fluids in me so I didn't dehydrate, but even getting an IV in me is difficult due to my low muscle tone (which is a side effect of SMA).  They can't ever find my veins, so they have to use an ultrasound machine just to insert the needle into the right place anytime they want to draw my blood or give me an IV.  And even then, it's not guaranteed my veins will cooperate so sometimes they have to prick me more than once to get what they need.  Daddy says I'd be a walking band-aid if it wasn't for my mommy always throwing down the gauntlet...whatever that means.

About an hour before my surgery, my team of doctors, now known around the hospital as "The McSteam Team", had a meeting with me, mommy, daddy, and Nana Sandi.  In that meeting mommy, daddy, and vital parts of the McSteam Team (Dr. Lotze - my neurologist; Dr. Farber - my pulmonologist; Dr. Minifee - my surgeon, and Dr. Glass - my anesthesiologist) had to decide the best route to go when performing my surgery.  Keep in mind I needed my Glam-Tube because I was having swallowing difficulties which caused feeding problems, weight loss, and potential fluid build up in my lungs (aspirations).  But I also have acid reflux which could lead to aspiration of fluid into my lungs.  So the idea of a second surgery to control the acid reflux was being considered as well.  If elected, this surgery called Nissen Fundoplication, would be performed immediately after the Glam-Tube surgery.  Now I'm only 5-months old, but I think mommy, daddy, and my doctors are discussing whether or not to buy me a new car...just in case, I pretended to be a sleep as to keep it a surprise for when I get out of surgery.

 Here were our options:
Option #1: I have both surgeries

I'd have to be given medicine so I'd be completely asleep.  I would also need breathing assistance from a ventilator, because due to SMA my muscles are so weak, I might not be able to continue breathing properly while in a deep sleep.  If all goes well, I'd wake up, my doctors could remove my ventilator, and I could feed within a few hours without worrying about acid reflux causing aspirations.  Under this scenario it's possible my breathing would never sustain itself again without the ventilator.

Option #2: I only have the G-Tube surgery (laparoscopically)

I'd still have to be given medicine so I'd be completely asleep and again  I would also need breathing assistance from a ventilator.  If all goes well, I'd wake up, my doctors could remove my ventilator, and I could feed within a few hours and they'd put me on medicine for the acid reflux.  It's also possible under this scenario that my breathing would never sustain itself again without the ventilator.

Option #3: I only have the G-Tube surgery (small incision)

I'd be given medicine so I would not feel anything my doctors were doing, but I would not be completely asleep and I would not need a ventilator to make sure I sustain proper breathing technique during or after the surgery.  If all goes well, I'd breathe on my own throughout the procedure as well as afterwards and I could feed within a few hours and they'd put me on medicine for the acid reflux.  It's possible under this scenario my breathing would not have been able to maintain itself properly even though I wasn't necessarily asleep the entire procedure.  In which case, I may have needed temporary or perhaps even permanent assistance from a ventilator.

My daddy summed it up best when my doctors asked which option mommy & daddy would like to go with.  He said, "They all suck."  That reminds me, whenever daddy wakes up I need to tell him he's grounded...that is if he ever wakes up!

A Few Pre-Op Photos:

Me: "Nice purse daddy, could you be

anymore embarrassing?"

Daddy: "It's a satchel.  Indiana Jones carries one."

Thank you Topp's family for my balloons!

Post-Op photos:

First thing daddy dad.

First thing mommy did...ok maaaaaaybe

she kissed me first and then glossed me up.

My ouchie & my Glam-Tube.

Which way to my room ma'am?

Daddy & me reacting to the answer we received

after we asked, "can we go yet?"

We were told we get to leave tonight once my doctors make sure my G-Tube is working properly and I can handle the necessary amount of food going through it.  Personally I can't wait to leave here for sooooooo many reasons, but mainly because daddy promised me if I make it through surgery OK he'd let me drive us all home.  I mean what could be better to waste time while waiting for surgery in a hospital than to get your drivers license?  Yes...my drivers license!  OMG, I can't wait to take all my girlfriends out.  Oh and I'm soooooo picking up Cooper McDreamy for a date in the near future, but don't tell daddy!

Seriously DPS worker?  Let's try this again...

Much better!

Items I Can Scratch Off My Bucket List:

1. Successfully make it through my first surgery

2. Make fun of daddy for sleeping with my stuffed animals

3.  Make a face just like daddy

4.  Keep smiling even after surgery

5. Wear lip gloss

6. Embarrass daddy by posting funny pictures of him online

7. Get my drivers license with an ugly picture

8. Get my drivers license with a great picture

Up Next:

Whatever I bring to life, because I don't have time to sit back and 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!

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!