Where do I even begin (part 2 - Monday/Tuesday)

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!

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!