Saturday, April 21, 2012

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.



Tickle. Tickle!

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 mommy did...ok maaaaaaybe
she kissed me first and then glossed me up.


First thing daddy did.


Hi mommy!  Hi daddy!

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?"
I'm still smiling!
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!



If there's anything you'd like to mail me, you can send it to:

Avery's Bucket List
PO BOX #2849
Bellaire, TX 77402


Also, my mommy & daddy wanted me to make sure you know that all monetary contributions will be used towards continued SMA awareness and the further advancement of research to find a cure for SMA.  If you feel more 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)


If you donate directly to Fight SMA please let me know so I can keep track of reaching my bucket list goal of raising at least $1,000,000 towards a cure for SMA.

53 comments:

  1. i'm glad your operation went well! keep smiling!

    ReplyDelete
    Replies
    1. My prayers go out to your family. Your brave fight day in day out, to give your baby a chance at life. She had a full life, in a short time. I believe, Avery, is smiling from above with all the angels. God Bless

      Delete
  2. I spot trash magazines in the background of one pic so cross that off too! And what an enviable drivers license pic. Avery, your smile is one of the cutest I've ever seen.

    ReplyDelete
  3. So I take it mommy and daddy went with option 3?

    Also, I'm going to be nice to your daddy and say he should only lose 2 points for that milk comment.

    I'm so happy surgery went well and that you were happy and smiling after!

    ReplyDelete
  4. The writing here is so so, fabulous, and the humor through the pain is so touching. I am happy yesterday's surgery went well. Avery is a little beauty. She needs to be in pictures! A cover girl!! ((hugs)) to all of you. God bless....xo

    ReplyDelete
  5. Avery, I'm so jealous that the DPS worker let you take a second picture! I never get that option! Keep on being strong little girl and bringing joy to all who know you. If your mommy and daddy are ever in The Woodlands, let me know. My Little Buddy would love to take you out for ice cream!

    ReplyDelete
  6. Beautiful Avery, we are so glad your glam tube surgery went well. I'm sure youll feel much better now that you will get the nourishment you need to keep your strength up. I've always wondered if you could get ice cream thru them and if so does it by pass that whole brain freeze thing? Silly I know. We have been praying for you and your mommy & daddy. You are a very blessed baby to have such loving and supportive parents. Oh and congrats on the drivers license! I do hope your mommy and daddy will let you go to prom. Maybe they could take you for a limo ride there! You would be a beautiful prom queen.

    God bless you sweet Avery.

    Love Susan & Rebecca

    ReplyDelete
  7. Avery,
    You were such a brave little trooper! I'm sorry they had to poke you, sweet baby girl. I can't wait for you to take us all for a ride! I hope everything is working like it's supposed to. Get some rest bc you have a lot more life to bring!

    ReplyDelete
  8. So happy to have some news ! I was thinking of you so much ! It's great to see that the operation went good. Wich option did you choose ? #3 maybe ? I know they all suck but you know.... Dont know when your going home, hope it will be soon !!! XXX from Quebec, Canada

    ReplyDelete
  9. Love your pictures. Your driving liecense is amazing glad it all went well

    ReplyDelete
  10. You are an amazing family.

    That's all.

    ReplyDelete
  11. Congrats on all the exciting news Ms. Avery! I'm happy for you guys that everything went well and you're still smiling big! Be sure to spend at least one night out past curfew...(that's what everybody does when they first get their license, but don't tell anybody I told you that!) Leah

    ReplyDelete
  12. I am soooo happy that your surgery went well. You were in my thoughts all day yesterday (I even checked in a few times just to see if you had posted up a quick update). Keep up the smiles baby girl they are beautiful and I can't see enough of them.

    ReplyDelete
  13. I'm so glad to see your beautiful smile after surgery! I'm thinking about you and hope your recovery goes quickly and smoothly. Much love!

    ReplyDelete
  14. So glad to hear everything went well . The drivers license pictures are too cute . Can't wait to hear about your many more adventures. Best of luck miss Avery. Prayers are said every night for you and all your friends with SMA.

    Love from the Smith's in Texas.

    ReplyDelete
  15. Hey Avery,(aka miss munchkin) just as an fyi, Dr. McSteamy also carries a man-bag so don't knock daddy's purse too hard, maybe he's just copying Dr. McSteamy cos he knows you crush on him?

    ReplyDelete
  16. I hope your new car is awesome, Avery! :) Glad to hear your surgery went well; thinking about you constantly over the past few days!

    And minus 1 point for the 'straight from the cow' comment...let's face it, daddies will never catch up in the points game, so no need to penalize them too much :)

    ReplyDelete
  17. Avery you have the most amazing smile. I am in awe of your courage. Love from Utah,

    ReplyDelete
  18. I'm glad everything went well with the surgery! She is an adorable girl and hope that you have many many many many years with her. Hugs from my Family to yours :) keep smiling Avery!

    ReplyDelete
  19. so glad that things went well for you sweet avery! i think of you often throughout the day! and that's an awesome driver's license picture! those are hard to come by, girl! ((hugs))

    ReplyDelete
  20. Congrats Avery on the surgery success! I'm sure the McSteam Team will miss your smiling face but such it is with a super star status! Keep your fans wanting more!! I'd never heard the song your Daddy sings to you before but I like it and will always think of you now when I hear it. You're doing great kiddo!! ♥

    ReplyDelete
  21. Wow Avery, you are such a strong and amazing little girl. Your parents are also so courageous and brave for sharing your story and spreading SMA awareness. A year and 6 months ago I was at my 4 month OB checkup for my 3rd pregnancy have 2 older children already and my doctor mentioned that new screening came out for a few things and said he wanted to test . I said ok sure. Turns out I am a carrier of SMA and waiting for my husband to get his results back were horrible. But with the grace of gd he came back as negative and my 3rd LO was born healthy. But because of this I told my siblings to test for it and my younger sister who just was married a month ago tested positive and so did her husband . Awareness like this saves lives. Ever since then I have been spreading SMA awareness.. Good luck always. I look forward to checking in and seeing how Avery is doing..

    ReplyDelete
  22. I've been reading up more on SMA today and I think you've really helped me to make a decision. I originally went to college to study biochemistry and eventually become a geneticist, but I eventually graduated instead with a bachelor of science in earth and space sciences/biology (think dinosaurs!). I'm currently a stay-at-home mommy for a 9 month old little girl (who gets the biggest smile when she sees your pictures, by the way!), and I've been thinking about what I'd do with myself once she starts attending school. I think I want to go back to college and complete my original goal of becoming a geneticist and contributing to the fight against SMA and other serious genetic conditions. Thank you, Avery!

    I also happened open this website to "glam out" your g-tube: http://www.tummytunnels.com/. I don't know if you've seen those (or something similar), but they look super cute!

    I hope you're doing well! :)

    ReplyDelete
  23. What a beautiful drivers license photo - even your "bad" picture was good! I am so glad your surgery is over and was successful so you can get back home and back to working through your growing bucket list. Add smiles and hugs from me and my family in NYC to your tally! I joined twitter just so I could follow you and look forward to keeping up with your adventures for ages and ages to come!

    ReplyDelete
  24. Everyday I check this site, and everyday I shed tears for the thought of what your family must go thru, I am thankful for the humor that is written in this blog, because it must make things a little easier for your family. I pray for little Avery every day, and I worry when there isnt a new posting daily. I am thankful that the surgery went well. My thoughts and prayers are with you and your family and for a cure for SMA.

    ReplyDelete
  25. Oh, my heart! I have five kids that sometimes I want to choke, but your posts helps keep me grounded. I lost my dad a little over a year ago and there's nothing like have mortality shoved down our throats to help remind us of that saying, "Today is gift, that's why we call it The Present." I'm going to go kiss the crap out of my healthy, willful children now. I just subscribed- best of wishes to all three of your strong hearts. <3

    Julie
    http://theprogressiveparent.blogspot.com/

    ReplyDelete
  26. You all are an amazing family. It's also interesting to note how many people do not know about SMN1 or SMA. I was told at 27wks I am carrier for SMA & had an amnio done to know for sure what my Lil guy's odds would be. Thankfully he has at least copy of SMN1 like me. You beautiful Avery & your family will be in my continued prayers. God is still in the business of miracles & healing when doctor's say they have done all they can. Be Blessed & enjoy your bucket list lady. Luv from Maryland

    ReplyDelete
  27. Precious, Since you no longer will be getting your milk "straight from the cow" I suggest having daddy get you some TruMoo, a frosted glass from the freezer and teach you how chocolate milk only comes from Brown Cows. I taught my kids. Also, glad to see you makin' tweets. Let's get you a very special #(hashtag). I like a lot but only ones coming to mind are #SMAck or #smiles.

    love ya,
    ike

    ReplyDelete
  28. http://community.babycenter.com/post/a32814965/1000_smiles_for_avery

    This is for you babygirl. We are all thinking of you.

    ReplyDelete
  29. More proof that Baby Bobcats are strong! Keep up the good work, Avery! Everyone is praying for you and your family! I love your sweet smile! Soooo cute!

    ReplyDelete
  30. I have been following you & your family since I seen an artical on starcasm about your bucket list. I have done everything I can to get your story out there, and I will continue to do so! You and your family have really touched my heart. I have a 5 month old son, born 6 days before you & I could not imagine going through this. You have such a strong will & an even stronger family & new friends everyday to support you. I pray for you & your family every night. With that being said, I am very happy to hear your surgery went well! You are such a beautiful little girl Avery, your smile brightens my day. I'm so glad to see you stll smiling. God bless you and your family Avery, we love you!

    ReplyDelete
  31. Hi Avery! After seeing your super duper license pics I decided to finally renew being that mine expires tomorrow. Well let's just say that they didnt allow me a retake and it was not very glamorous!! Hope you are having a good day!

    ReplyDelete
  32. You are the cutest baby in the whole world....!!!! Your smile represents courage and hope and I know it will never fade away girl!! And your drivers License is just awesome now I feel jealous that you have 2!! and I have none :( lol! Baby just keep smiling and make your mommy and daddy proud like you are doing just right now!!!!!!!!! <3<3333333333333333333

    ReplyDelete
  33. I love reading about how fiercely you advocate for your daughter. Kudos to you both for being ROCKSTARS!!! :)

    ReplyDelete
  34. Hello ,I'm Heidi and I'm from Malaysia. You are such a cute and beautiful baby . I have shared your story with my friends in hopes of raising awareness of SMA. Your story is a story of bravery and hope, something I have learnt from you. :) I hope you will have more happy days ahead of you and may God bless you and your family .

    Greetings from KL :)

    ReplyDelete
  35. You are one of the cutest babies I've ever seen! (sorry baby cousin Mead!) and one the bravest ones too!

    ReplyDelete
  36. Avery,

    You are a very good writer, I will follow you on your journey,
    You have very very special parents....They love you so much they are sharing you with the world. We will be better people for having shared your journey with you... If you every get to Sacramento California, you can visit me, I have a childcare center, my kids would love to snuggle you! Have a great day sweet babygirl....

    ReplyDelete
  37. Hi little cutie, glad your operation went well.God Bless you and your family!Love from Ren and Ellie xxx

    ReplyDelete
  38. This pediatric homecare nurse thinks you've got a really awesome mommy and daddy, Avery! God bless you Sweet Pea.

    ReplyDelete
  39. What a wonderful family! You inspire us all to be better parents and to take advantage of every day that we have with our precious children. We never know what might befall each of us, so embrace these little ones and every moment that we have been blessed with them!
    So glad the surgery went well and continue enjoying your beautiful life and family for however long you can! Many prayers for you and your family.

    ReplyDelete
  40. Hello beautiful little one,

    Wavin' Flag is one of my favorite songs. I find that every time I listen too it it lifts my sprits up with its beatiful message. You can let your dad know that both K'Naan and Maria are actually both Canadian! K'Naan knows alot about how to be strong when life throws you a curve ball as he was born in a African country called Somalia but it became too dangerous to stay so when he was young they moved here.

    Maria is a good example for you too look up to also as she used the internet just like you to be heard. If mommy and daddy haven't already told you she was a little girl who lives in a city called Winnipeg and she put a video on You Tube of her performing a song by Lady Gaga called Born This Way. Well don't you know it Lady Gaga saw her video and asked her to perform with her at one of her concerts in Toronto AND Ellen also asked to be on her show!

    Keep up the good work making everyone aware of SMA, I check your page everyday to follow your story because you always make me smile and laugh(and cry too). I will be sure to send Ellen your message tommorow and hopefully one day very soon you will get to go and visit her!

    Lots of Love from Amy in Canada

    ReplyDelete
  41. This really touches me! You are such a beautiful girl Avery and you have wonderful parents! Their love for you is overwelming! I am praying for you and your mommy and daddy!! Have fun on all your adventures!!

    Asheville, NC

    ReplyDelete
  42. Really touching .... very special baby :)

    ReplyDelete
  43. Thank you is all I can muster here.
    Thank you!

    ReplyDelete
  44. My Prayers are with your parents tonight Avery as I know you are in Heaven being held and loved as your Mommy and Daddy did for you on Earth. I pray for strength for them and that your beautiful smile lives inside them so a piece of you is always with them. The life you lived here on earth is filled with more accomplishments then some that live to be ninety. I promise to spread the word of SMA and to continue to contribute to find a cure. At some point everyone meets in heaven again. Your Mommy and Daddy will then have another chance to hold you but till then you have so many loved ones up there. Sending much love to a beautiful baby girl who has touched so many lives. - New York

    ReplyDelete
  45. Can't help but fall in love with this beautiful couple. And then there's Avery. The most beautiful, inspiring little girl I'd ever laid eyes on. Rest peacefully in the arms of the Lord sweet girl. You and your story will live forever. One for the Bucket List: BECOME A BIG SISTER. Being one myself, there's nothing like it. Having complete control over ALL of the toys and getting to be their "role model"...I know you can't be there in person but you have an amazing mommy and daddy and a story and TONS of pics from a big sister that can teach anyone about the meaning of life. Love you guys!!!

    ReplyDelete
  46. I feel blessed to find this bucket list and to see the impact of a sweet life on a family and the world. Your parents have proven to be innovative and amazing at finding an outlet to cope. I hope that they continue to rely on their strengths through this next and very difficult part of their journey. Thank you for inspiring Avery and family.

    ReplyDelete
  47. My heart goes out to Mommy and Daddy for such an inspiration to all. Your daughter is an amazing little girl...a little star lit up in the sky so bright because her smile brighten up everyone's heart just by looking at her.

    Rest in peace little angel! Watch over your parent just like they watched over you on this earth.

    You are in my prayers
    New Brunswick, Canada

    ReplyDelete
  48. My heart both aches and sores at this moment! I am filled with a sense of love and fight for the time beautiful little Avery spent here on earth. I had not heard of SMA before today, but because of little Avery I will make sure everyone I know is made aware of it...aware of her, and her loving parents! Avery's time here may have been way too short, but her love will live on forever, and so will her story, and her fight for a cure for SMA! I sincerely hope that her family finds love and peace in her memory and knowing that they were truly blessed to have had the time that they did with her! She is a MIRACLE for SMA people everywhere! <3<3

    ReplyDelete
  49. I am so truly sorry for your loss. May God watch over you and keep you close. Your baby is an ANGEL in heaven now. You will meet again in God's time! You are such STRONG and LOVING people. The world is so lucky to have you as examples of what a family means - unconditional LOVE!

    ReplyDelete
  50. i loved reading what your journey has been all about, you are such a angel and you will be granted wings to fly and be with god. your mom and dad will be yours to look after when you are granted your wings and you will be able to take care of them like they have of you. love your story

    ReplyDelete
  51. as i read i became more and more aware of the presents of an angel. your blog is beautiful in so many ways. when you are with god and are granted your wings, you will be able to watch over your mom and dad and help them through the tough days ahead. so go and spread your wings and fly

    ReplyDelete
  52. Hello My name is Tina my best friend of 26 years sent this blog to me and when I read it I felt I should write something. I'm so saddened from your loss, I have a great understanding of what it's like because I too have Muscular Dystrophy Spinal Muscular Atrophy type 2. The difference is that I am 32 years old, but I do know almost to well about the bucket list I found I grew up fast because I wanted to try and experience as much as I possibly could. I was told a lot of the same things about not walking and breathing would be an issue and lung infections would be an on going problem and that I would not live to be 2 years old.All types of M.D are very terrifying diseases, the progression of the deterioration can be slow or very rapid.I send you strength and love again I'm so sorry for your loss and at the same time I am gladden for peoples gain learning about SMA. Best wishes to your family and god bless.

    Toronto Ontario Canada

    ReplyDelete