Thursday, April 19, 2012

Dr. Rude & The Glam-Tube

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.

Mommy mommy, wake up wake up wake up.  Waaaaaaake up.  It's time for my G-Tube procedure so get all of our stuff and let's goooooooo!

I told mommy if I was being impatient it's because the SMA is effecting my ability to swallow so I'm not feeding well and I've lost even more weight since my last doctors appointment this past Friday.  Also, one of my doctors told me it's probably best I strictly use the G-Tube once it's in place because I aspirate when I swallow and that could lead to my getting pneumonia.  Daddy told me that means fluid goes into my lungs and if it causes illness, such as pneumonia, it could be fatal.  I think fatal is a bad thing, so getting my G-Tube done today was veeeeeeeeeery important to me and I could tell my mommy & daddy were just as nervous and excited as I was to get this done.

Oh wait, all this excitement about my G-Tube being done today and I almost forgot to tell you about the nightmare I had last night.  It was so scary I had to crawl into bed with mommy & daddy in the middle of the night.

The nightmare started with mommy & daddy being told yesterday that my G-Tube surgery had been moved up to 10:45am today.  So the whole night you could tell everyone was nervous and would probably have trouble sleeping, but nobody ever said anything about it.  When we all woke up the next day, we got ready to head to the hospital.  I told mommy & daddy that the G in G-Tube probably stands for glamorous, so I wanted to make sure to dress appropriately as to not embarrass myself among my fellow Glam-Tubers.

Thank you?  Aunt Adria for the ridiculous outfit when I was born.
The glamorous, glamorous.  Oh the flossy, flossy.
Lie to me nurse.  How bad is it?

In my nightmare, once we arrived at the hospital, we met a new doctor I'd never met before...and hopefully never meet again.  She was R-U-D to my mommy...rude, rude, rude.  Now in her defense, she was every bit as confused as I was as to why mommy & daddy were told my Glam-Tube surgery was scheduled for today, yet in the system we were only scheduled for a consultation and the surgery might not be until next week.  Hey, mistakes happen, but that doesn't mean mommy & daddy can't express their displeasure while trying to make sure I get Glammed out.  But when Dr. Rude said "Look ma'am listen" to my mommy, my daddy had to tell her she was adding fuel to the fire and she may want to choose her words more carefully next time.  I'm not sure what daddy was talking about, because there was no fire and I did not smell gasoline, but he seemed pretty sure there was a fire and the flames were about to get aaaaaaaaa looooooooot bigger if someone didn't hurry up and Glam me out.  At one point daddy looked at me and said, "you may wanna get your mommy out of here, because I think she's about to drop kick a" hold the elevator please.  Thank you.  Wait, where was I at within my story?

Oh yeah, so then I whispered back to daddy and told him reeeeeeeeeeeal softly, "Daddy I don't get it.  If we go to a restaurant and order a steak, only to have the waiter bring out fish, we simply tell them they messed up the order and then they apologize and do what they can to fix it.  They don't look at us crazy and then tell us to come back next week and they'll have our steak ready."  Daddy then told me, "it's because we are considered customers in the restaurant industry and patients in the medical industry.  And while waiters are trained to serve customers, some doctors are born to test patience, I mean patients, and some are born to help them."  To which I reminded daddy that every time we go to a restaurant we always tip the waiter and maybe we should have left a tip for this doctor.  Daddy giggled and said, how's this for a tip...whatever that means.

Then daddy reminded me that I have an amazing medical & patient advocacy team in place, which Dr. Rude will never have the pleasure of being a part of, and I should be thankful for the nice doctors & social workers who are all here to help me.  Speaking of my amazing team, they suggested we go to lunch while they figured out how they could get me back on the surgery schedule ASAP.  So that's exactly what we did.  Daddy had Ranch dressing with some lettuce, mommy had a dry bread sandwhich, and Nana Sandi had some soup & an Avery roll.  Hey wait a second, what's an Avery roll?

After lunch we met with Dr. Karam and her team.  And boy I tell you, compassion must run through the entire GI department because when we first got there, my nurse started asking my daddy questions about me like, "what is your daughters date of birth?", daddy answered 11/11/11.  Then she asked daddy to spell my first & last name and before daddy could say A-V, my nurse started crying, apologized to us because she'd seen me, mommy, and daddy all inside of the TV, and then she ran crying out of the room only to come back a minute later with another nurse who helped her help us.  Mommy & daddy made sure to give her a biiiiiiiiiiiig hug and then they told her they loved her.  Then when we were done she went and got a few of her friends, who got a few of their friends, who got a few more of their friends...

After my GI photo shoot, my Dr. McSteamy told me that he & Dr. Minifee were able to get me on the surgery schedule for tomorrow, well technically today since it's already 1am.  I'd never met Dr. Minifee until tonight, well last night, but he's really nice and seems very intelligent.  He is the surgeon who will be Glammerizing me and I'm pretty sure he went out of his way to meet me last night around 10:45pm as to get my patient/surgeon consult out of the way prior to my surgery tomorrow afternoon.  Not too many doctors would do that so thank you Dr. Minifee and I can't wait to see you again tomorrow.

If there is a downside to how today turned out, it's that I'm still not feeding well so I'm having to stay in the hospital overnight with an IV in me so they can keep me hydrated for my surgery tomorrow.  My less than one hour surgery, just turned into a few days at the hospital surgery.  But it could be worse...I could be in prison...

Lockup: Texas Children's

Trip Advisor gives it ****

Is this really necessary at midnight?  I liked
my room better.
When the nurse said inner tube, I thought she meant we
were all going back to Schlitterbahn.  Not cool!

Items I Can Scratch Off My Bucket List:
1. Wake up without waking up mommy

2. Have a bad dream & sleep with mommy & daddy
3. Dress ridiculously over the top
4. Have a sleepover at the hospital with just mommy & daddy
5. Meet a stranger and make her cry, but also smile all at the same time
6. Have someone tell me in the lobby they loved my story and keep it up
7. Stay up past midnight
8.  Get over 100,000 page views in one day (04/18/12)
9.  Have at least 1,000 followers
10. Have my story told in another language (Wee Wee Baby!)

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 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 (

Cure SMA (

Sophia's Cure (

Thank you!


  1. Sweet Avery- I'm so sorry to hear about your encounter with the RUDE doctor but it sounds like you met some pretty amazing nurses. I'm praying for you that your glam surgery goes well. You are beautiful all glammed out in your tutu AND the cutest little Avery roll I've ever seen. You are a strong and courageous girl and you have amazing parents. I will be passing on your story to as many people as I can. God Bless You little one!

  2. Ms. Avery, your a strong brave girl. I am trying very hard to help you all that I can. Tweeting and Face booking about you. My daughter and I wanted you to know that if u need anything, please let us know. Oh, and if you think about it. You might want to add Ride on a Harley Davidson.. Okay little one, I'm gonna get off here and check on u tomorrow. Tell your mom and dad we said their pretty special people with a lot of people praying and rooting for them. I'm so happy to be able to watch you all do the things on your bucket list. Its a pretty cool idea. Nigh night, and sweet dreams, no more bad dreams... ")

  3. I hope getting glamorous goes well today! Maybe they just had to make sure you had the most comfortable blinged out room in the whole place. I wanted to see if you wanted to come ice skating. I am not sure if they make little tiny ice skates (I sure would love to know because my 6 month old Lola would love to go skating with you too). I thought it might be fun for you and all of your tutu cuteness to come and take a trip around the rink. Maybe we could even get some awesome pictures on the Zamboni and I know that machine makes tons of snow, so perhaps you could have a play in that also. I coach at the Sugar Land Ice Sports Center, and would love to cross of your list ice skating, training for the Olympics, touching snow, and taking super cute pictures! If you want to check to make sure that this is ligitamate, you can contact the figure skating director, Julie at 281.265.7461 or you can have your mom or dad email me at

    I hope today goes really well getting all glammed out, and when you are feeling better, I hope that I get to meet you and check a few things off of your bucket list (and mine, you'd be my youngest student ever!)

    Meg Hagbo

  4. "I told mommy & daddy that the G in G-Tube probably stands for glamorous, so I wanted to make sure to dress appropriately as to not embarrass myself among my fellow Glam-Tubers."

    So sweet! You looked awesome, Avery! Thinking about you today as you become extra-glamorous.

  5. What a beautiful little girl. Your family are in my thoughts and prayers everyday! I thoroughly enjoy your daily stories of Avery's bucket list. It's the first thing I do every morning. I am praying for Avery today while she under goes getting "Glamourous!" What wonderful family and friends you have. Enjoy every second with that angel. Prayers to ya'll from Georgia! I post the link to Avery's site everyday on my facebook and sent it out company wide. We are thinking of ya'll!

  6. Thinking you you today, Ms Avery. You're lucky you didn't get put in jail after breaking the law last week! That TCH prison looks like no fun! I hope your glam session goes smoothly today, and we can't wait to hear about how wonderfully glamorous you have become.

  7. You are a beautiful baby girl, Avery, and you touched my heart! I hope the G-Tube procedure goes nice and smooth and you are back home again. xo

  8. Good luck today, baby girl! Now go get GLAM~A~FIED!!!
    (P.S. I have told everyone I know about you,in person, on Facebook & Twitter & we all agree that you are the most glamorous and might I say, intelligent 5 month old I have ever heard about! :)
    Sending Lots Of Love To You Today,
    The Duran Family

  9. You got the BR-Avery! Will you ask your mom where you got that tutu from because I would like one to match yours! Keep on smilin' and getting strong! Can't wait to give you some love soon!!


  10. Avery! I loved the glamorous outfit!! Maybe I will send Dr. Rude one so she can be not so RUDE! she was probably hating on your awesome style. I hope and wish that all goes well. I will continue spreading the word. You are such an inspiration and are making a huge difference in the world. Tell your mommy and daddy that they are touching lives as well. When I got out of college, my purpose was to make a difference and to do extraordinary things for children as a speech therapist and person. I lost sight of my goal over the years but now I am redetermined!! I have a four year old and almost 3 month old that would love to meet you. We live in Houston so just let us know if you want a girls day with a trip to build a bear or something. We are always ready!! Sending you all hugs!!!

  11. Sweet baby girl I am spreading the word about sma for you in every way I can. Keep strong did you blush when you had your first kiss from a boy xx

  12. Thinking of you little friend. Good luck and hope you never see that ugly rude dr again. It is her lost not to have such a marvelous patient. I can't wait to read how well you did today. Hope it goes fats and you go back home soon. Many hugs for all of you

    - Monica

  13. It's amazing how one little girl can make such an impact on the life of someone she doesn't even know...well Miss Avery, you have for sure done that for me! I've been following you for the last few days now and i can honestly say my life will never be the same. You are such a brave little lady! I'm hoping you get all the glamorizing you need and deserve! Your mommy and daddy seem like awesome people too. You're just a little family of awesomeness (it's totally a word;)) you're strong individuals, but as a family it seems as though you can get through everything! Good luck to little miss glam girl, my thoughts are with you.

    And let me know if Dr Rude needs a talking to...sounds like she needs a time out! :)

    1. 100% this ^

      I think of you every day and am hoping everything with the g-tube works out well for you my dear. :)

  14. Love, Love, LOVE the glam outfit! You are glamarific!

  15. Hi little Avery!

    I am so sorry you had a long day yesterday, but you looked so beautiful so that made up for it. Your parents are such great, great, great, great people and I'm glad they set that doctor straight. Shame on her for not realizing she was in the presence of a GLAMORUS STAR. She should have been rolling out the red carpet instead of being so rude. Your such a precious little princess and I hope that the g-tube starts packing some pounds so you can get your figure back.

  16. Hi Avery,
    I am 18 months old and I just stopped in to say I LOOOVE You! (Mommy is helping me type this) Our family friends, The Puig family,told us about you. Your mommy teaches their boy. :-) Anyways, I think you are the prettiest baby,I even kiss your picture on the laptop. I am sending you a box of lil things I picked out at store. I even told the cashier, For Avey( how I say your name:-)) I hope you like the gift. I see you slept with mommy..what a treat! I love doing that too:-)! I hope we can meet soon,I live Kingwood. If you want to hang out with another Glam girl,let my mommy know! Well,off to mail your box with mommy. We are praying for you and love you in Kingwood. Ana Victoria Smith

  17. Dear Miss Avery,

    I just found your blog today. You are an amazing little girl, and your parents are amazing, too. You know what? I've been a mommy for a pretty long time, and I had never heard of SMA until reading your blog! Isn't that something? I'm going to tell my mommy friends about you, and SMA, too. Keep working on that bucket list!

    Hugs for the three of you from Ohio,

    1. I just felt in my heart I want to help. Please like this page and lets show Avery the LOVE!!/ShowTheLoveToBabyAvery

  18. Hi sweetheart! Our family from Northern California wanted to let you know that we are now following you and you've taught us about SMA. We wanted to tell you what a brave, sweet, beautiful girl you are and that we love you! You have a wonderful mommy and daddy who love you so much and are so proud of you! You're an inspiration to our family! God bless you baby girl!

  19. Hi Avery! I've been with your blog from the beginning, and I'm totally addicted to your story. I think it's AMAZING what your mommy and daddy are doing for you, most mommies and daddies are too busy to blog everyday, but yours are special. Lucky you! :) I wanted you to know that you are doing something much greater than just alerting the world about SMA, you are teaching me something new everyday. I'm a mom of 5 in Missouri,only 4 are living, yes I have an angel in heaven named Nathan. You are teaching me to appreciate everything (good or bad) that my kids do and to live each day as if it were our last. Thank you for that, Avery! Remeber- it's not how long you're here that matters; it's how many hearts you touch along the way! Good luck today and every day, Avery! Hugs and kisses!

  20. Avery,
    I just found your blog, read it, and subscribed. I have to say, you are one go-getter! You totally rocked the Tutu girl! Add dressing up like a princess to your list. And going down a slide, my kiddos loved that when they were your age. You have a beautiful family and I see the love in all of the pictures you shared. I think you are a wonderful inspiration of how to turn lemons into lemonade, ask your Mommy to explain. My girl loves to help her Daddy change the oil, maybe you can add that to your bucket list too. She prefers to do it with her nails done, so maybe after your mani/pedi you can get the oil change. My girl, she likes to be a princess and a tomboy all at once, maybe you will too. I call it well rounded. Thank you for sharing your story, I will definitely be sure my kids get tested when they are thinking about having kids of their own. Thank you for bringing awareness to something that I've never heard of. For such a little girl, you're doing a great big job!! Have a great day, not a NFD!!

  21. Hi miss Avery-

    I have been posting about your blog everyday to Facebook. I've never heard of this condition until your blog.You are an inspiration to the whole world. You need to add have a star named after you in the sky on your bucket list. That way what ever happens in the very far future you will be shining bright for everyone to see. After all what glamorous girl doesn't want to be a star. Prayer and hug are being sent your way, from your friends forever in Texas.

  22. Hi miss Avery-

    I have been posting about your blog everyday to Facebook. I've never heard of this condition until your blog.You are an inspiration to the whole world. You need to add have a star named after you in the sky on your bucket list. That way what ever happens in the very far future you will be shining bright for everyone to see. After all what glamorous girl doesn't want to be a star. Prayer and hug are being sent your way, from your friends forever in Texas.

  23. I applaud your optimistic parents for spreading the word about your condition. Your situation is enough to numb most families, but your parents chose the path less chosen and decided to cherish your life instead of grieving your oncoming death. My 9 year old daughter Lauren died 1.5 years ago due to a rare metabolic disorder (she also had a g-tube). Today I cry and reminisce often, but we also chose to cherish her when she lived. We all have so much to be thankful for. Your parents are very thankful for your place in their lives. God bless your family.

  24. hi sweet baby i found your blog today and am very moved by it i have some close friends who's son was diagnosed with it and his parents are trying to bring awareness to it to we are in the process of trying to see about making a walk here in the tomball tx area in august since thats sma awareness month. they made it in the paper holding a candle light vigil in remembrance of him we were wondering if yall may want to be a part of it??

  25. Sweet Baby Avery,

    You are such a brave little girl. And wise beyond your months:) Last night when i was reading your blog my 3-yr daughter asked why i was so sad. I told her about you and SMA and what a brave little girl you were. She said to tell you that she can fix you right up with the doctor kit Santa brought her. So if you're ever in the Spring, TX area give us a shout and Reagan will patch you right up.

    Hope all went well today and that you're home and chowing down.

    Polly & Reagan

  26. Hello Lil Angel Avery!!!
    I am so glad to read the blog today, I was thinking about you all day yesterday & kept checking back in to see if it had been updated. I love the outfit, you are definitely a very GLAM girl!
    Looking forward to hearng more from you!
    Love The Aiello Family
    Liz, Chris, & Kiernan

  27. Hello sweet Avery,
    I came across your blog and had never hear of SMA until now. Thank you for teaching me. You sure are a cutie. You make me laugh and cry with your stories. I am a new mom and can imagine what your mom and dad must be feeling. I am praying for you to have lots of time with your parents. They sure love you lots!

    Praying from Utah!

  28. Oh sweet Avery, I just love reading your updates! You are such a brave little girl! I did a blog post just about you the other day!!! :-)

    I have a five month old baby girl and we always read your updates together!

  29. Oh no!! How dare that lady be rude, doesn't she know who Avery Lynn is???....I sure do, she's a very strong and amazing baby girl. Best of luck tomorrow getting even more glamorous.

    I love your shirt " best of mom and dad" my baby boy has the same one, ofcourse just blue. Lol


  30. Be sure to check with your doctor about gravity feeding with a G tube instead of using the pump. We had to gastro feed our medical foster daughter for 26 months this way. We were shown how to use the pump which was very slow and noisy. After 2 months we began feeding her using the gravity method out of a 70CC syringe that hooks to the G tube snap on hose. Doc said it is fine, causes no ill effects and just as efficient yet took 3 minutes Vs 45 minutes with the electric pump. Just wanted to share this with you to maximize your quality time. God bless your family.

  31. Sweet little baby Avery, we just read you blog today and plan on sharing it as much as we can. What I found out is that you and I share the same birthday... Isn't that neat . I will tell anyone and everyone about your blog so they will know too. I hope everything goes well in surgery

    Love, izabella and her mom jennifer

  32. Gorgeous Avery,

    You are one brave, beautiful girl. All the best to you. Thoughts, love, and prayers coming from Illinois.

  33. Hi there my little cutey-patooty, Avery! Honey, I am so sorry about mean old Dr. Rude. It sounds like he could take a few pointers from Dr. Patch Adams. Dr. Adams was a famous doctor who loved making his little patients laugh and make being sick a little better through humor. Dr. Rude needs to be turned into the grouch patrol so they can get him and un-grouch him! lol! I hope everything with your glam-tube goes smoothly and that you escape that hospital. Tell your Mommy that her cousin, Melissa, is so proud of her for being such an awesome Mommy and she should get the Mommy of the Year award! Tell you Daddy, that I think he is Super-Dad and can leap over a hospital and all its red tape in a single bound! As for your Gpa and Gma----well, they are supercalifragilisticexpealidocious! At least, that is how Mary Poppins would describe them! Your Grandparents rock! I love all of you so much! Lots of Love, Cousin Melissa

  34. What an amazing little girl! She is absolutely beautiful & very inquisitive! My heart goes out to you Avery & I will tell of your beautiful and happy life. :) You will be in my prayers beautiful girl! Dr. Rude should be put in that prison!

  35. I love following Avery's story, but all of these comments directed at the doctor were extremely distasteful. Everyone has had encounters with rude people, and dedicating an entire blog post to putting that doctor down rather than just dealing with it and moving on does nothing to help to share your daughter's story.

  36. Avery -

    You are beautiful and amazing. I am studying biology in San Diego, and we have been discussing genetic disorders in class. You have made my studies that much more important and relevant. I have been planning to go into oncology research, but a few friends of mine are going into genetic research. I will pass your page to them - I'm sure they will fall in love with you too!

    You are the brightest beacon of light and have inspired me to no end :)

    Your supporter from San Diego,

    P.S. My favorite memory from when I was growing up was visiting my grandparents in Foxboro. We went to a huge apple orchard, picked tons apples and then, after feeding them to the pretty horses on the ranch nearby, made the most beautiful, tasty, aromatic apple pies :) Just a thought for your bucket list!

  37. Hello Princess Avery, I am a new (and instantly devoted and captivated!) follower living in Maine. I saw your story on AOL and it breaks my heart that you have SMA! I did not even know such a thing existed--much less cut short precious lives!! I am praying for you sweet baby girl. We need to find a CURE!! Oh, LUV your outfit by the way--you are a glam chickie for sure! Will definitely pass the word/link here on my facebook page! Love and prayers to you and your family, Lori

  38. What a beautiful child you both have. Avery's story has truly touched me. You two are the best parents she could ever ask for. I will be thinking of all of you and wishing you all the best. Avery deserves to have the best moments in life :)

  39. What a beautiful little girl you both have! You two are the best parents Avery could ever ask for. I will be thinking of all of you and wish Avery the best of luck. Avery deserves to enjoy the best moments in life :)

  40. HI baby Avery. I am so inspired by your story and your amazing life that you are living. You have the best Mommy and Daddy in the world. I have a handsome little son who is 14 months old:) We live right here in Katy, TX. I hope that you have a beautiful week that is full of new adventures and excitement:) I will be spreading your story and praying for you each and every day.
    Hugs and Kisses sweet baby:)

  41. Dear are just a super trooper and I love your glam outfit! You are just blogalicious and Im glad you've gone viral...well, not that kinda viral, you know what I mean. :) Sounds like you have an Awesuum ;) mommy n daddy and as for that Dr. RUDE, shame on her, SHAME on HER, SHAME SHAME SHAME and I hope she has re inlisted in Bedside Manner school-in ANOTHER COUNTRY! Your mommy did the right thing by almost kicking her patooty and I think your daddy should have published her NAME as NONE of us have patience with Doctors like that and there are just too many of them in the world, they need to be CALLED OUT, so not only raise awareness about SMA but call out the Rude-Tudies High n Mighty, Lack Compassion DOCTORS out there! If anymore are mean to you or your mommy or daddy, well, we are taking names! Thank You for making me smile and cry at the same time! Big hug to a little stranger! <3 :) you ROCK! :)

  42. Oh my! How rude of that doctor!!!

    You and your whole family are in mine and families prayers! *hugs* You're beautiful little one!

  43. You are such a beautiful and precious angel wife and I will keep you in our prayers and we hope that you accomplish everything on your list. We will be following your every move.

  44. Eat at a 5-Star restaurant.

  45. Love the GLAM outfit; love the jammies. Avery can rock anything! She is a beautiful little thing.

  46. As someone who works in the medical field, that kind of treatment is never acceptable. Especially in such a delicate situation. My aunt is an ER nurse at Texas Children's Katy and especially because you are working with children and scared parents you must have a certain kind of personality to work there. Firm but helpful. I'm sorry you had to experience Dr. Rude. I'm with mommy though, I would have been "throwing some bows", too! The good thing is your looked adorable!!! I need to take some fashion advice from you :)