Wednesday, April 18, 2012

Big Day Tomorrow & Going Viral About SMA?

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.


Because I've had issues with feeding lately and for precautionary measures, my mommy, daddy, and doctors were able to get my Gastric Feeding Tube (G-Tube) surgery scheduled for tomorrow morning instead of "sometime within the next 4 weeks."  I was told the procedure should take 20 minutes to an hour, "it's nothing major, and it shouldn't hurt a bit."  With that said, the person who told me all of that did not appear to have one connected to them so how the hello operator do they know?  Sorry daddy, wrong number, but I'll let you know if they call back.  So while the G-Tube is a good thing for me and this is only a minor procedure, please think of me tomorrow...

Here's what's been going on since Monday:
Sooooooo, I was inside the TV Monday night and again on Tuesday throughout the day.  I also heard my mommy & daddy inside the radio talking about me and now mommy & daddy keep getting calls from someone in New York who says they are Inside an Edition and want to follow me around for a few days.  I don't know what being Inside an Edition means, but mommy and daddy said if it doesn't detract from our spending quality time together and it helps more people become aware about SMA, then I should at least entertain the idea.  Oh and some nice woman I don't know who lives on a hill in Washington is following my story and told me I should add talking to her with all of her friends present to my bucket list.  She had me at present, but then I realized that for someone who is following my story, you'd think she'd know I can't move my legs to walk, much less climb a hill.  So nice woman on the hill, if you meet me at the bottom & help me climb up the hill, I will gladly talk to you and all of your friends.  Can I bring my mommy, daddy, some of my new friends, and memories of my lost friends with me?


Here's just a few people inside of the TV, radio, and computer who are already helping to make others aware of Spinal Muscular Atrophy (SMA):

MSN
FOX 26 Houston - Sally MacDonald
KHOU 11 Houston - Kevin Reece
Houston Chronicle - Francisca Ortega
104 KRBE Houston - Roula & Ryan


Also I think it's important to keep in mind that while I'll do my best to provide any information my doctors give me, I'm ooooooonly 5-months old so you should proooooooobably speak with yooooooour doctor about SMA testing.  Unless of course your doctor likes spelling their name in shaving cream as much as I do, then you should proooobably ask someone else's doctor.


When I was first born my grandpa Tracy in Missouri bought me a camouflage onesie & overalls, so my uncles took me hunting in my backyard.  There wasn't much to hunt, but we did manage to catch a deer and "an extremely long legged pig that looked like one of those really long legged Star Wars robot things," according to daddy.  Whatever that means.


Daddy, wearing the borrowed camo shirt & hat, was born and raised in TX
and this was his first & probably last time hunting too.

No animal pinatas were hurt during our hunt, but I think daddy's going to be if he doesn't get them out of the kitchen reeeeeeeeeally soon.


Items I Can Scratch Off My Bucket List:
1. Be in the TV
2. Be in the Radio

3. Be in the Computer
4. Wear a giant flower on my head

5. Teach someone new about SMA
6. Write my name
7. Play with shaving cream
8. Go hunting with daddy & my uncles
9. Wear pink & camouflage at the same time
10. Just barely begin to go viral with my message about SMA


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.

41 comments:

  1. You are such a precious little girl! I saw your story when someone from 106.1 KISS FM in Dallas shared the link to your blog and I immediately fell in love. I have been following your story and think that you have such an amazing family behind you. I will definitely be sending you something in the mail soon and hope that everyone that sees your story will be able to help with completing your list. My thoughts are with you and your family!

    - Jennifer

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  2. God bless you Avery. Stay strong and my family prayers are with you and your families

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  3. I'll be thinking about you tomorrow, big girl!! Hugs and kisses from California!! xoxoxo

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  4. This is so heart warming and I am praying for you baby girl. You are officially the coolest kid I know!!
    Lots of love,
    Nicole

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  5. Good luck tomorrow my little friend, I know you will do great.

    Big big hug for you and your awesome family.

    - Monica

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  6. Tomorrow morning my sweet Avery your Gpa will be right there with you in spirit as I always am each and everyday and then come Friday I will be right back in your arms!! Be brave my little warrior and I will be talking to your Mommie;Daddy and Nana and YOU in the morning!! Love Gpa

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  7. Prayers for tomorrow's procedure! They do have some pretty neat G-tube/ G-button accessories- a girl must accessorize! And, from my Caleb, who turned 11 months today and has his own, different, medical battle, he highly recommends bubbles, the beach, and should you ever come to Austin, he would love to show you around. As his mom, I give a standing ovation to your parents for raising awareness about SMA! Genius. I hope it furthers research and finds a cure! A huge pat on the back and hug from a fellow parent in the medical trenches. Prayers always!
    www.caringbridge.org/visit/calebsmith

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  8. Hi Avery!! You are such a darling and it hurts me to hear what you are going through.
    I know that you've probably explored as many avenues as you could think of to find something to help your sweet daughter. I was wondering if you've tried essential oils. Frankincense specifically. Frankincense essential oils can actually heal the DNA. It is an amazing oil and the more I learn about it the more I understand why it was one of the gifts to baby Jesus. It is a powerful oil.
    I can't even imagine what you are going through, and I won't pretend to know, but I would think that you'd be willing to try almost anything. I don't know if Frankincense will work or not. I do know that it's worth a shot. If you are interested in trying it, the company that has the purest oils is DoTerra. They are the only company that has Certified Pure Therapeutic Grade oils. They do 7 different tests on every single batch of oil. They are the only company out there that does this. You can learn more about it at: www.mydoterra.com/119697
    I'll be praying for your family,
    Melanie

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  9. Miss Avery,
    Don't worry too much about your g-tube! You now have two friends in Colorado Sam (he's 5 1/2) and Claire (she's 4) and they've had their g-tubes for quite awhile. It was kind of annoying at first, but not having to worry about eating enough, or choking on their food makes life so much more fun! They both think you are very brave, and told me to tell your Mom and Dad to make sure not to tape the pad to your tummy because it itches.

    Claire and Sam are brother and sister. They don't have SMA, but they are quite the mystery and have the Dr's at Children's Hospital here in Colorado scratching their heads. Oh, and Claire wants me to tell you that she likes your flowers. Good luck tomorrow big girl, you're going to feel SO much better when it's done, and your Mom and Dad will feel better too

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  10. I would just like to say that you two have to be the best parents I have ever seen. You are truly putting your own pain to the side to make what little time your little girl has the best. You are admirable, strong, and inspirational people. I am so sorry you all are having to go through this, I can't imagine. My prayers are with you both and with beautiful little Avery.

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  11. You are rocking the giant flower. Good luck today. Prayers being sent up right now.

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  12. We are praying for you today, brave little Avery! We love you. Hugs and kisses from Minnesota!
    xoxox, Ashleigh, Aaron & Avery Cannon

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  13. Avery,

    You are absolutely BEAUTIFUL!! Good luck today (4/19/2012), you are so strong and such a big girl, you will be just fine!! Lots of prayers, thoughts, and good wishes from Upstate NY!

    -Kristie

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  14. Just want to let you know sweet Avery, mom and dad, that someone in Quebec, Canada is thinking of you and try to teach a lot of people about SMA here in my country. Thanks for everything, you learn me so much. My little girl (8 month today) smile each time I opened your blog when she saw your picture. Love from Quebec XXX

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  15. We are thinking of you this morning Miss Avery!!! My little boy Blake had a g-tube when he was your age. He told me to tell you it really doesn't hurt and eating is way more fun when you don't have to swallow!!! My other little boy Brett told me to tell you he loved the pig you caught!!! We are sending you positive thoughts, smiles, and prayers!!!!!

    The Jones Family-
    Cynthia, Casey, Blake and Brett

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  16. I love you Avery and I will be thinking about you all day! I am sure it will all go well and you will be enjoying all sorts of new foods ;)

    God Bless you little one, I can't wait to hear about how it goes!

    Love always, Carolyn

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  17. Hi My sweetest little cousin! Good luck with your new gastric feeding tube, it will help you get stronger :) Maybe you can get Mommy & Daddy to decorate it and pretend it is a belly button ring! I still need to sneak you out for a tattoo & earrings! Then maybe we can take you to Bike Week in Daytona! Lol! I love you sooooooooooooo much darling! I am putting a special package in the mail for you that your big cousins, Haley and Sadie, made for you! We love you and we are so proud of you for being such a strong, little princess! Tell your Gpa to show you Sadie's Jellyfish song and I know it will make you smile! Love you, honey and I am thinking about you all the time! Love, Cousin Melissa
    --
    The utmost, sincerest, warmest, supercalifragilisticexpealidocious regards. Melissa

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  18. Dear Avery, you are such a strong baby girl. You and Your Mommy&Daddy are in my prayers. I too have a little girl with SMA her name is LeeAnna and she is 7 years old. She has type 2. I pray for a cure for you her and all the SMA children in this world. Keep faith in God and have tons of fun, keep writing I love reading your stories.......we love you, your SMA friends Tonya and LeeAnna.

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  19. Good luck with your surgery this morning...my little brother has had a G-Tube since he was 4 weeks old, he is now 16! He has Noonan Syndrome...they are scary at first but once you get used to seeing it and using the g-tube, they can be as simple as having your ear's pierced :)

    Good Luck!

    Kieran

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  20. saying some extra prayers for you all today!

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  21. I am inspired and amazed by you and our cute family! Best wishes!

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  22. Good luck A!! My little Avery is 5 months as well and she wants to meet you! We pray for you every night!

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  23. Love this! I've been praying nightly for beautiful Avery! I hope her surgery went smoothly. I admire the positive attitudes that you all have. She is a VERY lucky baby girl!!

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  24. My cousin has SMA type 2, I love what you're doing for SMA! More people need to know. Avery is in my prayers!

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  25. Avery,

    You have touched my heart with your story and the way you keep going on with your life is amazing!!! I have never heard of your condition until now and I want to say thank you for sharing!!! My husband and I are trying to have a child of our own and I can say now that we will be looking into getting tested!! I will continue to follow your story and looking forward to your next adventure!! My family and I are sending you our love and prayers!! You are such a luck girl to have the loving family you have!

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  26. Hi there,

    I saw this blog yesterday and my family and I immediatly fell in love with you and your family. You have the BEST PARENTS anyone could ask for. I hope your surgery went well today (4/19/12) sweet Avery and we hope you are recuperating well. My 6 year old son and I went to church this morning. We said a prayer and lit a candle for you. I have a 4 month old daughter and he calls her baby sister so when I showed him a picture of you. He said you were his baby sister and that we should go see Jesus to say a prayer for you because I told him you were sick.

    We have been folowing your blog and we have been spreading the word about your illness. You are not alone! We are praying for you and we love you.

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  27. Hey Avery. Me and my three girls just learned about you today and would love to be your friend. They all want to send you something to help you complete your list. Their names are Rebekah who is 6, Tabitha who is 3 and Annie who is 19 months. They want me to tell you to keep that pretty little head up and keep smiling. Oh and keep an eye out for a package from San Diego California from the Monk family.

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  28. Avery,
    Another thing to cross off your bucket list:
    Have the Best Mommy and Daddy that anyone could ever wish for.
    Love and prayers (because I've seen miracles happen).
    Angela

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  29. Hi Avery, ever since we saw you on tv, we have been checking your blog and also praying for you. When I say "we" I mean, myself, and my 2 daughters...Ariel 12 and Bianca 8. We are all Girl Scouts and we have wondering if you had any plans in joining Girl Scouts? Let us know....one out of every 2 american girls joins or has contact with Girls Scouts of US in their life. We would love to send you your very own Girl Scout Vest!!! Let us know....xoxo. Ms. Elena

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    1. Hi Avery!! Hope all went well. Keep us updated!

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  30. Hi Avery,
    Thank you for sharing your story. I heard you on the Roula and Ryan show. Ironically, my family had just been told by doctors that my 8 week old nephew probably has SMA. We are still waiting test results. He already has a feeding tube. We hope he gets to leave the hospital soon and his mom and dad can get to do some of the fun things with him that your parents are doing with you. Hope your surgery goes great.

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  31. Will sure think and pray for you tomorrow. Best of luck, your an incredibly strong girl so I know you will do great. XOXOXO

    Karina, from Michigan

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  32. Hi Avery,
    I have read your blog over and over. I think that you are the sweetest little thing ever. I cried and wondered why? I felt for your parents. As a mom of a 2 year old and a seventh month old, I couldn't help but think of them. I can't even imagine. Yes your parents are great people...I hope that life brings them happiness and peace. But you Avery you deserve it all! I am going to help spread your mission by spreading awareness of SMA. I teach high school freshmen and 130 students now know what SMA is and now know what their options are for testing. They laughed and cried as well as I did. We love you and will pray daily for you. Good things happen to good people! Stay strong and sweet, I will be thinking of you.

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  33. Sweet, beautiful Avery - I found out about you through a May 2011 mommy on the What to Expect message boards. Your mommy and daddy have such a strong and positive message about your story. We can only be so lucky to achieve a fraction of what you've done in such a short time. I am reading from Chicago, so I think you're well on your way to going viral! I'll be thinking about you and sending prayers often!

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  34. Dear Avery, I pray your feeding tube surgery went well. My daughter and I are following your story and spreading the word about SMA. My daughter Rebecca Lynn likes your cousins idea of decorating it like a belly button ring.

    I wonder are you going to prom? You would be a beautiful Prom Queen and I we would surely vote for you.

    God bless you and your Mommy & Daddy. You are all in our prayers.

    Susan

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  35. Dear Avery,

    Only two days ago my husband forwarded me an article about you and I have been thinking of you and reading your blog ever since. Your strength and the strength of your parents touch my heart so deeply and your love of life each and every day is inspiring. I have one child of my own, Jacob, and he has loved looking at your 5 month picture (he might have a little crush) and watching your videos. He is 15 months old. We sang our "tubby time" song as we watched you have so much fun playing in the tub. We will continue to follow your story and commit to praying for you and your incredible parents and family daily. Jacob wants you to know that you have a friend in Baltimore, Md who would love help you scratch off "going to the zoo" or "seeing your first dolphin show" at the aquarium if you are ever in the area! Add them to the list and Jake will be your guide! Praying for you, Sweet girl.

    L, Laura & Jacob Adams

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  36. Hey Miss Avery, I have been reading your blog over the past few days since I found it on cafemom.com. I must say you are an amazing little girl and such a wonderful gift from God. I myself have four little girls, Keirsten who is 9, Amiah is 5, Lilly is your age, and I have a little girl in heaven named Rowan. I also have a couple boys but boys are icky so we won't talk about them :) I hope everything goes great tomorrow for you sweetheart. Also hope things go good for your mommy and daddy also, sometimes all the worry us parents do for our littles is worse than what out littles have to go through. We are praying for you and your family. Try not to flirt too much with your surgeon tomorrow :) I look forward to reading more on your journey little one!
    Your friend, Erica :)

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  37. Hi Avery; My name is Alannah. I am 16months old. and I have SMA. My mommy read me your blog today (well tonight because sleep didn't sound like fun) and I smiled like crazy at your pictures. I may not have a bucket list, but my parents have so much they want me to experience before I get too sick. They as well as you and your parents wish to help me spread the word about SMA, and help find a cure. You are a very beautiful little girl. I had my G-tube surgery at the end of December after spending 2 months in the hospital. You'll do fine. Prayers are with you!

    Hugs!
    Alannah Jay.
    -Lindsey && Zach.

    (Feel free to e-mail me LindseyCalby@gmail.com or check out Alannah's Blog at http://alannahsfightwithsma.blogspot.com/ )

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  38. Hi Avery,

    I just wanted to let you know that I read your blog everytime it's updated and I am always thinking about you! I too was a bobcat (loved your cheer outfit btw... you looked super darling), and lived at the place where your mommy and daddy... met probably the same time they did! You are so beautiful sweet girl! I am passing your story along here in California so hopefully we can reach as many places as possible. You are strong and have the best mommy and daddy!

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  39. Thank you Avery, I love your blog and now know what SMA is .

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