Friday, September 24, 2010

September 24: Day +84



Hands in Hands... Bella getting to hold mommy and daddy's hands...

Heaveno!

You know what over 240 comments in the past two days causes?

A miracle.

I walked into rounds this morning, and the resident explained that not only did Bella's blood pressure continue to be AMAZING after we left last night, but that is was SO good, that they - get this - weaned her phenylephrine overnight by 20%! She tolerated her precedex wean over night, and was doing phenomenally well.

Just then, Dr. Doom himself actually SCOFFED OUT LOUD and said, "[scoff] surprisingly well." Seriously!

Hey, every great story needs an antagonist, and if his role in this cosmic game is to continue to act like a j#$^*#ss, then so be it. In fact, THANK YOU, Dr. Doom, for playing the role of antagonist. Thanks to you, you have GALVANIZED the world's intentions that Bella be well not only to witness a miracle, but to spite you! I'm serious. I am grateful for the fire that has erupted in me and you, due to his dim prognosis yesterday. Sometimes in life we marshal ourselves into action for the noblest of reasons, and sometimes it's just to prove someone else wrong! Whatever the reason, if it works, that's what counts! Maybe he pissed off Bella talking about her negatively in the third person while standing over her bed. If that is the case, I am sincerely grateful for him.

To be fair, here is the other reason I am grateful for Dr. Doom. (I just can't stop calling him that - it just has such a funny ring to it...) This is the REST of the story I wanted to tell you yesterday but couldn't because my computer battery died before I got the chance...

Hopefully all of you realize I published a book in March about Bella's first 3 months of life called Bella's Blessings: a Humble Story of Providence. After realizing on Bella's third day of life that her hospital was located on Providence Street, I began to consider that Bella was here on a mission, and that God was guiding her journey, and providing support for us in ways we couldn't predict. Once I began to look for God's blessings and signs of providence, they started popping up all over the place. So many, in fact, that I had to write a book about the experience.

Anyhow, the rest of the story is another chapter of providence for you. It goes like this:

When Dr. Wagner and the attending BMT doc returned to our room yesterday afternoon, Dr. Wagner recounted the following story. I will try to quote him directly, but some paraphrasing will no doubt occur, so here goes:

"I was talking with Dr. Doom about Bella's case last night before turning over my patients to him, and when I explained to him that Bella was dealing with a capillary leak issue, he mentioned that he had just read an article in the Journal Blood about this very problem. In the case study, a BMT patient with a very similar history and problem set as Bella was given the drug bevacizumab and it turned their hypotension around almost instantly, like within a few minutes or hours. What makes it such a coincidence is that if any other doctor had been coming on, we wouldn't have had this same conversation, since it was Dr. Doom here who read the article in the journal..."

Where some see coincidence, I see providence.

Didn't Morpheus say that in The Matrix: Reloaded? :)

I smiled and let him have his coincidence. I don't believe in coincidences. Regardless of what the truth about them might be, I prefer to see them as providence. It lights me up way more to think that there is a loving God out there overseeing all of the universe, who from time to time lays out clues, tips, hints, and little morsels of support along the way in each of our respective games of life we are all playing. Now, THAT sounds like fun! I like to think of life like a game, and it makes the game fun for me to think of it in such a way. I look for clues and hints, and because I have faith they are there waiting for me, I always find them. The catch is that sometimes they don't LOOK like opportunities for growth or support or the helpful hints I think I want or need. Sometimes, they disguise themselves as problems, struggles, even tragedies to make it much more challenging for me. I find that the better I get at the game, the bigger the obstacles that show up. Like any game, the better you get, you increase your difficulty level to challenge yourself. So, you can see inside of this paradigm, I am humbled that God thinks I can hang at this level by assigning me the role of Bella's daddy. What a game, indeed! Let's just say that I'm having to dig pretty deep on this level and I've definitely broken a sweat! :)

So, throughout the day today, I read YOUR comments from yesterday and today to Bella while holding her hand. It was magical. To be reading them to Bella at the same time as reading them to myself was such a treat. The way you all shared yourselves over these past two days... Something has shifted drastically in the way you share. You now tell us about YOU... Your struggles, your triumphs, your passions, your pain. As a result, we feel an intimacy with you that we cannot believe is possible through this medium, yet is. As people came in the room today, they were blown away by the stories you shared with us. They were all so inspiring; I know that I could feel the energy from your written words come alive in me as I breathed them into the room. I could feel the energy surge down through my arm and out through my hand, pulsing as it transmitted your love and energy into Bella's hand and arm. It was extraordinary.

YOU TOUCHED BELLA TODAY. Physically. Powerfully.

So much so that her blood pressure has looked STELLAR ALL DAY today... EVEN WHEN SHE WAS NAPPING!


Those top 4 waves are what we are following... pay no attention to the red box at the bottom.

We are all walking inside this miracle together, right here, right now. We are making it happen with Bella, together. We are in the middle of a world-wide communion of faith, love, passion, belief, compassion, generosity, support, and family. We are one family united for Bella.

We are Team Bella!

Thank you for being a part of this team. Yesterday and today happened the way they happened because of all of us, even Dr. Doom. See, I told you I am grateful even for him! All of this happened exactly the way it did because YOU showed up. If you hadn't, the experience would not have been the same. In some way, even at the quantum level, it would have been different. But it isn't. THIS IS IT.

The added blessing of the day was when Angelique walked through Bella's door at around 9:30 this morning! My phone was turned off charging, so I didn't know she was coming. She told her boss that she needed to be by Bella's side today, and her boss was AWESOME enough to let her take the day off and covered everything for her! We are so grateful for her employer, Verizon Wireless, we can't even tell you! It was sooooo nice seeing that beautiful woman stride through Bella's door! I instantly felt ten times as strong. Angelique and I have always held on to the premise that together, there is NOTHING we can't do. I instantly felt that power from her presence and knew it would be a good day, a special day, and it was.


So, the wall of cards is going to be constructed! I assembled some of the pieces today and have a team of friends here working on it over the weekend. I can't WAIT to have YOUR words of love and support SINGING OUT from every inch of wall space in Bella's room! You wrote that Bella is with you throughout every day. Well, now you will be with Bella all day, every day! Collectively, we are healing Bella. YOU are co-authors of this story now. There's no turning back now!


This is one of my childhood friends Bonnie, and her Hubby Brett and son Sidney. Brett drew this picture on their kitchen wall the day Bella got her Trach. She asked that I post this on Bella's wall in addition to the comments. Do you have a picture or card YOU want to send? Send it to timringgold@gmail.com or snail mail to 621 Oak St. SE Minneapolis, MN 55414.

Tomorrow, we'll continue the sedative wean as we did twice today. Every 12 hours we wean one of her sedatives by 10%. Bella is tolerating this very well right now. I'll be in morning rounds, no matter what time they are, then it's leg dressings, trach cleaning, and ulcer care. Ali and mommy are attending a "pet parade" in the lobby in the morning, then we're all going on the Mississippi Queen Riverboat for a 90 minute ride up the river! Ali has seen the fake one at Disneyland numerous times, now it's time for the real thing! Then, Ali has a play date with Collin again while Angelique stays to support Bella. We want to have more mommy and daddy coverage THIS weekend to keep her spirits up as she turns this important corner.


It's Bella's neck! I know! I haven't seen it much lately, either!

Thanks again, but don't stop now! What do YOU want to say to Bella that you may not have said yet? I PROMISE I'll be reading her comments to her every single day from now on.

Someone make me a sweatshirt that says, "Bella's Mouthpiece" on it. I'm a size Medium ;) That'll drive the docs NUTS! Angelique just said that she would LOVE it if I showed up every day in a sweatshirt that said "Bella's Mouthpiece" on it! Seriously. If you want in on the fun, 1st one to comment "I'LL DO IT!" with their email address wins. Okay, that's enough shenanigans for the night. I need sleep!

God night.

94 comments:

  1. Dear Bella,

    I have been checking on you every day from down here in Louisiana. It's pretty amazing how many people are rallying and praying for you to get better! We love hearing your daddy write to tell us about you, your mommy, and your sister. He is a funny guy who loves you SO MUCH. When you're bigger, you'll look back on this blog and I bet you'll just run and give him the biggest hug ever.
    I pray that you get better fast, show those doctors Who's the Ultimate Physician (Jesus), and that your family continues to be at peace.

    Stay Strong Bella Boo!

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  2. You KNOW I'll do it.
    Yay team Bella!

    Dear Bella...did you know there are about 11 people walking for you in October? Did you know we have raised over $1,000? Someone I don't even know sponsored me! That's cool! I have 2 of my wonderful friends walking, my super sister, your grandma and grandpa...and many of your friends who I will meet for the first time. I'm going to hug them all so tightly, hug them for your mom and dad...and Ali and you.
    Thank you, Sweet girl, for connecting us. For showing us about Happy endings.
    Did your daddy tell you about the pirate boats? I'm going back to take pictures one day!

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  3. Dear Bella:

    You are a wonderful, amazing spirit. I don't even live in the same state as you do, but you have touched me in a way few people I know have. What power and grace you have in you! May that power and grace keep growing and helping you recover!

    To Bella's family - I teach medical students and every time I hear of a physician who is so lacking in one of the most basic skills required of a physician, I cringe. I am so glad that you have found the positive in Dr. Doom's demeanor - more power to you (and yes, you are Bella's mouthpiece...). I am praying for you all now.

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  4. go bella go bella go!!!

    we love you and we're rooting for you all!!!

    love, kristen and james

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  5. Tim, Ang, Ali, and Bella. We love you.
    S, D, W, and M.

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  6. Hi Bella, I am glad that you're feeling better ! I am sharing your story all over, facebook, twitter, so everyone knows and can send you hugs. Oh and for your daddy Tim, what about if you post a question of the day for the readers with each of your posts :) Dunno, just an idea ..
    Love, Molly, Bern and Sydney in Vancouver, BC

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  7. How about "Bella's Loudass"? I know of a shirt that you already have that needs only slight modification.

    Bella, You have touched so many hearts with your bravery and strength, and you are only 16 months old. Imagine all the people you will inspire when you are 16 years old. Or when you are 36!
    You will be healed, soon. We all know it and I think you do too, that's why not one person who matters has given up on you. Stay strong and heal at your pace. We love you!

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  8. Dear Bella, I am one of your prayer warriors from Alabama. I have 5 children and I am about to have my first Granddaughter. Years ago I earned a black belt in TaeKwonDo. I know it is funny to think of a Grandmother in martial arts, but hang in there with me. I hit a block in my training and was stuck. I had to break a board. A very wise man told me to invision the board broken then I could accomplish it. I did....many times! So tonight as I prayed for you I looked at all of your pictures, smiling, playing and I invisioned you in the future doing those things! I will pray for your doctor tonight. I will see him in the future with your story written in his heart as he helps other children, "There is this little girl named Bella who was very sick and then we kept trying to find the answers and now she is well. And I learned a lesson from her....." Dream big Bella!

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  9. On the NICU unit that I work on as a nurse - we have our own "Dr Gloom". While she is a brilliant doctor, she spends most of the time annoying the hell out of the rest of the staff, and the parents she deals with. But the ones who know her well, know that her "intensity" comes from a good place. She wants nothing more than to see each baby that she takes care of get to go home healthy and happy. Sometimes that means she sits with us (for better or worse) at a sick baby's bedside all night. That also means that even when she's doing her best "Dr Gloom" impression, she'll always stick a pacifier / help comfort any crying baby that she walks by. Always. She'll even change their diaper at their first birthday party!
    Never underestimate Dr Gloom...!

    (I think Bella could use her very own "Dr Gloom" to cuddle with... a "beary" special package is on its way!!!)

    With Love,
    Jessica
    Chicago, IL

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  10. Nearly every day my daughter askes about you Bella, she asks me about the girl with the fun socks who is in the hospital. I recap what is going on in kid-eze, which is difficult to do but well worth my time. I think most importantly you help us take a few minutes each day to think outside ourselves and to seek our own reassurances about the meaning of life. Today, we pondered the meaning of your life and what you have to teach us. Mikaela told me that she thinks you taught her today to be patient with her friends and those who she has an opportunity to become friends with even though they don't think or behave the way she does. Thank you!

    You are in our thoughts little girl with the fun socks.

    Piper and Mikaela

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  11. bella, glad to hear all of your good news! you are lucky to have such great "players" on team bella!

    prayers are being lifted up for the fabulous bella right now!!!

    go team bella :)

    god bless y'all
    susan
    w-s, nc

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  12. Bella and family,
    I come to check on you every night before I go to bed. You and your family are always in my thoughts and prayers as well as the other families going through BMT for E.B. My daughter Kaysie was born with E.B. 14 years ago and since she has a very rare form called Dowling Meara, she outgrew most of her struggles with E.B. at about age 6. She got to say, "I was born with this terrible skin disorder and as I got older it went away." We are so very grateful. I want you to be able to say that too. I am a big Team Bella fan, you can do it Bella with the Lords help. Keep those good days coming Bella and believe that miracles can and do happen everyday.
    Love,
    Christy (mom to Kaysie, Cody, Issy and Kayden in Utah)

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  13. Hey to all the Ringgolds!

    My name is Ellyn. I've been following Bella for a while now but rarely have a chance to comment. I have five kids. My son, Eli, died during labor, and of the four I have here on earth, three were NICU babies.

    You might think because Eli died before he took a breath that his life was useless. On the contrary. Eli fulfilled a purpose larger than that which most os us fulfill in our entire lifetimes. Because of his short life, his story, people have come to Christ. That's the best thing we can ever hope to do, and he did it. It's not what I would have chosen...I want him here, with me, but knowing what he did for others has been a great consolation.

    I have a blog, too. When another one of my sons, Seth, lost his hearing thanks to an antibiotic he was on in the NICU, I didn't know what we'd do. But just as people have rallied around Bella, the online community along with our local community rallied around Seth and held garage sales, sold bracelets, spread the word...and before we knew it we'd raised all the money we needed for him to receive cochlear implants at eight months of age. Most babies have to wait until they're over a year old for the surgery, so being able to give Seth the gift of hearing so young was a huge miracle.

    This online family is something you'll be thanking God for long after Bella is recovered and at home, happy and healthy. The people that we meet through these blogs...the ways God facilitates our coming together, is nothing short of remarkable, and some of my family's very best friends are those I first met online.

    My son doesn't seem to follow many rules either...it's Seth's way or no way, all the time, and we've learned to follow his lead and let him show us how to teach him. Today he is a bright, happy two year old boy who hears and speaks normally. It seemed insurmountable, but it happened. And I know it will happen for Bella, too. These kids, the ones who don't fit the mold, who always take the least travelled path...well, they're the ones that I think Jeremiah 29:11 applies to especially well.

    God has a plan, and he knows what it is, and it's the right plan for Bella. I can't wait to see it all made clear.

    Hang in there, guys. We're praying for you in Florida.

    Ellyn
    www.profoundlyseth.com

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  14. What an amazing turn around! Go Bella!! I am thinking of you as I go to bed tonight (and every other night) here in southern AZ. I know tomorrow will bring more good news!

    Cara in Tucson, AZ

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  15. Been praying hard down south of you in Apple Valley MN. Did they start this drug yet??? I want to see Bella up and smiling again. She is a big fighter. Keep up the good work.

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  16. Karen, in Arizona,

    Hey bella! AWESOME job. Keep it up sweety, I was so so happy to hear how well you did today. You are so very pretty and precious, I guess when I was talking I didn't mention how I landed here. I came here from daylon, and landed at daylon through a comment on another blog, I forget which but I went to daylons blog and thus yours. I feel so connected to you sweety, when I was little I was diagnosed with type 1 diabetes, but by the time they discovered I had it I was in a coma. My parents where told my brain had swollen and I would not survive and my mother replied to the doctor that he obviously had never met her daughter. I see two million times my strength in you sweety, you are amazing. God will see you through this, he will. He knows you better than anyone could ever know you, and he knows you can beat this! Hope you sleep well, and be good for your mom and dad tomorrow!

    Always in my prayers.

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  17. Sweet Bella,
    I first heard your story from one of your family members... I was her therapist at the Colorado hospital where I work. She had your daddy's book about you, "Bella's Blessings," laying on her bedside table. As she talked about you and your story, I found myself tearing up, wondering how on earth your family had such strength and faith. Since then you and your family have touched me in so many ways. I truly have been blessed by you and your family, Bella. You are definitely here for a purpose... we are all strengthened by you and your fire, your parents' faith and fierce love for you, Ali's spunk and protectiveness, and the biggest blessing of all- that you have opened the eyes of thousands of people to the little blessings among us each day. "If God leads us to it, he will lead us through it."
    Jen
    Durango, CO

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  18. Speechless - although, like I told Ang in a message earlier on FB, I was thinking about her and you and Bella all day today, like really locating myself over there in your shoes..... I took the day off today as well, funny, Ang you did too...and I drove to Cottonwood with Harmony and my mom for some fresh air...around 11am we were having a late breakfast at Brandy's Kitchen and while we were waiting for our food, I saw a huge Tiger Swallowtail butterfly gracefully fly by outside the window.
    That was my clue that something extraordinary was taking place over there with you guys.
    For Bella: thank you for your courage to be here and thank you for raising the level of vibration!
    Wendy, Jerry and Harmony Burkhard

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  19. I like what Swampgirl said: "I will see him in the future with your story written in his heart as he helps other children, 'There is this little girl named Bella who was very sick and then we kept trying to find the answers and now she is well. And I learned a lesson from her.....' Dream big Bella!"

    Here, here!

    Also, I LOVE that picture of Ali!

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  20. Hi Pretty Girl!
    Praise God for a beautiful day! I thank the Lord for watching over you and helping your BP turn the corner- whew hew! You make my heart skip a beat and take my breath away, by your strength and spunk! I pray every day for the blood of Jesus to protect you...why?...because, no evil can harm when the blood of Jesus is asked upon a soul! I am soooo super excited for Oct 17th...CHOC WALK...Team BELLA!!! So far I have several friends interested in walking, my mom is flying in from North Carolina to walk, and my Dad's company will be donating! Yay! I can't wait to meet all the 'walkers'....it will be overwhelming & amazing to meet other prayer warriors that are walking for you too! We are praying for you baby girl! May God Bless you, Daddy, Mommy and sweet Ali.
    love you to the moon and back,
    nicole

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  21. I have not had a chance to let you know you and Bella have made it to our blog twice this week!

    An EB Prayer List - http://thesuitelifeoflucyandethel.com/?p=2385

    Special Dads' Blogs - http://thesuitelifeoflucyandethel.com/?p=2403

    We'll continue sending big hugs and prayers for all from North Carolina, as we consider the EB family an extension of our SMA family :)

    'Lucy'

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  22. Jack and Molly's NanaSeptember 24, 2010 at 11:31 PM

    There is strength in numbers. There is also strength in the single voice praying for the health of a child. I'm so happy to be one of the team that finally got a direct line to God's ear. Yesterday's blog was difficult to read; today's made me smile from beginning to end. And trust me, as soon as I finish one more project, you can consider your sweatshirt a done deal. Can't wait to see tomorrow's post! Go, Bella!

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  23. We love you, Bella!!!! Keep fighting that good fight! This is just the dark, love. Soon it will be morning!

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  24. Hello Beautiful Bella!

    I am so proud of you baby girl. Don't ever give up! You keep fighting and show that Dr. Doom whose boss. You are such a special spirit. You inspire me everyday. Because of you I hold my babies longer, kiss my babies more, and cherish EVERY moment I have with them. I am such a lucky mommy to have been blessed with 2 healthy babies and because of you and your inspiring life, I have learned to recognize Gods gifts in my life. I even pray more because of you. Everytime I think of you during the day I take a moment to say a little prayer. Stay strong precious. I know you will win this war!

    Lots of LOVE,
    Amber, Craig, Malorie(2 1/2), and Liam(9 mos)
    The McLaughlin Family,CA

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  25. Love to you all!

    Elena

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  26. Keep Fighting BELLA!!!! You have lots of people praying for you and your wonderful family! You need to get well so you can go and play with your sister! I can't go to sleep at night without checking on you and your family first. Then I say my nightly prayers and ask God to wrap his hands around your little body and all of the other EB kids too to keep you all safe and warm throughout the night. Becky in Texas

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  27. I'm glad to be part of Team Bella. Tim, you are a great coach!
    Love the pictures. I hope you have a calm weekend to recover from this week.
    Always praying for all of you.
    Mariana

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  28. I am SO glad that Bella is stronger and is fighting this now. I have been reading your blog for a few weeks now - found it through Jonah's awesome blog.

    Linda
    South Africa

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  29. Hi, Bella! As usual, I check on you every morning when I wake up. I am so glad you had a better day yesterday. I trusted that you would with so many of us praying for you.

    I want to tell you the story of another miracle girl so you'll know not to listen to those crazy doctors, but to trust the Great Physician. When I was pregnant with my little girl, I had A LOT of bleeding in my 4th month of pregnancy. The doctor said she is o.k. for now, but he had never seen a baby do ok after that much bleeding. He told me to prepare to lose her. I thought that was ridiculous as I was preparing her nursery to have her join our family. What did he know! God gave me assurance she would be fine.

    When I was 6 months pregnant, my water broke. My Dr. Gloom told my husband she wouldn't make it. Well, God and I were up to something different. She wasn't born for another 5 weeks. When she was born, I knew all would be well--many conversations with God over that 5 weeks on bedrest. Again, another highly educated doctor comes in within hours of her birth and says she is not responding to any medications to help her lungs. I'm thinking, well that just means she is only going to respond to prayers. Imagine their surprise as she gets stronger and stronger.

    My little girl is amazing and is doing so well in school. Although she was diagnosed with epilepsy a couple of years ago, anyone around her remarks about her spirit and love for life. A friend once told us he looks at her and sees "life" in her eyes. She spreads joy to all around her.

    That's a long story to let you know how much joy and "life" you can spread to others. I can't wait to hear your stories!

    God bless you and your family!

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  30. Dearest Bella,
    I couldn't sleep so I got up and checked on you first. I'm so happy you are doing better. You WILL get better sweetie. You have so many people who love you. Every night I lay in bed and pray and last night for some reason, I don't think it matters, but I felt the need to get on my knees and pray. It made me feel like my prayers would be more powerful for you.
    Mom & Dad - keep holding that precious little hand, kissing that beautiful face and talking to her. KD in Minnesota

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  31. Wow...I'm sitting here with cold chills as I read your post this morning. I, too, dislike the word "coincidence". I prefer the term "Godincidence". I'm sure you've got some good doctors, but HE is the Great Physician.

    I love that you are feeling the positive energy coming from so many people who are rooting for Bella. I'd tell those doctors they are not allowed to speak negatively while in her room. It is apparent that her little mind is hearing and absorbing what is being said.

    Now...for a suggestion. I think that after Bella is healed and is well, you should consider taking her around the country. She is, you know, becoming somewhat like a rock star. All these people clamoring to find out about her... and caring about everything that happens to her...and wanting to see what fabulous socks she's wearing. We'll call it the MIRACLE TOUR. How's that? And then we would all have a chance to meet our brave little fighter!! Suh-weet! So keep fighting, Miss Bella. You have adoring fans waiting on you!

    And lastly...YAY for the animal parade today! I told you yesterday about my work with animal rescue and the important role I think animals play in our lives. So I can't wait to hear all about the fun.

    More importantly, however, I can't wait to read about another good day for Bella. Hope you all have a wonderful weekend.

    With affection - and praying for healing,

    Susan
    A friend in NC

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  32. YAY! This was just the thing I need this morning as one of my sweet triplets was up most of the night and up for the day at 5am. (((yawn))) Feeling exhausted and frustrated with my sweet son, I now feel recharged. We looked at the butterfly picture together as Gabe announced proudly over and over "bu'er fi" That would be butterfly to you and I. Thank you Bella!!!! Talk to you tomorrow. ;0)

    Mary & Gabe (everyone else is sleeping but send hugs your way =oP )
    Omaha, NE

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  33. Dear Bella!
    This is my first time commenting on your blog! Your daddy a wonderful recounting the events of the day. You a very lucky girl to have a mommy and daddy like that. Keep getting strong little one. We are all pulling for you. I wake every morning and read your story. We are praying for a miracle.

    Angela

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  34. You show them Bella!! I spend all day thinking about you and I had this feeling deep down that good things were in store today. Tim, you are an inspiration for all parents in such a situation and you and Angelique are the best advocates this little girl could ask for!

    I know you use the butterfly metaphor for Bella, but have you ever heard of the bumble bee metaphor? Apparently, a bee should NOT be able to fly based on its aerodynamics and such, but it does fly! Why? Because either no one told those bees they cannot fly or if they know they are just out to prove the world wrong! So beautiful Bella, as your beautiful butterfly skin gets stronger and stronger you act like a bumble bee and show all those doctors no one can tell you what you can and cannot do!!

    Love from Boston
    Tamar

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  35. Dear Bella and family,
    Prayers as always!
    Bella- I can't get you out of my mind, little girl. Keep up the fight.

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  36. Bella, I think of you and all the other EB kids first thing every morning and the last thing every night. I pray for strength for you family and wisdom and knowledge for your doctors. Your Mom and Dad ( and sister) are awesome. They are fighting for you and I know you are fighting too.

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  37. Go Bella go!! Continue to fight and be strong. Sending love and prayers everyday from Texas - I BELIEVE you will be well.

    Stephanie

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  38. Hi Bella: It's me, Leah's Nana, a member of team Bella. You are so special to me little girl. I look at you and just know that you are the answer to my prayer. After losing Leah last year to JEB, I prayed for a cure for this awful disease. All the awful stuff that you have been through, you are still here fighting. You are awesome. Show these doctors who really is in charge.
    God is with you sweet baby girl, every second of everyday. God is holding you in his healing hands and loves you as much as your Mommy, Daddy and beautiful sister.
    So many people are praying for you to beat this EB and I know that you will.
    You are in my heart and I can't wait until the day I can meet you and your family and give you all a great big hug.
    I am sure that Leah is your guardian angel. Leah will stay with you forever.
    Love, peace and lots and lots of hugs. Love you guys. Love Leah's Nana

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  39. This post brought tears to my eyes!!! God is so good! Bella, you have an amazing family and a powerful Heavenly Father who adores you! I am praying for you, for your healing and for your comfort! Checking in on you each day and praying for good news each day! Love, Michelle
    Houston, Tx

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  40. Good morning Bella. Did you know the Monarch butterflies are migrating? They are. They are headed to Mexico. To warmer weather. They are the most amazing creatures I have ever seen. So delicate, yet so strong.
    Each time I see one (and there are LOTS!!!)I ask God show off in your life. To be SO big in your life that people (even Dr. Doom) can't help but think there must be something more. Praying...in Kansas City,
    Kathryn Farris

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  41. I am lifting you all up in prayer. I pray that sweet Bella will experience a miraculous healing and for strenght for you all.
    ~Danna from Kansas

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  42. Hi sweet Bella, My name is Angela and I work with your mommy. I remember when she told me she was pregnant with you and how happy, excited and filled with joy she was and is to have you in her in her life. You are a warrior and will see the other side of this. Pretty soon you will be playing with elmo and princesses again, can you picture it? Think about it Bella, think about going to the park to play with Ali, hold onto these visions and they will be your reality. I told my 3 year old daughter gracie about how well you are doing and she jumped up with her hands in the air and said,GO BELLA! lol, she is sending you healing energy too, we all are. Whenever you are feeling weak or just plain tired of this mess, just open your heart to the positive energy that is coming to you from us and all over the world. We are here to help you carry this any way we can, lean on us if you need to. We love you oh so much.

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  43. Good morning Bella!!! I woke up at 5am to a HUGE bang of thunder. I told my husband I needed to go check the radar. I did but I also had to check your blog. After I read the first paragraph I knew I could go back to sleep. I'm SO proud of you and so happy you're getting your numbers straightened out.

    This morning my son woke me up and he's watching a cartoon right now so I could finish your daddy's blog and write a comment. I just wanted to say good morning...but now I have to go make him breakfast.

    -Amy from Dallas

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  44. Sweet Bella,
    I did not sleep well last night, but everytime I wokeup and shifted around I was saying your name! Praying for you nonstop even in my sleep!

    You are on so many peoples minds because your daddy is right God sent you to teach us all that nomatter what life gives us it is all precious, all beautiful, all worth it! It is worth our struggle, work our work, work our pain to live this wonderful life, to care for people we love, and to CARE for people we don't even know!

    My life has not been so easy the last few years my sweet 12 yr old daughter has had some major emotional struggles that make life extremely hard for her and extemely hard on our family. Many days we are not happy and we verbally fight alot (so not fun)! I cry alot, but since coming to know you Miss Bella I have been trying so hard to stop saying "Why me, Why us!" and I have been trying to "Keep Moving" and "Keep Trusting" like your awesome Mom, Dad and sweet sister do!

    I will continue to pray and think positive thoughts because you will keep fighting and showing everyone how wonderful life is!

    A friend in NJ
    (Love all the awesome pictures daddy postsb everyday, but such a great pic of Mommy & You today! I know Miss Ali is waiting for you to come home and play so keep fighting baby!)

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  45. Good morning Ringgold family! I was so happy to hear the great news this morning. You all have an important part of this turn around and I'm so excited to be able to witness this miracle. Keep up the great work Bella, you have so many people rooting for you around the world. I plan on commenting more often instead of just being a blog stalker, I realize now the importance of you hearing from us prayer warriors. A friend from the UP of Michigan wishing/hoping/praying for more miracles.

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  46. Good job, Bella! You stay tough and keep fighting! I'm so proud of you!
    I'm still praying for ya'!
    Mental Hugs, Savi

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  47. Good Morning from Tennessee! Praying Bella has another great day!Keep fighting darlin'!
    Angela

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  48. I commented yesterday, but I forgot to mention something. Your girls look JUST like my sister and I did at their ages (although my little sister doesn't have EB). I had the long curly hair just like your older daughter does, and my sister looked so much like Bella as a baby :) Its so neat to see them

    Bonnie

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  49. Bella,
    I read your blog every morning as I eat breakfast. I have been following your journey since you started transplant. I found out about you through Jonah's blog. Your life has touched mine. You remind me to keep fighting, to keep faith, and to never give up. I cannot wait for the day that you get out of the ICU and even more excited for the day you are out of the hospital period. YOU WILL BE WELL. I pray for you daily. Healing is in His hands. Keep fighting!
    Kari Harman
    Minneapolis, MN

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  50. Dear Precious Bella,
    I have been privilidged to see, in your eyes , when you "locked me in your gaze," the strength and intenity of your spirit. While your eyes may be closed now most of the time, I think it is because you are marshalling all your energies to triumph so many oblicales.

    In an earlier post, someone referred to my favorite verse from Jeremiah, which has carried me through difficult times. I'd like for your daddy to read this to you every day.

    Jeremiah:29:10-14
    "Thus says the Lord...I know well the plans I have for in mind for you...plans for your welfare, not for woe! plans to give you a future full of hope. When you call me, when you go to me to pray, I will listen to you. When you look for me, you will find me. Yes, when you seek me with all your heart, you will find me with you, and I will change your lot.

    Looking forward to holding you again, and looking into your beautiful, amazing eyes.

    Be well!!
    Lots of love
    Nanny Sheila

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  51. Beautiful Baby Bella: This is for you....Our love, our daily thoughts, our prayers..continue as they have from the day you were born. You and your wonderful family have given so much through, courage and inspiration, there simply are no words....except your Daddy's favorite...PROVIDENCE...he is so right...when he says "there are no coincidences"..miracles,or PROVIDENCE yes, but not a coincidence. GOD IS GOOD ALL THE TIME.

    With Love
    Adrienne and Lee
    HUNTINGTON BEACH, CA

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  52. Bella and family.... I read your updates daily and continue to be amazed my your strength and resilience. EB has touched my family as well... we lost our butterfly angel (my great niece) back in december when she was 10 months old. Please continue to hold on and fight this amazing battle knowing that so many of us pray for you and your family everyday. I wanted to tell you that i am a 30 yr old mom to 5, and spend every day counting my blessings. Thank you for that. I also go to college full time to be a Medical Lab Tech .. one of assignments is to do a term paper on a disease that the teacher assigns us. I was assigned Hodgkins Lymphoma, but i sent the teacher an email outlining the basics of EB and that I'd like to do my paper on it because i want more people going into the Medical field to know about this horrible disease... and my teacher agreed :) I feel better knowing i can do even something small to help.
    well just wanted to share my story .... hopefully it gives you a small boost. Please know that people all over love and pray for you and you family.
    HUGS KISSES AND PRAYERS from MARYLAND for BELLA, ALI, and PARENTS.

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  53. WAY TO GO BELLA!!! Yesterday I wrote a little about my family to your daddy, today I'm writing to you.
    I'm so glad yesterday was a good day for you. & today will be even better & tomorrow will be even better than today. You keep showing the doctors who's in charge Bella :) I'm so thankful you had such a great day yesterday. I continue to pray for you Bella & for your family. What a lucky little girl you are. There are so many people who have never met you, that love you! We're all here fighting with you Bella.
    Have an absolutely blessed day Bella!

    Brenda (Kansas)

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  54. Little Bella,
    The places you will go,
    The things you will see!
    All because of the mustard seed,
    We share life, your family and me.

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  55. Bella, you did it! Thanks for making my day today. You and every courageous kid I have come across (from St. Jude in Memphis to Gillette in St. Paul) is why I'm working to become a pharmacist. You have a beautiful gift - the will to live amazingly. Thanks, Bella.

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  56. Dear Bella,
    I am a mother of 3 who faithfully reads your fathers words every day. Everyday your parents faith in spite of the struggles that you all face gives me the strenth to walk forward in faith. As I reach for Christ every day I am ever reminded that the world is not my home. But your fight reminds me that every stumble every fall, every drop of blood, sweat or tears that falls we give is for His Glory. Your Father on earth and in heaven are very proud of you Bella. You as Jesus said, are being the light of this world in your witness. Continue to shine brightly, be strong and know that you are all in our prayers. Tearfully and with Love, Laura, Josh, Emily, David and Charlotte. Indianapolis, IN

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  57. Hello to Sweet Bella from Watertown, WI
    I have been following your journey for awhile now and I just felt so moved to comment. Your posts are so beautiful and speak volumes about you faith and love.
    God has big plans for you, Bella and for your precious family. I am so excited to follow the rest of your journey and see exactly where God is leading you.
    Just rest and let God do his job.
    You are such a brave family, I admire your strength and your positive attitude.
    God bless all of you as you take his hand and let him lead you.
    Sherri Damman

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  58. Dear Bella--

    Teren and I are rooting and praying for you. We are amazed by your strength and perseverance. Your family and friends love you very much.

    Love,
    Brianna and Teren
    Cincinnati, OH

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  59. Hello Bella, Ali, Ang,and Tim! We check in with you and your family everyday. Our friend, Sara Cooper, first shared your story and now we feel as if we know you ourselves. We have commented from time to time and have been sending thoughts and prayers DAILY. I am also walking next to Sara at the CHOC Walk in October. Sweet Bella, you have myself (Shalimar), my husband David, my 2 year old son Salvatore and 4 month old daughter Valentina loving you and praying for you all of the time! And our extended family and friends are doing the same! I check in each night because I LOVE THAT GOD IS IN ALL OF YOU. And it is my favorite way to see and feel Him. I, too, love the struggles as much as the gifts because of what is meant to gain. We read this because we are parents and we have families and we love to see your beautiful girls. You know that commercial for Keebler cookies? The one where two sisters get the package down and there is only one fudge stripped cookie left. And the big sister (WHO LOOKS JUST LIKE ALI TO ME) looks at the little sister and decides, lovingly, to give it to her? And then she looks back at the package to throw it away and there is, amazingly, one more cookie left....just for her because she so sweetly thought of her sister? Well, we love that commercial because it is YOUR GIRLS! GOD BLESS!

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  60. Bella,

    You don't know me but I have come to know you and your family from your Dad's stories each night..Your Mom and Dad are the most amazing, loving, strong people I know. I keep saying that I couldn't do it, but after reading everyday what they do for you, I know I would have the strength do the same thing for my daughters. You are an inspiration to all of us, young and old. My 12 year old daughter asks about how you are doing everyday. Keep up the good work Bella you are an amazing little girl.

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  61. Dear sweet Bella-

    Praise God that you are doing better! Praise God for what He is about to show all of us (including Dr. Doom!) through you. I can't even begin to guess why God had this journey in His plan for you, but I do know that He is in control and has placed you with an amazing family who loves you and cares so much about you. And now you also have a HUGE "web family" - most of whom you haven't met - that loves you and is praying for you. I pray that this weekend will bring continued progress for you, and rest and encouragement for you, your mom and dad and your sweet sister.

    Your dad asked us to let him know why we visit your page. Honestly, I think it's another example of providence. I linked to your page through Jonah's blog - he has EB like you. I was sad to have to add another sweet baby to my "EB Prayer list" because I hate that it keeps growing, but was also so inspired by your dad's faith and ability to praise God in ALL things. Not in a cheesy, televangelist way, but in a real, humble, and reliant way. I'm excited to visit each day to see 1) how you're doing and 2) how God has moved in your situation.

    We have 5 kids in our family, and they are also praying for you and our other "EB friends" Please know there's a team of Andersons in TX cheering you on!!

    Laura

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  62. This comment has been removed by the author.

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  63. WE are TEAM BELLA and couldnt be prouder
    if you cant hear us
    Ill yell a little louder!
    WE ARE TEAM BELLA AND COULDNT BE PROUDER!

    thats r bella cheer!
    Keep the faith and fight for that baby girl! She needs to know you see the spark..FIGHT BELLA FIGHT!

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  64. Tim, thank you for sharing my family photo on the blog. My husband and I didn't expect you to, and we're touched that you did! What made me even happier today was hearing about Bella's "AMAZING" improvement in blood pressure since Thursday! I have a HUGE smile on my face now, and I expect it will be there the rest of the day. (God IS good!!!)

    I haven't had time to read everyone's latest comments yet (it's getting harder to keep up with them!), but I LOVE Susan's suggestion to have a "Miracle Tour" when Bella is well. I also like Swampgirl's idea to visualize a healthy and happy Bella in the future. I'm therefore going to combine the two ideas and start visualizing all of you on a "Miracle Tour." I believe it can happen!

    Prayers for another good day!

    Bonnie in OH

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  65. God is Great!
    Funny, I don't usuallly comment on blogs but I want you to know we are here!
    God is teaching ME new things on YOUR journey.
    I'm so glad your little body is healing and getting stronger.
    You will be in my prayers!

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  66. Bella and family --- In the movie Facing the Giants the coach reminds each one of his players that they can do ANYTHING with the help of GOD. He is watching over you and your family --- you are such a fighter --- way to go girl!!

    Some days are so difficult, but always remember that God doesn't give you the people you want (Dr. Doom); He gives you the people you NEED ..... to help you, to hurt you, to leave you, to love you and to make you into the person you were meant to be. You have been chosen for this journey and the effect you have on your readers lives is amazing. You make my faith stronger as I watch your faith in action.

    Hang in there Bella --- you have an entire team praying for you......

    Michelle & Family (including son, Ryan, with EB)

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  67. RALLY, BELLA, RALLY!
    "If God is for us, then who can be against!"
    We're praying for you,

    A Family in Tennessee

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  68. Wow, I just joined your blog, but we have seen families go through the deepest valleys and come out on the highest mountains, after major medical trama. Your baby girl is in our thoughs and on our prayer list!!! We are praying for a sweet miracle!

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  69. Bella, I was worried about you early this week after reading how frustrated, tired, and worried you family was. But now there is hope!! So much hope that I am not worried, you are going to be able to be a beautiful butterfly that is going to spread your wings to fly and explore! (and then your mommy and daddy are going to be worried again in several years when you and Ali get a little bigger they will again be staying up nights!!!)
    Keep fighting Bella!! We love you and are praying for you!!!

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  70. Dear Bella, You have been in my prayers for a while now - I check on you each night and think of you often during the day. You are so precious! What a little fighter you are! It is comforting to know that Jesus knows you inside and and out and He loves you very much!

    Love,
    Lisa in Wisconsin

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  71. Dear Bella... You are getting prettier every day! I"m glad to hear you are doing better, you yourself seem to be lifting your mommy and daddy's spirits as days pass.
    Like I told your daddy the other day, I have my own "Bella" and shes quite the little rebel herself. She's three, has this wild crazy curly hair and I always say "she's as wild and free as her hair"... I also have two other boys, One is 19 months old, his name is Jax and his 7 year old brother is Jace( rhymes with face)... her "boys" certainly keep her busy and shes like a little mother to them. Unfortunately they do not always like another mother, especially since its her way or the high way type issue.
    so Let me tell you about my one year old. He's a very lovey boy. he likes to kiss open mouthed (watch out ladies!) he also is in a streak(again) with wanting to be naked all the time. He calls everyone Mama..even daddy. He'll say daddy when he really really wants something that this momma will not give him..haha.(actually hes by my computer as I type this getting naked!)...
    my other boy, Jace like I said is 7. He was recently diagnosed with ADHD and aspergers. Your daddy can hopefully explain some day when you're a bit older what that's about. He was also in the NICU when he was a little tiny thing for about 2 weeks. He has an infinate love for music and his siblings.
    I'm a newer reader to your blog Bellagirl, but I'm keeping you in my thoughts and prayers and spreading your daddy's blog writing everywhere I can to get your story out. One day you'll be famous and have to get yourself some sunglasses like all the popular movie stars wear! wouldn't that be cute! I can just imagine your daddy buying you some little sunglasses and posing you in a photo of them.
    But I know in Minnesota its probably as cold as it is here in Wisconsin!
    well Bellagirl, I must sign off as the naked one still looms near and its like the 4th time I"ve dressed him in an hour. I hope to hear more about you, see more pictures and find more things to tell you.
    I'll try to get a photo sent your way soon of the kids so perhaps you can put faces with the names and the people who are thinking of you.

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  72. Great job Bella!!!!! You keep doing your part and we'll keep doing ours. We're rooting for you. Can you feel the power of God working in you? I'm still flooding heaven with prayers for you.
    Come on Bella, you can do it!
    Lots of love and healing kisses,
    Mandy

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  73. Bella,
    I've been reading about your journey for awhile now, and check in on you every day. Way to go today! I don't pray often, but I find myself thinking about you during the day and saying prayers for you to get well. You have such an amazing spirit and fight - keep fighting. We're all here fighting with you.

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  74. Dear Bella and Family...
    Just wanted you to know I have been following your blog for awhile. I found my way to it through Jonah's site. Wanting you to know that all of you are in my daily prayers. I pray for healing and strength for all of you...I wanted to share a website that I thought would bring you hope and encourage you to continue on those very rough days. The site belongs to my friend whose daughter, "Bella" was very ill about 5 years ago. Although she didn't have EB, she had necrotizing fasciitis, a flesh eating infection. As I follow your blog I am reminded of the trials Bella's parents went through. On the website you can listen to a couple of her songs...please take time to listen to "Follow Me Moon"...written by Bella's daddy and sung by Bella herself...also...on youtube.com you can watch the full length music video of "Santa Can You Make Me a Mermaid"...The website address is http://bellatales.com/about-bella If you think you would be interested in the CD...I would love to send your family one...just let me know. Again, I continue to keep all of you close in thought and prayer...God Bless You!
    Jane
    jrreynolds3@windstream.net

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  75. Okay, you asked for us to comment and I will... I'm not sure why I have just been lurking in the corner and not saying anything, but I wanted you to know...
    Bella, you are an inspiration.
    We lost two of our three triplets almost four and half years ago. Our two little girls. One was 3 weeks old and one was 9 weeks old. When I read about you it feels good to be rallying for a little girl. To have HOPE! And to every day come and read about how you are doing and SMILING when I read your daddy's latest words. I feel good about this. And one day we'll read your blog and it will read something about some skin disease you once had. Some people will think... what?! what is she talking about?? But we will all smile. Prayer is a powerful thing, which is a new thought for me. It feels good to do it and sometimes the results touch our hearts in ways we would never have imagined. And so THAT is why I read. Your daddy's words touch my heart and you give me reason to hope. If you ever see two little angel girls holding your hands and urging you to fight this thing, say hello to them for me. :)
    I pray for you and your family to feel God's love and peace every day. God bless you.
    Amy
    Minneapolis, MN

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  76. I check in daily for a Bella fix. Praying for all of you. I just read the comment above about triplets. My friend's sister had triplets, they all came home this week. All doing great. Their mom had a brain anuerism 7 days after they were born and is in a coma. I'll be fasting for her and Bella tomorrow. We believe in miracles here.

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  77. I have been following this blog very closely and praying for Bella since I came across it. What a story, what a girl. I will continue to pray for Bella's well being, whatever God decides that is.

    However, there is something I have been hoping would go away for quite awhile now, and I have been holding off on posting, praying you would realize the disservice you are doing... and that is that you would stop the insults and negativity you throw at the medical staff caring for your daughter via this blog, Mr. Ringgold. As a parent I can understand the frustrations you must go through on a daily basis as you pray for her to get better and watch her get worse. Some days you must struggle just to get out of bed to only face more setbacks. However, your daughter would not be here to have the setbacks and (now!) progressions if it wasn't for the Dr. Dooms and other medical staff you feel are so incompetent working to save Bella. Part of me wonders how you can preach the word of God yet be so judgemental of the people you chose to care for Bella. God put the ability to save your daughter into their hands. It saddens me that you have a tough time seeing that in moments of trial and frustration. I don't believe a loving God would be as hard on these folks as you have been at times. As our family follows and prays for Bella, we will pray for you also that you find the ability to be humble and accepting of these 'j@$$&$' that are caring for Bella. As it is their job to try and return your daughter to you as they had hoped upon her transplant, it is probably increasingly difficult for them too when she takes turns for the worse and becomes the 'first' in many of the situations she has faced. The medical staff has gone into their profession to help children just like Bella and just because you may not like one or two of them that step into the room, I would bet their goal, like yours, is to see your daughter get well. Try not to forget that in all of your frustration. Again, they are part of the reason Bella is still here for you to love and enjoy. Your blog reaches many, many people around the world. Some that may have to face a decision like yours some day of where they would choose to transplant and/or take their child when they need care the most. When Bella makes it through all of this it will be your perseverance as well as the care of the medical staff and Bella's strong spirit that will have gotten her there. It would be a shame that because of the way you have portrayed these people that someone may forgo getting help for their own child. I pray for your ability to learn to love even those you don't care for...they probably love your daughter more than you realize.

    May God Bless You, Bella, and continue to watch over you as you fight to recover and conquor all that has been bestowed on you. What a beautifully strong girl you are.

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  78. Give me a b - B
    Give me an e - E
    Give me an l - L
    Give me an l - L
    Give me an a - A
    BELLA - Go Bella - You GO, girl!!
    You're doing it, little girl!
    Now, come on! Those kidneys must start working.
    We all want some pee pee from you!
    Pee, baby, pee!!
    You'll feel soooo much better when you do!
    It'll be another step closer to getting out of there!
    Home with daddy
    Home with Mommy
    Home with Sissy
    HOME! HOME! HOME!

    I'm not much of a songwriter or a poet but I give you my best, sweet baby.
    Still praying....
    Carole from Indiana

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  79. Hello,
    I started out reading Jonah's blog and then moved on to Daylon's blog and then found Little Bella. Honestly, I didn't want to follow it. I just didn't want to get hooked on another one. After reading it a few times it became part of my nightly routine. It's amazing to me how you are all able to fight so hard. I sometimes wonder what I would be like if I had a child in Bella's position. I'm amazed at how you are able to see God through all of this. I am proud to be witnessing this miracle and reading this blog has really strengthened my faith. Thank you. Sending prayers and happy thoughts your way from Rock Rapids, Iowa.

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  80. This is the first time I've posted a comment on your blog. We serve an awesome God and He alone is in total control. He is still a miracle working God! I've been so inspired by Bella's story and praying for all of you.

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  81. Dear Sweet Bella,
    Everyone is so proud of how hard you are fighting! God has a great plan for you indeed...we are so looking forward to the coming days and weeks as you get stronger and stronger and for the day that you will say, "yea, I was born with a rare skin disease, but when I came home from the hospital it went away".
    Many Blessings,
    The Gleason's

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  82. Anonymous dr, nurse, wife of dr, or whoever you are, you truly need to get a life and STOP criticizing Mr. Ringold. He is/has only been caring for his beautiful daughter and fighting for her as any of us would including you had you been in his shoes and your child laying in that bed. As all parents have experienced at some point or another, there are drs who are absolutely way too cockey and certain of themselves. And don't take the time that they should to try and get to know the patient and simply not categorize them into the same category as everything else. I will gladly say that I have followed other bmt blogs, in which there have been mistakes made that simply shouldn't have been made! I also know doctors and nurses are human and make mistakes as we all do, however that being said, Bella's wonderful father is doing the right thing by being there with her and trying to protect her from medical mistakes that could easily happen. You should understand that much, considering your knowledge on the whole situation, obviously! Bella's family is extremely blessed to have her, as she is extremely blessed to have them there to protect her from real mistakes that could, and does take place everyday. So look at yourself and criticize yourself before coming here and blasting Bella's family because your afraid others may see what really goes on with some dr dooms there. OTHER parents should know these things that happen so they will be able to know what to be on the lookout for, whether in MN hospital or wherever they decide. Also, if you will look back you will see that Tim was still grateful for dr doom, even after dealing with his attitude. P.S. Whomever said Christians/ religious people who believe in God as I and many others do cannot be angry and vent every once in a while!!!!!!!


    BELLA stay strong baby girl!!!!!!!!!!! Remember your wonderful daddy and mommy are fighting for you and will forever and they love you so much!!!!!!! We love you and you family so much and will be continuing to fight and pray for you as well. I was excited to hear that your blood pressure was better!!!!!!!! I can't wait to hear from your amazing and brave daddy tonight!! I also cannot wait to see you playing with Ali again!

    God Bless You and your family sweet baby girl!!

    Love,
    Susan, from Alabama

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  83. Bella & Family,
    We are a fellow EB family. We are Pete & Adrienne, Elizabeth (9), Patrick (7), and Caroline (5 - Junctional non-herlitz EB). When Caroline was born, she spent 133 days on the PICU at Children's Memorial in Chicago. Your posts transport me back to that time of day-in-day-out hospitalization, each day looking the same inside the gray walls of her PICU isolation room... enduring the (sometimes not-so) controlled chaos of ICU medicine, difficult decisions, and constant stomach knots... and the need for advocacy for our Sweet Caroline - all while trying to keep life as 'normal' as possible for our other 2 children at home (then 4 and 2). It was a constant battle to turn the deep-seated distress for our child over to God, but there really is no choice. To try to contain all that burden ourselves is insanity, and we, too, would feel the quiet peace when we remembered He was there with us. You accomplish all this so beautifully. We are in awe of your stamina, your humor, your faith, your intelligence and your ability to advocate for Bella in the very best ways. We are SO PROUD of you, and proud to have you represent the best in EB families to all who are reading your blog. Our hearts soared with joy in reading the last couple of posts with new ideas for possibly solving some of Bella's issues, and we are sending double prayers that they will bring positive outcomes. Like Bella, Caroline defied many odds many times over, and had that fire in her deep blue eyes that couldn't be denied. Despite her very traumatic and doubtful beginnings, Caroline is a smart, sweet, loving, funny, and fiery 5-year-old who brings joy to each day... and we KNOW that Bella and you will someday retell a similar story. We have not posted too often, usually because my heart is so full after reading your posts I don't know where to begin to comment. Please know that we are with you in spirit. As I've commented before, these blog posts should be compiled into your next book - with the happiest of endings being the last chapter!! Stay strong, all of you. Gentle hugs from Sweet Caroline to Beautiful Bella!!

    The Provost Family
    Palatine, IL

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  84. I have been riveted to Bella for quite some time. In fact, this blog remains open in my tabs on my browser all the time. I never close it. Last night I literally fell asleep reading the latest update. I still had my laptop on top of me at 3am. OOPS.

    Anyway, much love to all of you from your home state. I'll be sure to ride the fake Mississippi when we go to Disneyland next.

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  85. Hello Bella! Thanks for fighting so hard to come back to us. I thought about you today, no particular reason, you were just on my mind. I hope your doctor becomes a believer after getting to know you and watching your amazing recovery. I don't mean a believer in God, although that would be fine by me, but I mean a believer in miracles and people. A believer in humanity and the fact that you can never give up on a patient because she's a person.. and people can do amazing things. You remind us of the importance of these lessons daily, and for that I thank you. All the best and lots of love, beautiful baby girl.
    Emily Monteer Morrow
    Ft. Lauderdale, FL
    ps. I've started commenting daily.. it's like a conversation that way =).

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  86. Sweet Bella,
    Tomorrow you will have beautiful,colorful, loving comments and prayers for you up on your walls- they are half done, and the rest are coming! Its been so fun to read everyone's comments while putting them together. You are so loved, by us included. Not a day has gone by in I can't even remember when, when I didn't think about you and send my love to you. Your Daddy is right when he says that you are here to teach, and you have impacted so many of our lives more than you will ever know. Keep fighting- you will win!

    Love Amanda Bryce and Corynn Schauer
    (Minneapolis)

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  87. I am Bella's Grandma Carolyn and want to thank Susan H(above) for her comments concerning the "anonymous" writer who thinks it is their right to critize my son-in-law Tim. Whoever you are you have no idea what Tim, and my daughter Angelique and my grandaughter Ali is going through. You are not there with them and see what they go through on a daily basis. I have been there, I know. You have not been Tim for 84 days in that hospital room with Bella. You have not been my daughter Angelique working to keep this family going while her daughter is in PICU. How dare you say anything negative about my family. How easy it must be for you to say such things since you are not in their shoes. They have lived with and have had to deal with this terrible thing called "EB" from the very moment Bella was born. Taking care of EB is a 24/7/365 job, there is no rest. Although the medical staff knows their jobs, Tim and Angelique know their daughter better than anyone. They work with the doctors and staff but, they also have the knowledge to call them on something that they know is not right for Bella. My granddaughter Bella is a beautiful little girl and does not deserve nor does the family deserve such awful comments. One thing no one does is mess with my family.

    Grandma Carolyn

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  88. Angelique- I have been thinking of you today. Especially after reading todays post. I am so happy that you have the job you have. One that allows you the ability to work "at home". One that gives you the time you need for Bella. In a perfect world you could be with Bella all the time and still be paid. Actually in a perfect world Bella would be EB free. My heart aches for you and the fact that you cant be with Bella as much as I know you would like. But in my eyes this makes you one amazing woman. I wish I could find the words that I hold in my heart and I hope this is making some sort of sense to you. I know how hard it is to have a child in the hospital. Thankfully for us our stays have been short but hard. I dont know what is like to not be there for my "sick" child but I know what it is like to leave my other child "behind". I guess in the end I just wanted to acknowledge your strength. You are one amazing mommy and someday Bella will want to be just like you.

    BTW Grandma Carolyn...you rock!

    Denise WI

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  89. Bella...you keep rocking sweet baby! I cant wait to get my hands on your book. I told my husband I want it for Christmas. It is funny though because it feels like I am "reading" the middle before I read the beginning of your amazing story.

    So far I have collected over 200 soda tabs because of you (dont worry I didnt drink it all). They collect them at my step daughters school for the RMH. I hope to have a thousand by the time the collection starts. All of this because of you. Last week I started to say a prayer every time I threw my tabs in the container. Feel the love sweet little one...feel the love. XOXOXO

    Denise WI

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  90. Man, y'all are awesome! I love how y'all fight the good fight! Keep it up, we ARE rooting for Bella!
    Still praying in Central Arkansas!

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  91. Tim:

    Sending our very best wishes from CT. You have really given me something to think about in terms of faith and determination. I truly believe the care she has from Mommy/Daddy are making the difference in her recovery (in addition to all the prayers).

    As one reader suggested, you can never be too careful in monitoring her care. You and Ang and Ali have an interest in her outcome that surpasses the interest of even the best of physicians. Also, doctors have multiple cases to monitor and you have one (and a complex one at that- beautiful too). Keep being her champion and her advocate.

    You have given so many so much to think about.
    For me, it's your grace, humor, and finding anything positive that make your writing so unique. It's Bella and the little girl underneath all that extra fluid that keep me glued daily. I can't wait to see her shine with her eyes wide open (as she is shining even when they are shut).

    Pee Bella Pee!

    Rally Belly Rally!

    Enjoy the fall in MN, but get your bags ready for CA :)

    Best wishes from CT & NJ

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  92. I was sitting thinking about you guys the other night and this poem came to mind about Bellagirl.

    "invictus"

    Out of the night that covers me,
    Black as the Pit from pole to pole,
    I thank whatever gods may be
    For my unconquerable soul.

    In the fell clutch of circumstance
    I have not winced nor cried aloud.
    Under the bludgeonings of chance
    My head is bloody, but unbowed.

    Beyond this place of wrath and tears
    Looms but the Horror of the shade,
    And yet the menace of the years
    Finds, and shall find, me unafraid.

    It matters not how strait the gate,
    How charged with punishments the scroll.
    I am the master of my fate:
    I am the captain of my soul.

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  93. I have no inspiring words. I am proud of you Bella! I am in awe of your parents and sister too.

    Allison, NJ

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  94. I, too am insulted by the anonymous comment about you expressing your feelings and I hope this will in no way affect your writing each night. Usually a person whose life is easy with healthy children feels free to look down on others. "Forgive them,they know not what they do." Didn't someone else say that during suffering? It hurts that someone would chose to judge during this ordeal or anytime for that matter. Keep up all the good work going on in this world that you are doing. Love from Greenie

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