Thursday, October 7, 2010

October 7: Day +97


Heaveno!

RING RING! RING RING!

7:03 am. Nope, that wasn't my alarm clock, that was the room phone. You know, the room number that ONLY the PICU staff has - "The Bella Phone."

"Bella Hotline. Tim speaking." Just kidding.

"This is Tim," my more professional, "Give me the facts," answer.

"Hi Tim, it's (Bella's night nurse). I just wanted to let you know that Bella started getting really acidotic over night and we had to put her back on the vent and turn her rate up to 24. Just wanted to let you know so you wouldn't be shocked when you came in."

"Thanks."

I wanted to say, "So, shock me out of bed instead," but I had just been shocked out of bed, and my mouth didn't work so good. Probably for the best. Remember, phone calls on the Bella phone are never good, so I am always scared to answer. What a start to the day.

And it didn't get any better from there. Take a deep breath, here we go!

First, I walked in, and Bella was covered in extra layers and even a blanket over her hat. Hmmm... the nurse indicated she was about to send off cultures because her temp got too low. I scowled, knowing how long Bella was uncovered yesterday, thinking that it was just because we had her out from under her covers for too long.

Nope. Not quite. Her temp was 92 over night and the warmest we got it was 95.9. It was 93, 94.5 (even with the bear hugger heated air blanket back on). Her chest x-ray also showed a significant change in what looks like an infection brewing, as well as some atelectasis (collapsing) in the right upper lobe. Could spell an infection. Her blood gas pH over night was 7.05. Folks, that's really, REALLY acidotic. That temp is really REALLY low. The two KEY indicators for enzyme health and function in our bodies are... yup... pH, and temp.

So we had to crank up the vent to 28 (practically square one) to get her blood gases to appear normal again, and we had to crank up the bear hugger for the first time in a week to try to get her temp back up. The problem with the bear hugger is that it makes Bella's blood pressure TANK. At one point when we turned it on, her blood pressure was 40s over 30s. The nurse frowned at the monitor, and I asked her, "Which would you rather frown over right now, blood pressure, or temp?" We were fighting two battles at the same time, and to help one was to hurt the other. Not good.

Can you spot the good news inside that paragraph? We actually could read her blood pressure, thanks to the new A-Line we got today! That thankfully went very well. Unfortunately, we couldn't get it in till about 1:30, so we were flying blind with blood pressure from 5pm yesterday; we can't get cuff pressures off Bella to save our lives. Thank GOD for the A-line. We would be so screwed without it.

I found out something that anyone involved with EB care should pay attention to:

DO NOT INJECT lidocaine to pre-medicate a site you need a suture or stitch in. It produces a blister, and compromises the integrity of the skin. That's what happened with the A-line yesterday. The doc that came in today, Dr. Sidell, explained this, and the whole debacle made perfect sense. If you infuse lidocaine under the skin in an EB kid, it will just fill in the layer missing anchoring fibrils and just separate the skin into an instant fluid pocket/blister. The reason the stitches tore out so easily yesterday is that the surgeon who put them in used lidocaine first. So, try a different pain management approach... either a PRN or even topical lidocaine maybe.

Anyhow, we have a new A-line that works great. We also have a new BMT doc. Good guy. However, we had a pretty sobering conversation about Bella today, just like on day one with Dr. D. He was quite a bit more tactful about it at least. The BMT docs are pretty worried about Bella right now. Her liver is getting worse, and she is starting to have multiple organ failure. No kidneys, a compromised heart, weakening liver, lungs were good up till yesterday.

The one big area that he and I discussed today is Bella's brain. The one chilling thing that I've noticed lately is that we have weaned a TON of sedation off Bella. A TON. We are at .2 of precedex, and we are not seeing any more alertness or wakefulness in Bella. The ICU team has been conspicuously silent about this, and when I brought it up with my nurse today, she had a very unique look on her face; one that I hadn't seen before in the months we've worked together. It was saying, "We haven't wanted to say anything to you, Tim, but... she should have awakened by now."

I told her it isn't lost on me; the ICU team says more by what they don't say, then by what they do say. This morning in rounds, no one would look me in the eye or say good morning to me. There was a very somber feeling in the air. They were clearly uncomfortable with this change in events and when I went back into the room, I saw them immediately start talking amongst each other fervently about Bella through the window. It was as if they were waiting for me to leave before they said the things that were really on their minds.

Anyhow, let me finish up on the day. After we got the A-line back in, we had a heart echo done to measure how her dynamic outflow obstruction (LVOT) and mitral regurgitation were doing.

Then, it was on to changing her ulcer dressings and her trach. We change out her trach on Thursdays. We also had to redress two of her lines and a couple of other bandages due to her bleeding out so much from yesterday's heparin and platelet fiasco. Turns out the renal doc gave Bella a heparin bolus yesterday instead of just increasing her rate after getting a low heparin count once we went back on the circuit. This sent her heparin (blood thinner) reading through the roof and it took several hours for her body to metabolize it. Combined with a new lower platelet setting to offset any further clotting, and we had the perfect storm for wounds to leeeeeeeak. Amazing how much blood can leak out of your body when your ability to clot is AT ALL compromised. Amazing.


Ali visiting her little sis...

The only part of the day I enjoyed? Reading your comments. When I hold her hand while I read to her, I feel the energy of your words flow through my hand into her little body. Tonight, she didn't squeeze back. Folks, she is pretty sick right now, and needs all the prayers and intentions, thoughts, wishes she can get. I promise that I send every ounce of energy into every word, and yes, even accents when asked for! That part is fun! I try to imagine what all your voices sound like as I read your words. I feel so close to those of you that open up and really talk to Bella. I am just so touched that you take the time to write to her and share with her your most heart-felt encouragements, thoughts, prayers, and wishes. They are so wonderful to read; they are medicine for Bella and for me while I read them! Please, please, please, if you haven't commented before, please break out of the silence and into Bella's hospital room.

P.S. We held off on the new drug. Dr. Wagner, her chief doc here, just isn't convinced it will do anything, but it's not off the table. We are also talking about some other out of the box ideas, but I'll save those until they actually become plans.

The docs are using phrases like "our backs are against the walls," and "[if she doesn't make it], at least you know you did everything you could." Folks, I'm getting groomed by the docs, and by more and more of them. I am really scared for Bella right now, I'm not gonna lie. She is w-i-p-e-d out right now, and very, very sick. Her heart rate never climbed above 120 today, which is low for her, especially during wake states, which there was little to none of today. I am just so sad right now.

However, we all know what a roller coaster it is here, and how much goes on in 24 hours. A day from now, things could be entirely different. They were today! Thank you all for your unwavering support. Lift us up now more than ever, I humbly ask you. We are tired, and we are scared. I know God holds us in his hand through this, and despite everything happening, I find little things to marvel and rejoice in every. single. day.

For example, have you ever watched a squirrel run up a tree, then stop and turn around and just "stand" upside down, facing down? How do they do that? I saw a squirrel do that on a building here. I love those little pests!

I heard from one of my closest friends in high school whom I lost touch with after graduation today for this first time since 1990.

Ali has these awesome "Twinkle Toes" sketchers sneakers that light up when she walks. On the walk home through the park, she lit up the park like a dance floor with every step she took. Man, that was cool!

Yesterday, Judy, the RT Educator who made Bella's amazing swim cap, dropped in with winter clothes for Ali so we wouldn't have to buy a bunch of stuff we'd never use back home!

One of my FAVORITE guitarists, Wayne Jones, wrote me on facebook today after I requested to friend him. I told him that I use his music both with Bella and with many clients/ groups in music therapy. He wrote and asked which CDs I had, because he'd like to send me some more!

I had YUMMY hot turkey, mashed potatoes, gravy and killer veggies in the cafeteria. Killer comfort food for a beautiful fall day!

My belt buckle fit at the tightest rung today! Don't know HOW that's possible...

I thought I really injured my shoulder jumping in the leaves on Sunday. Today, it hardly bothered me!

I read to Bella from you all at least a dozen times, "One day Bella, you WILL look back and say, "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away."

God night.


Ali hangin' with the car show at RMH tonight...


Getting close!

171 comments:

  1. Bella -
    Sorry you had such a yucky day. Yucky days have been going around. I've had a week of them. I know that a week of yucky days is nothing in comparison to yours - but still. Ugh. Life in my NICU this week has been awful. Lots of sick babies. Babies born really little / sick. Bigger babies getting sick. Babies who were doing better getting sick again. Today is my sister's birthday. She would be 29. She was born with several congenital heart defects, and she spent 17 days here on earth. I work in the very NICU that she spent her days.
    Sorry for the ramble - I guess misery loves company. Or something like that. Hopefully we all, especially you, have a better day tomorrow.

    Jess
    Chicago, IL

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  2. Oh my I thought Bella is doing better.... Remember how she poorly was a week or so ago and then suddenly turned for better. Sending hugs !

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  3. I've never commented before, but I'm sending a virtual hug Tim. One for you, one for Angelique, one for Bella and one for Ali.

    A grandma in San Diego

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  4. Precious Bella ~
    I am so sorry your day was difficult. I hope and pray that tomorrow brings healing and signs of improvement! You have such loving parents who are doing everything they can to see you get the best care. Our God in Heaven has you in His hand. We pray that He will allow you to live and grow and thrive here with us! Oh I can't wait for the sight of those pictures! You are a fighter and you are loved so much! I love your pumpkin hat on your sweet head. I love seeing all of the pumpkins popping up here. The weather in Texas continues to be beautiful and it is so nice to leave the windows open in the mornings. We have to turn the a/c on about noon tho. I have learned this year more than ever, each day is a blessing and I am thankful you are here. Hang in there sweet baby and I will keep up the prayers. Lots of love, Michelle

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  5. Oh Bella, honey. Hang in there. I am crying to read this entry, because I can't imagine how worried your family and friends are after a day like today. But you have surprised everyone before and you can do it again. I will be thinking about you until I can read the next update.

    I love music and was listening to this John Butler Trio song the other day called Peaches and Cream. I thought of you... I know you are like "peaches and cream" to your mama and daddy and I wanted to share it with you... so here are the lyrics:

    Well there's far too many questions to ask,
    To answer any of them tonight.
    For I wear too many masks,
    To tell if any of them are wrong or right.
    And confusion casts a shadow up on me,
    Like a great big cloud in the sky.
    And now I pray for rain,
    Cause it's been so long since I let myself cry.

    For so long I've sang this sad ol' song,
    And it feels like my time is up.
    For she came and landed in my arms,
    And she filled my half empty cup.
    Yes she filled my half empty cup.

    There you are right in front of me,
    A brand new day sunrise over sea.
    No longer my cup half empty cause there you are,
    You and your mum in front of me, in front of me.

    And now I look up above me,
    And I thank that great ol' God in the sky.
    For tellin' me my cup ain't half empty,
    It took my little girl to show me why.

    for so long I sing this same ol' song
    and it feels like my time is up
    for she came and landed in my arms
    and she filled my half emty cup
    yes she filled my half emty cup

    there you are right in front of me
    a brand new day
    sunrise over sea
    no longer my cup half emty
    cause there you are
    you and your mum in frount of me

    You're peaches & cream to me.
    You both are peaches & cream to me.
    you and your mum in front of me
    peaches and cream

    all i know is
    all i know
    is i love you
    ya i love you
    all i know is
    all i know
    i love you
    ya i love you
    all i know is
    i love you
    i love you

    ...

    Best wishes and energy and love,
    Cara in Tucson

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  6. Deep breath. Big sigh.
    Sweet Bella. You and daylon make me smile because Just when the grownups think they have you figured out, you prove them wrong. We need you healthy and are praying for a better day tomorrow.
    Tim and Ang, you've got so many on your side....take care of yourselves.......love from home.

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  7. Loving you from California, sweet baby.

    I believe in your superpowers - you inherited them from your Daddy!
    Keep fighting.

    Kirstin
    San Jose, CA

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  8. Please, please, please, please, please God....please, please, please, please...

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  9. I am so saddended by your news tonight. I pray that Heavenly Fathers Will Be Done. I pray that she can be strengthened and made well. I pray for you and your family that you will have strength and peace And that the Doctors and professionals my find the right combinations to help this prescious little person.
    Bella my thoughts are with you every day even though I have never had the pleasure to meet you or your special family. May Gods great strength hold you up.
    A Grandma in Oregon

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  10. I have been a reader for awhile now. As is the case with all of the little blessings with EB that I pray for, I came by way of Jonah.

    Tonight I went to bed exhausted but the beeping on my little boy's feeding pump went off not long ago and after I fixed everything I laid back down but felt the need to grab my phone and log into my blog reader. I just saw this post.

    I am now out of bed and down the hall and completely compelled to be more than just a silent witness to Bella's fight.

    I want you to know that I love your family in a way that would be hard to explain to anyone I know. My heart absolutely aches at what Bella's little body is enduring.

    One thing that I believe to be absolutely true is that Bella, while in her current state, is being comforted each and every moment by the soft voice of God. When my own little man was in a coma I felt an energy around him that was not of this world.

    It brought me great peace to know that he was not alone inside of his head when he was in that hospital bed. I am not sure if he could hear what *I* was saying to him or not, I certainly hope that he could, but I do know that he felt love, comfort and peace from the voice of our Heavenly Father.

    I often look at him now and wonder what he and God talked about during that time.

    Bella, you are a precious gift. God gave you such an amazing Mommy, Daddy and Sister to show you what love and devotion, in earthly form, can be. I know that one day, when you are healed and older, you will read these entries from your Daddy and stand amazed at his fierce determination to give you every chance at the best outcome and that each day his love for you filled your room and hugged you tightly. I can feel that love all the way here in Maryland.

    You are a very very lucky little girl to have such a wonderful family and Bella, they are so incredibly blessed to have you too.

    Actually, we all are. You teach me things Bella. You make me better understand what is important in this world. You are stronger than I will ever be. I love you sweetheart. As much as someone can love you from words and photos...I do.

    Keep fighting, sweet baby girl. We are all so proud of you and stand in awe of your strength.

    Much love to all of you.

    Mindy
    Cumberland, Maryland.

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  11. Sweet Bella I'm sad you had a hard day. You are always on my mind and I pray for you all the time, holding you close to my heart.
    Lots of love,
    Mandy

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  12. Sweet Bella, We are all praying for you and/ or sending positive energy to you and your family. Bella, feel the energy and the power of our prayers for you, let them enter your body and give you the strength to fight off these complications and get better each day. Praying for you Bella, Judy T. (Leah's Grandma) Bowie, Maryland

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  13. Dearest Bella,

    What a horrible, no good, very bad day. I pray that tomorrow you find the strength to open your eyes and give your day a 'long hard Paddington Bear stare'. Paddington Bear is one of our favourite books - you make sure your dad reads them to you.

    God bless you wee one, you and your Dad and your Mum and the best big sister.

    Love Bec xxxx

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  14. heaveno!

    sweet bella...i hit the refresh button and guess what, you were the first person i saw on my birthday! for my birthday i am praying that you will have a peaceful, restful day!

    i hope your daddy is trying to read this is his best north carolina accent. if he's not sure how that should sound your aunt mary thinks she's good at it so maybe she could read my post over the phone... hahaha ;)

    i am also praying that your mommy and daddy will be filled with joy knowing what a wonderful job they are doing as your "mouthpieces." you are so blessed to have them for a mommy and daddy! your big sis ali is also a blessing!

    sweet bella, help your daddy to be strong.

    god bless y'all
    susan
    w-s,nc

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  15. Hi there Bella. It's okay to have one poopie day a week; we are glad that the poppie day is over. You are saving your strength for your turnaround this weekend. Get lots of rest and do lots of healing and when you are ready, wake up for daddy, mommy and Ali. We know you miss them as much as they miss you. Can't wait to hug you when you come home. We love you.
    Jen, Jim, Kellen and Nolan.

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  16. Tim,

    The thing that brought me out of anonymity around September 21st was a word you used about Bella's situation - you said things looked 'dicey'. I felt so guilty for reading and not supporting that I chucked my anonymity to one side and peeped out. Along with an army of other people.

    You have exhibited such strength over the months that a chink in your armour is indeed inevitable. It's also a sign for your troops to rally. I think we all know that the beautiful Miss B is in a very difficult place right now; however, your silent but deafeningly loud chorus of supporters can and will shout into the night in defiance of any further diminution of her spirit. We won't shut up. We won't give up. Because you don't.

    There's a world wide web of support for Bella. We've all heard that WWW term used in other contexts, of course we have. But this world wide web is different. We're all weaving a net of support for you and your girls, Tim. We are beginning to recognise each other's voices. I think of small sentries of people, dotted about a map of the world, like little lights fading and brightening as each goes off to sleep or wakes up, wondering about your family and taking a deep breath of optimism. Each and every day. And each and every night.

    I shall still be yelling from the rooftops. As is my wont. With or without my multi-lingual dictionary...

    We love that beautiful baby Bella with the bonnet. Hang on, sweet girl,

    Jane, with a bucket of fondness for all of you
    x

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  17. I'm praying for you too Bella!! It's hard to read news like this, but I'm so thankful that God is still God and He is still good. I'm trusting in Him, just like your Daddy is Bella and we are asking Him to help you feel much better tomorrow. You are a wonderful little girl and we are so happy that your Daddy has been so sweet to keep us updated on you. We'll keep asking God to heal you and that He will carry and strengthen your Mommy, Daddy and big sister. We love you Bella!!!

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  18. Bella I have been read your Blog since your birth. I have said many prayers for your family. We just want you to turn that corner and shock every one. I know God knows the plan your life is to go in. We pray that you are healed and with your parents. It hurts too bad to think you may meet God so early in your life so please wake up and get stronger. We love you Bella!

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  19. Dear Bella,

    I have commented a few times, but have never written to YOU! I wait up every single night to hear about your day! It is one of the most anticipated moments of my day! I am so grateful that your Daddy is so dedicated to updating your blog! I am sure there are nights when he just wants to crash! You are such a part of my life and I feel like I really know you and your family! I love how something like a blog can make you feel so connected to someone you have never met in person! I think about you all day long and pray so hard for you! My heart hurts for you and I would do anything if I could take your pain away for even just a few minutes so you could be a typical 1 year old. However, you are far beyond typical! You are extraordinary! In your short life, you have inspired so many people in many ways and on many levels. You have already accomplished great things and more than most people can in a lifetime! You and your Mommy and Daddy are my hero's and my inspiration! I don't believe that everything bad happens for a reason... I think crummy things just sometimes happen to really good people and God is here to help us through them. I know God is fighting right alongside of you and so many people are talking to God on your behalf and lifting you up in prayer and thoughts! I hope while your Daddy is reading this to your right now, you can feel the energy pouring out of my heart, to my computer through your Daddy's voice! I hope tomorrow is a much easier day on you! Don't give up! I believe miraculous things can happen! My brother in law was in a horrible car crash just 2 months after he and my sister wed and almost lost his life. He was in a coma for months. My sister was told he may not make it and if he did he would never feed himself and would be a vegetable.... He just graduated from law school! My same sister gave birth to my niece and nephew at 24 weeks. They were told that my niece had two level 3 or 4 brain bleeds and that they should let her go. Now she is a smart, happy, full of life 3 year old! Doctors have really good intentions, BUT, they aren't always right about things! You just keep fighting, you are fighting so hard! I am fighting in spirit right here with you and your Dad and Mom!!! Go Bella GO!

    So you can know a little bit about me, my name is Kristi, I am married, have three daughters and am a stay at home Mom. Karlee is 10, Izabella is 4 and Olive is 6 months. We live in Castle Rock, CO which is a southern suberb of Denver.

    I hope tomorrow is a better day for all of you. Keep fighting perfect girl!

    Sweet dreams,
    Kristi

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  20. Dear sweet Bella,

    My heart is breaking for you right now, and for your sweet family. But one thing has not changed - God is good, and He has a plan. And He also hears the prayers of His people. I'm praying for you right now, that God will heal you, and give your amazing family strength, courage and peace. We love you all the way from Texas!

    Laura (for Team A)

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  21. Hello Bella! (reading this in the best Yooper accent you have) I woke up in the middle of the night and I got on my computer to read your dad's update right away. It just broke my heart that you had such a bad day sweetie. I think about you all the time and just hoping that you're going to turn the corner for the better. I feel the sadness in your dad's words and the hope he has for a better tomorrow. You are such a fighter Bella and I just pray for all of you to have peace. Hoping/praying/wishing from a friend from the UP of Michigan.

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  22. Sweet, Sweet Bella! You can do it! You can beat this and get better! You have to stay strong sweet girl... I know you are tired... but please dont give up! You have so many people who love you! Your Mommy, Daddy and Ali love you soooo much and are fighting right there next to you! I spent most the day today reading about your incredible life! You are a strong little girl! I look at my little Bella in such a different way after meeting you (via your daddy's blog) I am sooo lucky to have my very own sweet little girl to love on! Just like your Mommy and Daddy =0) I want to share with you a poem that I wrote when I was feeling sad and having a bad day. Its about a Butterfly... ( I love butterflies)

    Wake up, good morning...
    Its a brand new day!
    Another chance to start over, another chance to pray!

    Who am I? Where do I belong? Please bless me today!

    Please guide me, please surround me.. Please help me find my way!

    I can feel you around me, the warmth of the sun, I can feel you beside me, I'll try not to run!

    It's then I see it... a single butterfly.. so beautiful, so fragile, look how far its come!

    Will that be me? Will I too be alright?
    I put my trust and faith in you, for you are my light

    Give me the strength I need to make it another day! Please God surround me, and I will be ok!

    Give me Hope, Give me courage, Give me the strength to go on...
    For I will look for you tomorrow, at the break of Dawn.

    You never know what could happen, I'll take it day by day
    Dont let me give up now.. dont let me break away!

    Just guide me God, help me to get by...
    You never know what could happen... maybe someday I will be that butterfly!!!

    sweet Bella... you are that Butterfly! You have already come sooo far!!
    I will say my prayers again for you tonight! And for your Mommy,Daddy and Ali!

    I love you all! Stay strong!

    xoxo
    Sarah in Colorado

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  23. Darling Bella,

    You are an amazing, awesome and inspirational girl - keep fighting, sweet angel! You have a mommy and daddy and big sister who love you so very much.

    I may be oceans away from you, here in Australia - but you have touched my heart and have shown me just how brave we can all be.

    Sending you and your family so much love,

    ~Allie
    from NSW, Australia

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  24. Dear sweet Bella Girl,

    Fight, fight, fight. We all love you. You can do it..again. Show everybody how strong you are.
    Sending you much love and good thoughts.
    I saw three butterflies today. And they always make me think of you. Fight you little angel, and feel the love we all send you,
    Paul, Heike and Liesel.

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  25. Baby Bella...
    I'm sorry you had a bad day...tomorrow will be better, just think, you have a whole world praying for you and your family. Get some rest...but don't forget that everyone is still here waiting for you to come out and play! Reading through your day today and hearing how tough it was, and listening to them use those words and phrases makes me think and remind you...THEY also said the world was flat...stay strong little one and let Him take care of you tonight...and tomorrow will be better!
    Hugs and Prayers in colorado!
    Amanda

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  26. Bella Darling,
    I am so sorry baby girl. I don't like hearing about you having these bad days. You need to pull out of it honey. I know how strong you are and I know you can get thru this. One day, one hour, one minute, one second at a time.

    It breaks my heart thinking of you in pain or any kind of distress. There is just so much love in this world directed towards YOU!! YOU have changed so many lives. I'm not the same person as I was 4 months ago before I learned about you. I'm a better person for knowing you. I think about you daily.

    I am a strong believer that God has a plan for each and every one of us. You are one of the strongest spirits God has. I have been thru major trials in my life that make me who I am today and I know for a FACT that this TRIAL in your life is going to be just that, a TRIAL! And you are going to be a stronger person for it. God works miracles. I am not only going to pray for you tonight and all day tomorrow but, I am going to fast for you as well all day tomorrow. I really believe that if I concentrate my energy and love and power on you ALL DAY, it will make that much more of a difference. I'm gonna give it all I got sister!! You are worth it. GOD BLESS YOU AND YOUR WONDERFUL FAMILY!!!!!

    Lots of Love,
    Amber, Craig, Malorie(2 1/2), Liam(9 mos.)
    The McLaughlin Family
    Moreno Valley, CA

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  27. Dera Bella,

    It's awful to have your back against the wall, but sometimes even walls fall.
    I am praying for the best for you to happen. Let tomorrow be a better day!
    Tim and Ang, I am sending you strenght to go through this difficult time.

    Thinking of you,
    Elena

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  28. dear bella

    we are all here for you, waiting.
    Take your time. We'll still be here.
    Helping your daddy and mommy through.
    We won't give up. Because we know YOU won't.

    sweet bella...
    we love you!

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  29. I'm so sorry, sweet girl. We are still praying for you here in SC!! You and your family have touched our lives in ways I can't even begin to describe.

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  30. Bellababy:
    I had to leave and come back because my heart is broken hearing how your day went, I just couldn't stop the tears and then it dawned on me. If your not crying why in the heck am I crying, you dear sweet child are a true fighter fighting a long cold war!
    You darling girl have the lord comforting you along this journey and we keep reminding him to stay with you. But I know this has to be really hard for your mommy and daddy.
    Keep fighting lil one because we are still sending wishes, prayers, and strength to you and your family.
    Please heavenly father lift this family up in their time of need. Give them the strength and determination to carry on for the good fight. Bella needs to be healed now father it is time.
    Amen!

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  31. Jack and Molly's NanaOctober 7, 2010 at 11:31 PM

    Hi, Pumpkin!
    I'm so sorry you had a bad day on Thursday. But you know what? This one's going to be better. As I was typing that last sentence, I was reminded of a song that the kids at my sister's preschool sing, "This is the day that the Lord has made; we will rejoice and be glad in it." Let's pray that He has heard the hundreds of prayers being said for you tonight, and allows you to respond positively to your treatments today. Your family and ALL of us out here in internet land are ready and eager to rejoice at some good news. Sending you all a warm hug from Costa Mesa; be strong!

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  32. Karen from Az, texas accent. (think sandy cheeks.. according to my friends (squirrel from spongebob in case ali it's a fan)

    Oh darling sweet sweeet bella, oh baby girl, lovely baby.. oh baby come on. Sweet baby fight it, fight it. Come back to us sweet baby come back, come back and fight with us. We're here sweet baby, come back you have so much unfinished in this world. Your gifts have yet to be fully recognized, YOU bella girl, YOU are needed and loved. And we love you, oh how we love you. Mommy and daddy and ali love you. Every night I pray and whisper to god, someone who I'd not talked to in a while before I met you. i tell him how much you mean to me, I ask him to guide and be with you. To help you heal. Oh baby :( if I could wrap my arms around you, touch you, take this from you I would. I wish I could take this for you. Sweet girl, sleep well, rest, and be strong. Little baby be strong.

    Don't give up, it's just the weight of the world when your hearts heavy I, I will lift it for you. Don't give up, because you want to be heard if silence keeps you. I, I will break it for you.
    Everybody wants to be understood, well I can hear you.
    Everybody wants to be loved.
    DON"T GIVE UP, BECAUSE YOU ARE LOVED. ( Josh groban, Don't give up you are loved.
    http://www.youtube.com/watch?v=I-G8IfjPAII (song)

    Another one I liked was hello world, for you tim. It's by lady antebellum and is just really pretty.

    http://www.youtube.com/watch?v=rlKK4Eu4EgQ

    You will heal, and one day you WILL Say "Yeah I was born with a rare skin condition but when I came home it went away"

    And it will, all of this will.

    Love, Karen.

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  33. We are praying and sending warm hugs your way...let the Lord carry you...whatever you can't handle, leave it to the Lord. So sorry to hear about today, but this strengthens my faith and does not set me back...I BELIEVE! Love you sweet Bella Doll,
    nicole b

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  34. Hi Sweet Bella~
    You are such a sweet little girl; you've charmed SO many people who have never even met you! You are beautiful, and SOOO loved. But sweet wouldn't be as delicious as it is without the salt too. Maybe it's time to pull out some of the fire and fight your Daddy has mentioned that you have too. It's ok to be mad when you hurt - sometimes it's even a good thing! Hang in there sweetie, you are working so hard to heal and my thoughts are right there with you in your little room, under your comfy blankets and fabulous socks and cute hats and soft stuffed-friends - that's where the healing needs to happen, Ok?
    sending SOOOO much love and support from Yakima, WA
    Ashley, and 14 month old Edie.

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  35. Hi Bella! Do you and Ali like the movie "Finding Nemo"? It is one of our family favorites. We often quote the movie when things are tough-"Just keep swimming!" Please tell your Dad and Mom that they may feel like their backs are against the wall but, God has their back - lean on him- and Just Keep Swimming! We are praying for you Sweetie!

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  36. I don't even know you, but you have crept into my heart and I think about you and your family constantly. I am praying so hard for you Bella. Be strong and get strong big girl - you CAN do it.

    Sending lots of love from South Africa.
    Linda

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  37. I am so sorry that things are getting difficult again. We are so praying and hoping for another turn around. We are 2 doors down and available if there is anything we caqn do for you.

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  38. Bella is so beautiful!! I heard about her through my ex-neighbor Tiffany Modica, whom I think maybe you know. Anyway, I was so touched by her story and your struggle to get her better. Know that we are thinking about her and hoping that our energy surrounds her and bolsters you up. Sometimes surrender is all you can do, and other times you have to fight as hard as ever. I wish all of you well.

    Janice Terzioglu

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  39. Dearest Bella. You are one very special girl. You have touched so many hearts, including mine. We are all rooting for you to get better. Be strong!

    Showering you with lots of love and prayers from the Philippines

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  40. Bella,

    So sorry today has not been such a good day for you.
    Wishing you a better day tomorrow, from Australia.

    Fran xo

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  41. Sweet Bella, my heart is just aching for you tonight. Be strong little one, one breath at a time. Strength and love to you and your family

    Shana xxx
    (Australia)

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  42. Dearest Bella, Tim, Ang & Ali,
    I have been reading your blog for a couple of months now. My heart sank tonight as i read about your day. Praying that this is just one of those '2 steps forward, 1 step back' weeks.
    I love seeing your socks of the day. Earlier this week when doing my sons dressings (he has the same EB as Bella), my husband put mittens on Joshua's feet instead of socks, we had the biggest laugh in a while, we even had tears in our eyes. I instantly thought of you with your socks!!
    I will be praying hard for all your beautiful family, keep strong.
    Kylie xx
    Sydney, Australia

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  43. Dear Bella,

    I hope this is just a bump in the road and that we soon get to hear that you are on firmer ground. I just wanted to share a small thing with you. Every night I tell my four-year old a story (that we make up as we go along). It's about a prince (named Philip after my son) and his two dragon friends. These two dragons have always been nameless - simply called the red dragon and the green dragon. Yesterday however we decided to name them - the red dragon is now named Bella after you - I wanted to let you know that half way across the world (in Sweden) each evening you are a part of our bedtime story.

    Blessings to you all

    Emma

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  44. Dear Bella
    I am 8 years old and I want you to
    get better .
    My name is also Bella, but Isabella.
    My Mum tells me how you are every morning.
    Please, Please PLease get well.
    My whole family want you to be better.
    Love Isabella.
    England

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  45. Sweet Bella,
    It's the morning here in UK and I'm praying harder for all of you to have a good night sleep and a wake up to a better day.
    Every Friday my son Martin complains about his day because he has rugby and he hates it; he has to learn so much from you!You are a fighter and you have the best coaches, your mum and dad.
    It's very latin ... but I send you a BIG,BIG KISS!
    Lots of love and prayers from this side of the ocean.
    Mariana,UK

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  46. Hello! I having been following Bella for a little while now, but have not commented. I have been checking in on her everyday lately and praying daily!I pray that today is a new day for you guys and that Bella can become better soon! I pray that God will give the doctors new wisdom! Thank you for sharing your journey, love ya Bella!

    Love and Prayers from Texas

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  47. Dear Bella,
    (Dad, please read this in a slight southern drawl ;))
    My name is Carrie and I am a stay-at-home mom to my little boy Jacob. I found your blog by way of little Jonah. I have kept up with your blog every morning. I have rejoiced when you have good days and prayed fervently when you have not-so-good days.
    My son, Jacob, was born two months premature. While he has had struggles throughout his little life, none have even come close to your daily fight with EB. There is a Bible verse that I have found comfort in during our struggles with Jacob's stomach and eating issues. It's from John 9:1-3, "As he (Jesus) went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?" "Neither this man nor his parents sinned", said Jesus, "but this happened so that the work of God will be displayed in his life". Bella, God's works have definitely been displayed in your life. One day you will say, "One day I was born with this rare skin condition, but when they brought me home from the hospital, it went away".

    Tim and Ang, here's a Bible verse for both of you as well. I hope it brings you some comfort. James 1:12 "Blessed is the man who perserveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him". Both of you are great advocates for sweet Bella. You all have definitely stood and passed the test!

    Bella, you will continue to be in my daily prayers. I'm praying for a much better day for you today. Keep fighting sweet girl!

    Love,
    Carrie (from Virginia)

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  48. Stormimg the heavens on your behalf Bella. Spent the afternoon making Disco party costumes for three of my granddaughters,after I came home from work caring for the sick grown up people. I am thinking of you and praying for you sweet baby Bella.Everyone loves you and know you are doing your very best to get well again so you can make great memories growing up with your Mummy,Daddy and big sister.Its ok little bella God is holding you in the Palm of his hand. its ok sweet babyxo

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  49. Ps I live way over in Australia where we have really funny animals like Koalas and Kangaroos,maybe one day you will visit!

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  50. Hi sweet Bella! Happy Friday! I heard you had a rough day yesterday... I'll be thinking extra good thoughts so that today will be better. I think it's really sweet of your dad to read you all our comments. You have a lot of people praying for you around the world and I KNOW that you haven't given up. Stay strong Bella, and let's show those silly doctors what you can do!

    Hugs and much love,
    ~ Pati :) from S.Florida

    P.S. I'm sipping my coffee while writing this and Mickey Mouse Clubhouse is in the background. I always think of you when my son watches it. Todays episode is about Goofy. I always wonder which is your favorite character. I'm a Daisy fan :)

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  51. Bella, oh sweetie this was not what I wanted to hear about you ever again. I've never met you, but I know that you have a special, special place in my heart. I'll pray extra hard for you, that you can get that back of yours away from that scary wall!

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  52. Hang in there Bella, you beautiful girl! You are so loved! The world is there for you to discover when you are well again!

    My heart goes out to you all in this hard times. I understand you must be so scared and so drained. I wish I could say a magic word that would change it all to the better. But the only thing I can do is to hope with all of my heart that tomorrow will be a better day.

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  53. Hi Bella

    Sending buckets of love to you on a beautiful spring day in Adelaide, Australia! Every single night for many months I have put my little ones to bed and hurried to the computer to find out how your day has been.
    Im sorry that you're not feeling too good today. Hopefully tomorrow will be the day you turn around and knock everyones socks right off!! With an amazing Daddy like yours and so many people holding you in their hearts anything is possible for you!
    You are one of the luckiest girls in the world to have a family who will fight the way that yours does for you!
    I am truly in awe of their strength and faith.

    Stay strong little princess

    Love and butterfly kisses

    Eleanoah
    xx

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  54. Hi Bella (And Tim and Ang and Ali)
    I watch you sleep and I wonder what marvelous dreams you must be watching. Butterflies, rainbows, hummingbirds and probably squirrels must be jumbled together with a background of gentle guitar music provided by your dad. I see you peeking at your family every so often and as you can see they NEVER leave you alone. So rest quiet, know you are loved and listen to God whispering lullabies in your ear. You will get better after todays bad day. You are such a strong fighter and this is just a bottom loop of the roller coaster and soon you will be swooping upwards again. Hugs to you and your family
    Laurie
    Minnesota

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  55. Dear Tim and Ang,

    I cannot even imagine how your chest must be heavy and your mind distressed. I can only offer my prayers for you. Just keep strong and confident that Bella will recover!

    Dear Ali,

    I just adore the pictures of you. You just look so happy and full of life. You are a beautiful girl and a caring old sister. Keep that light shinning. You are such a strength to your parents and little sister.

    Dear Sweet Sweet Bella,

    My heart aches for you but my faith in you (and in God) is solid. You will get better. God is just showing that it will not be a doctor, a drug, or a treatment that will improve your condition. It will be God! I truly believe in that.
    Just hang in there Sleeping Beauty.

    Praying for you and your wonderful family constantly.

    Carla, from Portugal

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  56. Hi Miss Bella,
    It was a seriously hard day at my house too. I have told you how my younger daughter & I do not always see "eye to eye" and how I am trying to be positive like your mom & dad and stay the course. I know it is hard for you right now Bella, but baby you need to fight hard! Listen to daddy's voice and let it help you heal! I know daddy, mommy & Ali and all the loving people who come here are praying for you to heal! Oh Miss Bella I saw a lovely butterfly dance across the lawn just yeterday and she so made me think of you and the miracle you are! I know you will say this - I just know it in my heart!
    "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away."

    Angelique, Tim & Ali I am praying so hard for Bella and the strength for you all to keep moving day by day! Ang if there is anything you need just text me!

    Prayers coming non-stop from NJ
    Tina

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  57. Dear Beautiful Bella: I am praying so so hard for you today baby girl. Please feel all the love that surrounds you every single day. Feel God's healing hands and his love.
    You are an amazing little girl and please get better so you can go play in the park with Ali and let your Daddy show you the cute little squirrels.
    Please take care Bella. We all love you so much. Lots of Love and Peace. Leah's Nana

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  58. Bella,

    Keep fighting and keep being strong! You have inspired so many people and we all believe in you. I'm sorry yesterday was so yucky and tough for you, and today is a new day with new possibilities. Just keep listening to the kind words of everyone who loves you and your family and let it start a chain of healing inside you. You are loved by thousands around the world.

    Stephanie
    Houston, TX

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  59. Bella,

    I know that this was just a blip in the road - keep fighting little one you have so many people to prove that you can do it and so many people's lives to touch.

    I meant to post this yesterday. I watch (or to be honest am addicted to) Glee. This past week was a show on the power of prayer/religion/is or isn't there a God. This line made me think of you.

    "God doesn't make mistakes. That's what I believe"

    Bella you are more perfect than anyone could imagine -

    Have a peaceful day
    Tamar in Boston

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  60. Lifting you all up in our thoughts and prayers.
    The Cooley family in Nebraska

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  61. Oh Bella,
    I know God is with you right now, He lives in you. Feel His Healing energy life force flow through you right now. Start with your hands, let it flow from your daddys hand to yours, feel it move up your arm and fill your whole body. .... Pause and just feel.... Feel Gods love, feel the worlds love, feel my love for you Bella.

    Ang, Tim & Ali, I am praying deeply for your family and sending you love and strength. My heart is with you.

    Angela O

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  62. Dear Bella,
    I have not left a comment on here yet but my son Owen sent you a butterfly that he colored and I sent you a letter with it. I have been with you since early summer. I read about you every morning to see how you are.And I think about you many times during the day. Your dads writing is great and I feel like so many other people who read about you, I feel like I really have become part of your world. Its strange but even though we have not met you we all feel like we know you. Please Bella, try to wake up, maybe you are not ready yet, but hopefully you will be ready soon. Hang in there pretty girl you can do it!!!
    I wish I had time to write more but I have to take my kids to school and then I go to work right after that. See you tomorrow morning!!
    Oh and by the way I AM NOT PERFECT EITHER!!! It's hard to say but now I said it too!!

    Lisa Gavigan
    Long Island, New York

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  63. Bella,
    My heart hurts reading your daddy's words. At the same time, I have hope. You are an amazing little girl that has overcome SO much already. I believe that you will overcome this obstacle. I believe God will heal your little body. I believe that the doctors will be shocked by your recovery and deem it a miracle. I believe that other EB patients will benefit greatly from your journey. I believe that you will go back home to California. I believe that some day you will look back and say "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away." I believe Bella. I believe.
    Kari Harman
    Minneapolis

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  64. Dear Bella,

    In our house, we wake up every morning, come downstairs and feed our animals and then the very next thing we do is read your update and pray for your recovery. I know you're working so hard little one and I know you're tired, but while you're resting, feel all the love that surrounds you, that surrounds your family and know that we're all praying for strength and courage and healing for you and for your family! We believe you can do this, that you still have a fighting spirit and a will to live.

    I have a little fighter too. Between the two of them, my daughter and her best friend have endured five open heart surgeries and ten heart catheterizations by the tender age of 3 1/2. I have seen them battle and struggle and I have heard the doctors say things no parent should hear, but I'm also delighted to say that both of them are running around, twirling around, healthy happy little girls. Miracles can and do happen, you just have to believe. Don't lose hope! I have faith that Bella can and will go home to say "I was born with this rare skin condition, but when they brought me home from the hospital, it went away!"

    Love,
    The Kurz Family
    Virginia

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  65. Jesus we pray in your name because there is POWER! in your name and we belive that there is POWER! in your NAME! Father God we lift this beautiful Bella up to you for healing. Father you KNOW all of her needs and we have FAITH that you will heal Bella.
    Lord we know you have been by Bella's side this whole time and we thank you and honor you Jesus for your faithfullness. Lord Bella needs a little more help right now, Father we ask that you stablize her BP, her fluids, her heart, her sweet skin. Father you are able to do this and we stand by in faith for your healing.Amen.

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  66. This is certainly not the news that i was hoping or expecting to hear. I am so sorry that you guys are having to go through this roller coaster, I can't image the emotional toll that this is taking on your whole family.

    As I've said before, I will NEVER give up on Bella and that has not changed one bit and it never will.

    Bella - Get better girl - that's an order!

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  67. Bella, Please tell your Dad that there is no way he could master my accent. It just ain't gonna happen. It would take total immersion into South Georgia for that to begin to happen!
    I am so sorry that you had such a yucky day. I am drinking my coffee and sending prayers from the deep south. Keep fighting, Bella. You can do this.

    Scottie Hudson
    Cairo, Ga

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  68. I am praying for God's VERY Best for Bella, whatever that may be and that God would be honored in all. Praying for strength for all as you wait on God! Blessings, Deb

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  69. Bella, you are a miracle girl. Nobody said miracles come easy! Keep fighting, ok? Rooting for you from down the street (and fully ignoring my Med Agents lecture!), Lisa

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  70. It's amazing to me how someone I don't even know can be in my thoughts every moment of every day. I am in tears for you guys right now. I can't imagine the sadness you are feeling. I love though how through everything you can still find something positive. About 4 years ago, my mom was diagnosed with cancer, 1 year to the day she was gone. I remember the days when the fact that the sun was shining was the only positive thing I could notice. We saw SO MANY miracles through that time. We have seen Bella pull through before and I pray that she does it again! Through this journey that I am living through you, and through Daylon, Tripp and Elle I have really learned to appreciate all the small moments in my world. I have 3 boys and I appreciate all the chaos and craziness they bring to my life. I'm grateful that they are healthy and wish that your child can be just as healthy. So even though I don't know you, I love your little girl. My boys know who she is and we pray for her everyday. Good luck today! I hope that a miracle happens for you this week.
    Memory
    Fort Worth, TX

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  71. Hello Bella,
    You don't know me, but my name is Vickie. I live in Atlanta, GA. I've been reading about how brave you are for about a month now. WOW, are you brave and strong little girl. You're an inspriation to me, as is the rest of your family. My son, Will, and I pray for you every night. Will has some special needs also so he knows what it's like to be in the hospital alot. We're sorry you've had to go through this, but if anyone can beat this, you can. We just know it. Your family loves you so much and you've got people all over the world praying for you to get better. You hang tough, pretty girl. May the angels in Heaven watch over you and I know God's got you in his hands. Your story has changed me. Your dad is an amazingly strong man and he's also been a true inspiration. I'm saying extra prayers for you today, sweet girl. Praying for your mom, dad and sister too. May God Bless.
    Vickie Smith

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  72. Ok Bella,

    We need a little action (positive action) from you today. You can do it! Go ahead and squeeze some fingers today and play some peak a boo with your family. You can do it! I know you still have a fire burning under all you are going through each day. Lets see thst blaze come through today. You can do it! Keep fighting and feel the love of everyone around you.

    Leslie, Louisville

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  73. Bella, Continue to be strong and prove all your doctors wrong! I'm sorry you had a bad day, but today is a new day and we all know how you like to rally! Praying and praying!

    Darci and Jack (16 months)
    Pittsburg, KS

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  74. Dearest Bella, that is really too bad that yesterday was so rough. But we all have those kind of days and then things get better. You have to pull through this, keep fighting like you have been. You have a lot of work to do here on earth, I just know it and feel it. You will get better!! You will go home with your family and be celebrating the holidys with them. You daddy is so strong and he is making sure we all keep praying for you. I'm praying hard and I'm begging God to help you feel better so that you can serve him for many years. I haven't met you but as I write this I have tears in my eyes and want you to know that I love you. You have so many people that love you and want you to get better. Kisses and hugs to a beautiful little pumpkin. Prayers Tim to you and your family that you stay strong and God Bless. KD Minnesota

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  75. Father God- We lift Bella up to you today Lord because YOU are the Great Physician. Only YOU know exactly what she needs and we pray that her needs will be met through you. We ask that you bring PEACE and COMFORT to her family that they would be anxious in nothing Lord and that they would cling to you. And that they would trust in your mighty and awesome healing power!! We praise you Father, in ALL things. In the mighty name of Jesus....AMEN.

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  76. hi Bella and fam. Just wanted to let you know we made a donation for Team Bella @ the Choc Walk via Lacy Jane's page. You all are in our thoughts and prayers. Have a good Friday! Russ F. & fam.

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  77. Gma Alice in CaliforniaOctober 8, 2010 at 6:45 AM

    Precious Bella: I am so sorry to hear you had such a tough day and night. I know that our loving Father has you in his arms and I pray that he continues to uphold you and your wonderful Daddy, Mommy and big Sissy. You are a fighter and I know you must be tired of all this but baby KEEP UP THE GOOD FIGHT. God has wonderful plans for you and we pray that one day we will be blessed to see the awesome things that are reserved for Bella. We have been blessed with 5 beautiful grandkids and your journey is something I share with them. We all take our health and everyday routines so for granted and YOU our precious baby girl have opened the eyes of so many to appreciate all we truly have. I pray for you and your family all day and will continue to do so. YOU ARE IN THE HANDS OF THE MIGHTY PHYSICIAN and HE HAS THE POWER TO WORK A MIRACLE. I believe we will see this miracle happen.

    Love and hugs to you all :) Gma Alice

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  78. Dear sweet Bella,
    I've been checking on you every morning for many months now. You've been through so much and have been so strong. God is with you Bella and with your family through ALL of this. Several years ago I was in the ICU fighting for my life. When I awoke, several Bible verses ran through my head.... this one in particular helped and comforted me....
    So do not fear, for I am with you;
    do not be dismayed, for I am your God.
    I will strengthen you and help you;
    I will uphold you with my righteous right hand. Isaiah 41:10
    Praying that you will feel God's strength within you. You are loved. Your precious family is loved, by people all over the world but most of all by God.

    Amazing HEALER God, surround this precious child with your strength, mercy and healing. Send your WISDOM to the doctors and her family so that they may choose the best paths for treatments. Lord, you can do anything.... please heal this baby so that your glory can be shown to the hospital folks in MN and to all who hear her story. Amen.

    Love to you all,
    Jaymie in VA

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  79. Sending prayers, love and strength to you all!

    From our family to yours,
    Laurie, Bob, Ethan and Maria

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  80. Dear Sweet Bella,

    As I watched my son Sidney run around our house last night with laughter, I thought of you confined to your hospital bed and wished, and hoped, and *visualized* you doing the same with Ali in the near future. I know we haven't met in person, but you mean the world to my family. When I see photos of you online, I feel like I'm there and I want to hold your hand, kiss your rosy cheeks, and give your parents a hug of support. They love you SO much, as do the rest of us who watch your journey from afar. PLEASE keep fighting. God is with you to help. Although your recovery isn't going as smoothly as your parents expected it to, you WILL be well. (I BELIEVE!) Until then, we'll be thinking about you and praying for healthier, happier days ahead.

    Bonnie in OH

    P.S. What wonderful comments from around the world... Sarah from Colorado's butterfly poem, Emma and Philip's red dragon, 8-year-old Isabella from England... You are SO loved!

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  81. Precious Miss Bella,

    We all love you so much - our days revolve around you. We're there with you - holding your hand. Please squeeze back!

    Love,
    Aunt Mary

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  82. Bella,
    Hang in there kiddo. You have a lot of folks out there who are rooting for you. Every morning - at work mind you :) - I check to see how you are doing. I know you are hurting, I know you are scared but you are so loved!

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  83. i (we) contine to pray for you guys. keep fighting bella, you can do this. you have touched so many people and we are all behind you..

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  84. Please Bella, we all still have so much to learn from you. Be proud, you have taught us so much already in your short life! All of us are tools through which God works his ways, but you, little one, must be His favorite. How could you not be. Please feel the love for you - let it shower down upon you, from God above, and from all who are following your journey with so much hope and love.

    Tim, Sissy and Ali - you are pillars of strength, (and joy, precious little Ali). I remember from long ago, probably somehow connected with Steve and his health struggles, a phrase you have heard I'm sure - "Let go and Let God". You have done this consistently and courageously, even though it's hard for us control freaks huh Tim? Probably because of the responsibility felt to do absolutely everything humanly possible to make things right. From early on in this saga, it's been so obvious that you put Bella in God's care. I pray there are still many chapters to come in the next book about Bella, with a happy ending. Hugs to give you strength, Terri

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  85. Lifting all of you up in prayers. I pray that Bella will start feeling better soon. That her blood pressure and temperature will regulate and that she will start squeezing that hand of yours. I cannot imagine how difficult this is for all of you, please know how much you are prayed for. I pray for healing, I pray for discernment for the doctors, I pray for strenght for all of you.

    These verses bring me great encouragement and I pray it does the same for you:

    "Have I not commanded you? Be strong and courageous. Do not be terrified, do not be discouraged, for the Lord your God will be with you wherever you go." Joshua 1:9

    "Therefore I tell you, whatever you ask for in prayer, believe that you have received it and it will be yours." Mark 11:24

    ~Danna

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  86. Oh, Bella - Bella - Bella...

    We sure do love you, little lamb. We who have never met you, but who feel like you're part of our families.

    I hope your daddy knows the song "There Is a Balm in Gilead" because that is what is in my head right now. The simple tune of the African American spiritual is so soothing, and I would like for him to sing or hum that for you. "There is a balm in Gilead to make the wounded whole." Your family is experiencing "wounds" on several levels, but we know the One who can heal all those.

    Praying fervently that you all will be soothed and comforted by the balm in Gilead.

    With great affection and praying for healing,

    Susan
    A friend in NC

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  87. Writing from Orange County to tell you that I check on Bella every morning before starting my day. I am sorry she had a rough day yesterday. I hope and pray that today is better. I love that someone gave you winter close for Ali to wear, so you don't have to worry about going shopping for things she'll never wear again.

    I pray that Bella does a quick turn-around and starts waking up and responding more.

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  88. Dear Sweet Bella,
    We are so sorry to hear that you are having such a difficult time. You have had many, and you have bounced back each time. Please bounce back again.
    We love you and miss you, and are praying that you get well soon. You have touched the hearts of people all over the world. You have taught the medical community new ways to care for a baby with EB and a BMT. You have taught all of your loving followers many lessons about strength, and faith and trust in God's goodness.
    We continue to pray for you and your loving and strong Mom, Dad, and big sister, Ali.
    Sending powerful love and prayers,
    Nanny Sheila and Grandpa Ralph

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  89. I'll be praying for a better day - for EVERYONE involved.

    Hugs and snuggles and prayers and smiles from TX.

    Lauren.

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  90. Tim- I am sorry to read about Bella's sudden decline....I have been there...watching a baby with a very low temp, collapsing lung, and REALLY acidotic..it is very difficult...I wish I had the magic pill to make her better. Hopefully the doctors figure it out soon! We are praying for you and little Bella.

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  91. For mom and dad, God will see you to the other side of weariness. We gain strength from our connection to God. Today I pray for protection of your minds from negative thoughts. I pray for healing for sweet Bella. I have been following and praying for weeks now. God brought me here through Bella. Sweet angel. Rest Bella and heal. We're praying. Traci Alabama

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  92. Sweet Bella!
    I am so sorry to hear that you had such a bum day. But I know you are such a fighter and you will "wow" us again just like you've done before. Keep going hunny!! Show the docs once again that you aren't done here and that you will be here for a long long long time. I won't lie, the post today hurt deep inside my soul. I normally wait to update Grant when I see him, but I had to call him and read some excerpts from the blog to him over the phone. I wanted to make sure he was praying for you and your fam all day today! I wanted to make sure he knew so that he could send your daddy a much needed "friend" text. I even called my Mom and updated her and asked to pray today, right now. I am holding you so close to my heart. I wish there was more I could do. I wish, just as your Dad and so many of your world wide friends, that I could somehow take away some of your pain. I think about you everyday and can't wait for you to return home. Sending you buckets of love and strength. Keep fighting Bella, you can do this!!
    ALL our love,
    The Vanderbooms

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  93. Sweet Bella,
    I was so sad to read that you are not feeling well. Your amazing family is so special. It amazes me daily that your dad shares so eloquently the ups and downs of your journey. I am praying for you and your family.

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  94. Dear Bella,

    You are one tough little girl. I am sorry it has been so rough for you lately and I hope things turn around soon. Your dad has been sharing your story with me and I have to care so much for you and your family.

    Thinking of you and praying that you feel better soon,
    Love,
    Mare

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  95. Hello Bella! I am praying for you today like always. You are such a special gift from God, and he is watching over you and guiding your parents and your doctors. His power is in control! Today I am praying for your blood pressure and your temperature and your lungs and kidneys and liver, every part of you that needs prayers. Stay strong Bella, you WILL be healed.

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  96. Sweet Bella,
    You are an inspiration to so many. What a tough and brave little girl you are! I anxiously wait your update every morning and am rooting for you. Stay strong. I am praying for God to heal you completely, strength for your parents and sister and wisdom for the doctors and nurses.

    Praying in S.C.,
    Erin

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  97. Bella,
    You must remain strong. This, right now is simply a speed bump to recovery. You are surrounded by an amazing team and are held by an amazing family. You simply could not have chosen to land anywhere better than where you are. When it is hard to breath allow your family to breath for you, your heart, allow those surrounding you to beat for you. You are not alone in this battle and there are times where you simply must rely on your team when you are not feeling well.

    I want to thank you for being an inspiration to me and the medical community. You have made a difference and validate why people enter into the medical field. You have changed lives, you have made a difference and some day you will tell the world that you once had a skin condition but it is now gone.

    Tim, Ali and Angelic, always remember you are loved beyond words.

    Jon, Scottsdale.

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  98. Hi Bella! I've been reading about you for some time now and today I decided to write to you. You are such a cute, sweet little angel...and so is your sister Ali. You have such wonderful, loving parents Bella. They are right beside you, as you know, and will do anything for you. Did you know that you have people all over the world praying for you and reading about how you are each day? Yes, of course you do, cause your daddy reads the messages to you everyday! We all love you Bella, and we all pray for you to get well very soon. Rita

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  99. Bella...Sweet little one! I am praying very hard for you today. Many healing thoughts. Continue fighting! Sending you love to keep you warm. Can you feel it? xoxox

    Denise WI

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  100. Dear Tim,

    My name is Patrícia Albuquerque and I’ve been following Bella’s story from Lisbon, Portugal. I’m a mother of two beautiful boys (Gonçalo – age 6, and Diogo – 20 months old).

    Despite of receiving everyday your challenge to send my comments to you, the truth is that I haven’t commented your blog yet. I’ve been planning to, of course, but the will to find the right words and the difficulties in writing in a different language have made me constantly postponing my comment.

    However, while reading today’s morning your last post, I realized that I couldn’t wait anymore to write to you.

    Bella’s story and the way your family has been dealing with it has taught me so much and has touch me in such a deep way, specially in what concerns to dealing with adversity and how we can let God operate in us and in facts during the hole process. I really admire the way you’ve been able to keep your faith so strong, not turning your back to God, instead of being mad at Him and keeping Him out of the scene (I can clearly see myself doing that, believe it!).

    I read your blog every morning when I arrive to work. That’s really the first thing I do before starting my work, and is with a mix of anxiety and hope, that Bella has had a good day the day before, that I click in your blog link every morning.

    Today I felt so incredibly sad and worried and I just realized how deeply involved I am with Bella and all of your family, despite being so far away from you and not knowing you personally. What I read this morning made me feel physically sick and it completely transformed my day.

    I’ve been praying so much for sweet Bella’s recovery, and I’ve been so pleased and happy every time Bella surprises us all (specially her doctors!) by getting better and overcoming another obstacle everyday!

    I’ll continue my prayers for your pretty little girl and for the rest of the family, asking God not only to shows us all how He can turn the course of things even against all odds (as He’s shown us in this particular case so many times), but also to give you and all your family the strength and constantly renewed faith to walk this dark tunnel until you can finally get to the other side, go home and cry out loud that "Yeah, my daughter was born with this rare skin condition, but when I brought her home from the hospital, it went away."

    Little baby Bella, please feel our love, our positive energy and all the prayers we are sending God in your behalf! I think about you so many times, not only when I’m praying, but also when I look at my two boys (which are pretty handsome, I can assure you that! Maybe one day you’ll be pen friends, who knows?) and I just whish you could be able to get out of that hospital!

    You’re such a beautiful butterfly and I admire and trust your strength so much that I’m really confident that sooner or later you will spread your wings, get rid of all those tubes and hug your parents and sister so tight that you’ll take their breath away!

    Tim, thank you so much for sharing your life, your family, your faith and your relationship with God, for it has really made me untangling many knots that were messing up with the way I was living my faith!

    I just hope, you can understand my message correctly and please don’t pay attention to the (probably many) mistakes in my English writing!

    All the best for you all!

    Patrícia

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  101. Sweet Bella,
    Corynn's great great grandma passed away last night, at the age of 103. The reason I am telling you this is because I have asked her to help God take care of you and help you get better. You see, she was an amazing woman who put her life in the Lord's hands and trusted Him unconditionally. And while I am so so very sad to read about how sick you are right now, I have faith that you will get better. You deserve the world sweet girl. Please keep fighting, we love you.
    Love, Amanda, Bryce and Corynn Schauer

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  102. Tim, I posted last night and checked this morning to remember what I wrote, and I can't find it....I hope you have been getting my posts. Wish I could remember what I said.....continued prayers and much strength to you today.

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  103. Little Bella,
    We bow our heads to lift your name
    Around the world we pray the same.
    Feel the warmth and love we send
    that once again, God will mend.

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  104. I'm sorry to hear that things have been so rough over the past couple days for your family. We continue to pray for Bella everyday, and can't wait to see her here at the RMH playing. I know that I'm obviously not a doctor, but if there's one thing I've learned being on this BMT rollercoaster, it's trust in your kid and trust in God and things will work out. TWO months ago I signed a paper saying that they could do a special autopsy on Daylon's brain, I signed a DNR...now look at him. :) God has a plan for all of us.
    As far as the sleepiness, I'm sure she feels like junk and doesn't want to be up playing. As we speak, I have Caleb in the other room, who has a bad case of the flu and he's sleeping in his bed at 11am. When he's awake he has no energy for anything but laying there watching tv. Bella probably feels 50 times worse than Caleb and she's a baby. I thought I should let you know too, that Daylon sleeps A LOT still. Like maybe 18 hours a day. When he's awake he doesn't do much. I have a good feeling about Bella. I think she'll surprise them all. :)
    Bella,
    Sweet girl, you're such a strong child. You're giving people all around the world something to pray for, and are causing them to get on their knees. That's such a great honor. You're are so lucky to be blessed with wonderful parents and a sweet big sister who love you dearly. When you get out of the hospital I want to take pictures of you and Daylon together to give to the hospital so everyone there can remember the little miracle babies. Our family is praying for you several times a day (even the twins remember you in their prayers!)! Love, The Edlings

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  105. I'm sorry your day was such a crummy one, Bella. You are so strong and have fought so hard up to this point. I pray that all the prayers and energy coming your way will invigorate you and your daddy, mommy and Ali. There are so many people thinking about you and lifting you up in prayer. We span so many time zones, I bet there isn't a moment that passes that someone isn't sending out a good thought or prayer. I know I think about you all day. And last night, after reading your daddy's post, I had a dream about you - you were all better and out of the hospital. I'll keep that image in my head throughout the day. Be well, little one.

    -Molly
    Chapman '07

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  106. Dearest Bella, Tim, Angelique and Ali…
    I follow your story daily and pray to Our Father in heaven on your behalf. Today I need to finally come out and talk to you all as well, so that you may know how much you are all loved and prayed for every day, from all over this country and the world.

    I hurt that you had such a bad day yesterday and am praying very hard that today God will give you a better one. Bella, I believe that GOD is speaking to you, whispering softly in your ear daily while you rest, and HE is the one that is giving you all of your glorious, AMAZING strength to deal with all of your pain. Don’t give up sweat Bella. Listen to Him and listen to your Mommy, Daddy and Ali. Gain physical strength while you rest, so that you may wake up and say: "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away."
    God is the divine physician and anything is possible in Him. We will all keep praying.

    In the mean time, remember to Praise God in this storm, He will deliver you and lift you up when you are down. He will give you all strength. In Him alone is the Glory.

    With the love of Christ,
    Beth (in South Dakota, grandma to two EB grandsons)

    I leave you with these lyrics …

    Praise you in this storm
    ------Casting Crowns
    words by Mark Hall/music by Mark Hall and Bernie Herms

    I was sure by now,God, that You would have reached down
    and wiped our tears away,
    stepped in and saved the day.
    But once again, I say amen
    and it's still raining
    as the thunder rolls
    I barely hear You whisper through the rain,
    "I'm with you"
    and as Your mercy falls
    I raise my hands and praise
    the God who gives and takes away.

    Chorus:
    And I'll praise you in this storm
    and I will lift my hands
    for You are who You are
    no matter where I am
    and every tear I've cried
    You hold in your hand
    You never left my side
    and though my heart is torn
    I will praise You in this storm

    I remember when I stumbled in the wind
    You heard my cry to You
    and raised me up again
    my strength is almost gone how can I carry on
    if I can't find You
    and as the thunder rolls
    I barely hear You whisper through the rain
    "I'm with you"
    and as Your mercy falls
    I raise my hands and praise
    the God who gives and takes away

    Chorus

    I lift my eyes onto the hills
    where does my help come from?
    My help comes from the Lord, the maker of heaven and earth
    I lift my eyes onto the hills
    where does my help come from?
    My help comes from the Lord, the maker of heaven and earth

    Chorus

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  107. Dear Lord, I pray that you touch sweet Bella's fingertips to the very tip of her feet and everywhere in between. I ask that you make your presence known in Bella and in that hospital bed. Show them, Lord, that you have not given up yet. In Jesus name we all fervently pray, Amen.
    Praying fervently, as I have throughout this journey, in Central Arkansas

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  108. Dear Baby Bella,

    This is my very first visit to your site to peak in on you - and wow, it didn't take me long to learn that even though you are having a rough go of it with this heinous, cruel condition you have, and all that you are enduring, you are supremely blessed with your loving family - including your very eloquent, strong faith-filled father! What a blessing - each of you is a beautiful gift to the other. I will pray, both for a complete healing for you, and for your family to feel deeply the power of family, friends and strangers alike, united in prayer for strength, endurance and love.

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  109. Dearest Bella, Tim, Angelique and Ali…
    I follow your story daily and pray to Our Father in heaven on your behalf. Today I need to finally come out and talk to you all as well, so that you know how much you are all loved and prayed for every day, from all over the country and the world, South Dakota too.

    I hurt that you had such a bad day yesterday and am praying very hard that today and going forward, God will give you a better ones. Bella, I believe that GOD is speaking to you, whispering softly in your ear daily while you rest, and HE is the one that is giving you all of your glorious, AMAZING strength to deal with all of your pain. Don’t give up sweat Bella. Listen to Him and listen to your Mommy, Daddy and Ali. Gain physical strength while you rest, so that you may wake up and say: "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away."
    God is the divine physician and anything is possible in Him. We will all keep praying.

    In the mean time, remember to Praise God in this storm, He will deliver you and lift you up when you are down. In Him alone is the Glory.

    With the love of Christ,
    Beth (in South Dakota, grandma to two EB grandsons)

    I leave you with these lyrics …

    http://www.sing365.com/music/lyric.nsf/praise-you-in-this-storm-lyrics-casting-crowns/1299620f9241aa074825707000090a78

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  110. Sorry for the double post! My computer said the post was too long the first time and I didn't think it posted! Oh well, you are doubly blessed and prayed for today. Beth

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  111. Snif! My sweet Bella, I can't stop crying, I know you don't know me, but I've been following your blog for quite some time now and I feel like we're very close, that I've known you for a very long, long time. I care for you so much that it hurts deep in my heart when I read that you're not doing well. I wish I could cure you with just a snap of my fingers. Please Bella don't give up, we've had many ups and downs but we have managed to improve. I pray that our Father will help you get through this, that you will do better today and every day after this. We love you and we'll get through this. I have faith that God will listen to our prayers and heal you. Come on Bella wake up! Please, please!!

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  112. Tim - when I first read your blog today...I couldnt read. I skimmed got the bits and pieces and wrote my comment for Bella. What I did get from it left me sad and I didnt want to "deal" with it. Then it hit me. You, Ang, Ali and Bella "deal" with it every day. You dont get to skim and get the highlights. So I went back and read it. I owed it to all of you. You see when you become scared...I become scared. When I was done reading I went and grabbed Clara and just cried and cried on her little shoulder begging God to help Bella. The tears still fill my eyes as I wriet. But I am digging deep and grabbing hold of hope once more. I still have hope for Bella and I still am unwilling to give up. Praying for a better day today.

    Denise WI

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  113. Continued prayers for your entire family!!! '

    Dear Heavenly Father,

    I come to you right now on behalf of the Ringgold's, Lord you know the entire situation, You know all about Bella and everything going on in her little body. You know what dad, mom and Ali are going through both physically and emotionally. LOrd I pray that they feel YOUR presence on this roller coaster ride that they are on. We come EXPECTING A MIRACLE, for the entire family. Lord, wrap your arms around them, let them feel YOUR presence like never before. Let them know beyond a shadow of a doubt, that you are holding them in the palm of you loving hands! In Jesus' precious, mighty name I ask these thing. AMEN

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  114. Man O Man, you are one AMAZING daddy!! I seriously don't know how you and Angelique are still standing, much less singing praises for the "little" things. You guys are truly an inspiration to me and to so many others. My heart BREAKS reading this... but I know you know that God has an answer and that your little girl has ALREADY changed lives across the world. People across the world get a hang-nail, or a blister from a new shoe- and think of your daughter and what strong, resilient little girl she is. And when they're frustrated with "normal parenting" issues- they think of you and Angelique... and then think, "Hey, maybe life is not SO bad," and "Maybe I should count my blessings." How amazing to be touching so many lives across the world. I love you guys.

    Bella...
    O sweet, sweet Bella. Your Mommy, Daddy and big Sister love you SO much... and you also have a whole world full of people who love and ADORE you... and have never even met you. And you know the Big Man upstairs (I know you know Him, you're one of his angels)... He loves you the most. And He knows exactly what your life is going to entail. He's not telling your Mommy and Daddy, though, because it's something ONLY HE is supposed to know. Your Mommy and Daddy's job is to love you so much and spoil you and take really really good care of you- and boy, Bella.... if you could see how great of a job they are doing right now while you're not feeling well, you would be O SO PROUD. I know that I'm really proud of them. But I am also REALLY proud of you, too. You might think that you are laying in that hospital bed fighting for your sweet little life... but you're not only fighting for YOUR life... you're fighting for the lives of ALL the other EB children in the world. My baby boy, Tripp... he has EB, too... and one day you will meet each other- but I want you to know that I am forever grateful to you for what you are doing for my son. If it weren't for brave and strong kids like you- Tripp would never even know if he had a chance for a better life or not. YOU are giving him that CHANCE. No matter what happens or what the outcome will be- YOU are changing LIVES. Bella... We are praying for you each and every day... You're the strongest little woman I know. Keeping fighting, sweetheart... and one day, I'm gonna give you the biggest bear hug you've EVER had. I love you so much!

    God Bless all of you,
    Courtney and Tripp Roth

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  115. I only started reading about Bella's journey in July so for about a week now I have been going back and reading about her from the begining. It breaks my heart that she is going through what she is. But as I was reading the post today, a song kept popping into my head and so I went on google and decided to copy the song and paste it onto here so you could read/sing it to Bella. It is by Allison Krauss.

    I don't know about tomorrow, I just live from day to day;
    I don't borrow from it's sunshine,
    For it's skies may turn to gray.
    I don't worry o'er the future, For I know what Jesus said;
    And today I'll walk beside Him, For He knows what lies ahead

    (chorus)
    Many things about tomorrow I don't seem to understand;
    But I know who holds tomorrow, and I know who holds my hand

    Ev'ry step is getting brighter
    As the golden stairs I climb; ev'ry burden's getting lighter,
    Ev'ry cloud is silver-lined.
    There the sun is always shining,
    There no tear will dim the eye;
    At the ending of the rainbow, Where the mountains touch the sky.

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  116. Hang in there, Kiddo! So many people are rooting for you from places you need to visit someday.

    Wishing you only the best, and trying to "turbo charge" my prayers during this rough patch -

    Angela Ulrich
    Dublin, Ohio

    PS - Great Halloween picture, Ali!

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  117. This comment has been removed by the author.

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  118. Dear Bella,
    You are an amazing little girl and so beautiful. I'm so sorry you were born with this horrible disease. Just remember the Bible says Jehovah God promises that soon there will come a time he will cause pain and suffering to cease for all mankind.(Revelation 21:3,4) Isaiah gives us a glimpe of what the earth will be like when that time comes (Isaiah 11:6-9) A time of peace and no more heartbreak, even the animals will live in harmony with humans. Just think, Bella, you can play with a lion or tiger if you want to! God's Word is faithful and true and what he purposes will come to be. You are loved by so many people, Bella. May God's comfort and grace be with you and your family.

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  119. Im not sure what to say that hasnt already been said by all the people you have thinking about and praying for Bella every day. As always, my thoughts and prayers are with you all also. Im going to borrow your words and send them with all the positive vibes I can - One day Bella, you WILL look back and say, "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away."

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  120. Dear bella

    Your mom,dad and sister waiting for you to come out of this dark tunnel..Come on bella whole world is rooting for you.. praying for you as always..

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  121. Bella...I was up late last night and was probably one of the first to read your daddy's post. I went to bed with a heavy heart knowing you had such a bad day and how worried your mommy and daddy are for you. But I keep remembering how everyone had given Daylon such a poor prognosis and now he's out of 5D and home with his family. I know you can do it too.

    I saw 3 butterflies at the park this morning. And yesterday my son came home with a butterfly he made in preschool. You're on my mind a thousand times a day Bella.

    One day you WILL look back and say, "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away."

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  122. Dear Sweet Bella,
    I cannot imagine how exhausted you must be, but I know that God is giving you strength for a reason...He wants you to one day say: "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away."
    All our love and prayers,
    The Gleason's

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  123. Bella I hope you have a peaceful day today and feel God watching over you. I wish this for your family as well. You all are in my thought and prayers.

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  124. Sweet baby Bella --

    I thought of you yesterday afternoon as I watched 3 delicate butterflies "dance" around some flowers when I was outside.

    May God continue to give you and your family strength during this difficult time.

    I will continue to lift you and your family in prayer.

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  125. I write to you as one of your faithfully (silent) blog readers. I haven't commented yet, mainly because I feel that the words that I do have aren't adequate enough to shunt your pain, or bring you happiness, or make Bella well. What I will say is that you are an amazing family with a child that has an amazing spirit and will to live. Many a time, I am inspired by your perserverance as a family in my daily life as I care for my own child that has JEB. You have provided a constant positive example for ALL people, let alone helped to pioneer such an amazing break-through treatment for EB-THAT is so admirable. I can only imagine how difficult this is for you, and how tumultuous life has been for Bella and your family. Wishing you many happy endings to days that don't always start out right. Thinking of you and your family during this VERY difficult time, and THANKING you for all that you have to offer the EB community, and humanity in general. Knowing how much it hurts to see your child in pain and giving you strength to try and see the bigger picture, when Bella finally does come home and say that she once had EB, but now it's gone. Sending you all big hugs,

    Denise, Steve, Ryan & Emmy Summers
    Westborough, MA,
    www.happychapryan.com

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  126. Good Morning Sweet Bella,

    I hope that you are resting peacefully today. I am so sorry I have not written you this week, but I want you to know that even if i don't write you, we are all thinking and praying for you each day. I read your Daddy's post late last night. I know you are tired sweet baby girl, but keep fighting. I know that when your Daddy reads our letters to you, you hear him. So with that being said I want to tell you THANK YOU. THANK YOU for being so strong, for teaching me a 36 year old mom so much about life. I love you for that and will always be grateful for meeting you and your family. I have a playlist of music that I named Bella on my computer at work. It is comprised of various songs, that are soft and sweet just like you. I listen to it all day long in my office and think of you. Your daycare buddies are missing you and Ali, they have made you some awesome butterflies to add to your room. I am sending a special package this weekend for you so keep your eye out for it. You have accomplished so much and I know the Lord has great things planned for you. We are with you Bella always and forever, how could we not be. You have a beautiful smile that lights up a room. I can't wait until you are back in California shinning that smile for all of us to see. Rest today sweet baby girl, in know you are in God's loving hands.

    Peace & Love,

    The Davidson's

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  127. I never know what to say here, so I land up not saying anything.

    Life is not easy, and just as you think you have one battle won, another crops up to take its place.

    Keep fighting, Bella. You're a strong little girl, and your mommy and daddy and sister love you so much. Hang in there, all of you.

    Hoping for better days and no more scary phone calls.

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  128. Ok Miss Bella, I go to scrapbooking class last night and then to a client's this morning before coming to read about your yesterday. I did expect you to turn this corner. I have expected you to turn another corner. The corner to a really healthy Bella. Yes it is warm outside today - 85+ degrees. You should be better and be outside enjoying this warm fall weather that I am viewing from my office desk outside of the window.
    God here is my request - please complete the plan that you have for Miss Bella's life. Her parents and sister would like for her to be healthy and come home. And I would like that for her also. Yet I do not know that plans you have for her life. Whatever they include thank you that I could be a part of your plan for Miss Bella's life. Love You Lord.
    sg - KS

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  129. Oh sweet, sweet Bella!
    I have not given up hope on you, little girl! My prayers are storming the skies, which I'm hoping make rainbows and sunshine!
    You have changed the lives of LOTS of people out here and we are forever grateful.
    Blessings,
    Amy

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  130. Bella,
    Don't give up baby girl! You have a loving family just waiting to take you home from the hospital...soon! Keep on fighting.

    You are amazing and I can't wait to see the miracle that God has in your future!

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  131. Lynne, Bob, Jack and BenOctober 8, 2010 at 11:12 AM

    Bella - We love you baby girl. We know it's hard, scary and uncertain right now. But we also know you, and you are one tough chick. Keep fighting. Breath, heal and take in the love around you. We are all out here, praying, sending energy and lifting you up -- you, and your mommy, your daddy and your sister. We are so inspired by your family, who noticed all the little miracles today. And that's the stuff that creates the big miracles.

    One day you will look back and say, "Yeah, I was born with this rare skin condition . . . but I kicked its butt!!"

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  132. The Peace of Wild Things

    When despair for the world grows in me
    and I wake in the night at the least sound
    in fear of what my life and my children's lives may be,
    I go and lie down where the wood drake
    nests in his beauty on the water, and the great heron feeds.
    I come into the peace of wild things
    who do not tax their lives with forethought
    of grief. I come into the presence of still water.
    And I feel above me the day-blind stars
    waiting with their light. For a time
    I rest in the grace of the world, and am free.

    -Wendell Berry

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  133. Bella,


    I check the blog everyday to hear about your progress! And I can't stop myself from thinking about you as I go to bed at night. We were at Children's in the NICU with my baby for two weeks, and it was the hardest 2 weeks of my life. The ups & downs are emotionally draining. But when you are able to say "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away." it will all be worth it!
    Hugs from Colorado!
    Cathryn

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  134. this is the first time i have read your blog and i am so sorry this is happening to you. i can't imagine what you all are going through. i will be praying for you .

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  135. South Africa ... Austrailia ... Portugal ... 8 yr olds from the UK, almost every state from coast to coast of the USA!! Bella, you and your family have touched so many. PLEASE let it be God's will that our prayers touch your heart and soul. I have never in my life seen such an overwhelming confirmation of how people can come together as one and wish for a change. You have restored my faith in humanity. And God. Thank you so much for that. I truly believe that you and your family have sent a new wave around the world, using the internet for something so good, instead of the ugly and otherwise selfish things most people use it for. Lets hope it is a trend that continues. You are fighting so hard, and bad days are allowed. But as someone said before me, now that you have the bad day over with. lets hope that this weekend involves a turn around for the better. I know you have been fighting so hard, please keep it up. You are such a strong little lady ... much stronger than the biggest tallest strongest man or woman i have ever met. there is SOOO much love surrounding you. Just know in your heart that we ALL love you and you CAN do it.
    TIM & ANG ... I cannot imagine what you have been thru and the fear you must be feeling. You are the most wonderful parents that have ever existed. Know that you have made the right choice and done everything and then some to give your children the best possible lives. I hope that one day, i will be as good a parent as you. I look at my children (4 of them) everyday now, and appreciate every second that i have with them. Things i used to stress over, mean nothing. You have put my life in focus. Thank you. You have a world (literally) of support holding you and your children up to God. Continue to put your trust and faith in Him, and know that He gave you this special little angel because he trusted you to take care of her, and help her to accomplish all the wonderful things he has planned for her. Follow your heart, for in there is where Gods Will is, and His will be done.

    Prayers,Love and Hugs from MD.

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  136. Bella I hope you are comfortable and at peace, but that doesn't mean you can stop fighting, You are so very strong, Keep it up. Show those doctors that they do not know everything. That miracles happen!

    Tim,

    I know your scared and full of worry for your daughter, but hang on to your hope for a better life for Bella, She has your strength. I know you have a good humor, make some jokes for her today, Laughter is the best medicine. Hang in there, my heart goes out to you and your family.

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  137. Hi dear Bella,

    Yesterday I was watching my little guy, Reid, try to navigate the grass and hills in our backyard. He's not terribly coordinated at this age but gives it his all. And I saw the most beautiful butterfly. I have never seen one like it before -- it looked like something you only see in your imagination. It had very large wings with scalloped edges. It was the softest brown colour with orange, yellow and black spots and lines. I think it was a little reminder from God to send prayers your way yesterday.

    I'm sorry you had a bad day. I know you're tired, you have been fighting so hard. I know this is a scary time but you are so strong. You will come through this. The doctors are telling your Dad some grown-up things because they think they're being kind in preparing him. But we know. We know that you will win. We know that your liver, heart, kidneys and brain will heal. We know that you'll smile that infectious Bella smile again. We know that your beautiful blue eyes will light up and sparkle again. We know. And more importantly, God knows.

    I know I'm anxious to log on to your blog and see you healed but you'll get there when you're ready. And until that time, I'll be here. We'll be here. Praying for you and Ali and Mommy and Daddy. We'll be praying that your doctors and nurses continue to devote their whole minds and hearts to you.

    Tell your Daddy that I would be scared too. It's okay to be scared -- this is a scary thing. Tell your Daddy that when he needs a break that we'll carry you, your Mommy, Daddy and Ali in our hearts.

    Go Bella!

    Love and hugs,
    Kelly in Tampa, FL

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  138. Oh sweet Bella,
    Sweetie, I am praying that you turn the corner and start feeling better immediately! I'm praying for the whole medical team working with you, praying God gives wisdom and courage for the knowledge they have. I'm so proud of you for fighting so hard, your mommy, daddy and sister need you - keep up the fight!

    I'm amazed at how I can love a little girl, who lives so far from me and I've never met. It seems I know you because I talk to God about you almost every day.

    There are two books my two grandsons like to have me read to them. They are VeggieTales, one is God Made You Special and the other is God Loves You Very Much.

    I'm watching your Daddy's blog to see how you are doing so I know how to pray for you.

    Bella, you and your other EB friends who are so courageously fighting this horrible disease have taught me to appreciate even more that my two grandsons are healthy. Their momma is having another baby next spring and I am praying for that baby already.

    Loving you from Waterford, MI
    Kim M

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  139. Dear Bella,

    You are held in the heart of so many people it is truly God's hand at work. I am so sad to hear all the troubles you've been having and keep on praying for God's will to be done.

    Your sister is also gifted to be able to give you a piece of her that will make you well. I'm sure she can't wait for you to get better so she can share all the experiences she's been having while you are getting well.

    It is so beautiful here in Minnesota. I live here in the Twin Cities area, just north of Minneapolis in a city called Champlin. I enjoy it when Daddy posts pictures of the family out in the area and I try to figure out where they are.

    Dad -- you've probably heard about this by now, but just in case you haven't -- Como Zoo has Zoo Boo the weekends of Oct 16 & Oct 23. You can visit their website and get all the details. I took my daughters (who are now 15 & 21) for many years when they were younger and if the weather stays nice, it is a very pleasant experience.

    Keeping you and your family in my prayers

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  140. Dear Sweet bella;
    We were saddened by the news of your bad day. Heavenly Father Loves You and is holding onto you and knows your little body has gone through so much and he knows the strenggth and determination you show. He is going to give you rest, comfort and concentrate on your problems at this time. You are such a precious Angel and one of God's Special Angels. Bella you are being comforted by God's voice and he knows you are hearing his words of love, comfort, strength and healing. You are not alone, God is always by your side along with your wonderful Daddy, Mommy, Big sis Ali and all the people around the world. You are so blessed to have such wonderful parents that love and care for you. God loves all the little children and you are one of them. God holds a special place in his heart and so do we for you and Love You. Bella you are a Great Gift and Blessing from God.
    Tim, Ang, and Ali, we pray that God will give you more strength, comfort and love to continue on with Little Bella's care and that he will give you much needed rest. You all havesuch a strong will, strength and love for Sweet Bella and each other. What a great blessing. We are sending Butterfly Kisses and Hugs your way and to Baby Bella. Keep Fighting Precious Little Angel. Our prayers and thoughts are with you always. Keep the Faith.

    All Our Love;
    Myrna & Dwight CA

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  141. I know, I know...my third comment of the day. :)

    Bella- I cant seem to get you out of my mind. Songs come on and just a part of the song has meaning. Meaning that I connect with you. Josh Groban came on and sang You Raise Me Up. I couldnt sing as the tears filled my throat. The message is for us all because your daddy, your mommy and Ali all lift you up. God lifts you up as do everyone that prays for you. Honestly as the song played I pictured your daddy the entire time. Sitting with you, lifting you onto his shoulders. I still see it now.


    When I am down and, oh my soul, so weary;
    When troubles come and my heart burdened be;
    Then, I am still and wait here in the silence,
    Until you come and sit awhile with me.

    You raise me up, so I can stand on mountains;
    You raise me up, to walk on stormy seas;
    I am strong, when I am on your shoulders;
    You raise me up... To more than I can be.

    Sending you so much love today baby. I hope and pray it went better than yesterday. You also need to tell those drs to think postive. You need only postive energy. Sending you tons of that along with my many hugs and kisses. Plus a huge dose of love to keep you warm. Can you feel it? Wrap yourself in it. Feel the warmth. xoxox

    Denise WI

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  142. Dear Bella,
    My name is Jackie and I live in Pennsylvania with my family. I have a daughter named Grace and a baby boy named Ian. My little girl, Grace is three and I wanted you know that I have told her all about you and your family. She thinks you are "just sooo cute!" And she is praying for Jesus to watch over you and for your "boo boo's" to go away very soon. Stay strong, little one, you are in our thoughts and prayers everyday.

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  143. Dear Bella,

    Have faith little one, in your Mommy and Daddy, and in God, and in all the wonderful people who love you from wherever they are in the world. We will not leave you, we will not give up. Blessings to you Bella, beautiful baby girl, you have already been healed! Love and hugs...

    Dear Tim,

    Do not believe what you see.

    Do not believe what you hear.

    Decide what you want, believe it, and it shall be so!

    There is much I want to say...but right now just...HAVE FAITH and BELIEVE!

    I have created a Vision Board for Bella that I will share on fb...it is my positive affirmation for her. It is my way to visualize what I want for her. To be happy and healthy, with her family all around her. I have stopped talking about her in any negative sense also, to ANYONE, because our words have power too.

    I speak about her as if she has already been healed, because I believe that she has!
    Blessings to you all!

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  144. Dear Sweet Bella,

    I am sorry you had a rough day - I hope you have a better day tomorrow! So many people are praying for you including me! God loves you so much!

    I have a Maker
    He formed my heart
    Before even time began
    My life was in his hands

    Chorus
    He knows my name
    He knows my every thought
    He sees each tear that falls
    and He hears me when I call

    I have a Father
    He calls me His own
    He'll never leave me
    No matter where I go

    Love, Lisa (WI)

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  145. Sweet Baby Bella: So many comments to you, your Mommy, Daddy and Ali..So many many prayers, tears, honesty, and love are being offered to you today. I share your story with everyone, and know that you and your family are truly in God's hands.
    Love Adrienne
    Huntington Beach, CA

    I talk to your Grandma Carolyn each night after she talks with your Mommy. I am praying for that Miracle.

    Ali.... I gave Lucy a hug from you and alot of scratches behind her ears. oxoxoxo

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  146. Dear beautiful baby Bella,

    I havn't dared raise my voice before, although I've been following you nearly daily since June.

    You are in my thoughts often and your current status, brought to us out here in the world by your heroic dad every day, colors my daily mood. I often start up the day with you Bella and also end it. You are a big part of my life...

    That dad of yours must have some rare power because in some amazing way he is still hanging in there and still seems sane?!?

    Dear little one, it's time to turn things around. Let's just decide that your path is up hill from now - please. You and your dear family really need a break now and you need the joy in your life to reign once again. And all the little EB kids around the world need you to keep showing them the path.

    Lots of Swedish love coming your way from a worried Swedish mum/nurse. (Also Mum to a girl with a rare heart-lung condition so I know about walking on my toes and holding my breath and hoping...)/Rob

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  147. Dear Sweet Bella,

    Did you know that you're reaching out to the world?! You're such a fighter and we're all so proud of you! I know you don't feel good right now and I know that it's hard for you to hear your Daddy talking as you're resting really hard, but listen to this sweet girl... You are LOVED and PRAYED for from thousands upon thousand of people around the world! You're so important and we want you to stay strong little one. We're praying that God heal your body here on Earth so that we can listen to YOU tell your amazing story one day. I pray that God wrap you in peace and health right now and that he give your doctors wisdom and guidance on how to make you feel better and I pray that all of your labs line up to where they should be and your temperature and bp line up. In Jesus' name.

    (((((((((((((((hugs))))))))))))) from St. Augustine, FL

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  148. Dear Bella,
    Today is my birthday, but I told people that I didn't want any presents or cupcakes... I asked them to visit your website and to pray for you instead. I hope some of my friends make it over here to send you good thoughts.

    I am sending you lots of good thoughts, and asking God to heal you. I pray that your temperature will come back up. I pray that your beautiful, complex, God-created brain takes a much-needed break, and that soon you will open your eyes and rejoin your family. Please know that I am one of many, many people wrapping you in love and peace and healing all over the world. I am storming heaven's gates for you.

    You are amazing, Bella. Keep on fighting.

    With love and hope from Michigan,
    Sarah

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  149. Bella,
    I'm SO sorry that you are having a rough time. My 3 year old prays for you every night (along with some of your other EB friends). I'm praying specifically that your parents will walk in the morning to a much better Bella! I know our Lord can do it. I'm looking forward to your daddy's post about a really good day tomorrow!!!! Praying, praying, praying!

    Terah from Florida (sorry, no accent) :)

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  150. Dearest Bella.

    I know I dont need to tell you this but your Daddy is awesome. When you get to feeling better you can look up AWESOME in the dictionary and you will see a picture of you Daddy right there next to the word awesome. Trust me on this one sweet girl :)I read about you, think about you and pray for your everyday. You are a super star baby girl and I cant wait for you to flash us a huge smile and say, "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away." Rest well and know you are loved by the world.

    Love, Jen from Louisiana

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  151. Bella:

    I don't have nearly the right words for you, but I want you to know I think of you daily and so do the kids.

    I will hope beyond all hope that Daddy's "Heaveno" will be following by a winning day (Bella Has a Shutout :)

    So, Bella, please Shutout the other team!

    Bella, please be well, please, please, please!

    Tim and Ang, keep the faith that you have and continue to provide. Your outlook and spirit is beyond incredible.

    Hugs from CT for princess Bella :)

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  152. I learned of Bella's blog from Jonah's blog. I work as a PICU nurse in Washington state and I am drawn to the medical aspect of children with EB. Bella's story is an amazing gift from God, however hard and frustrating it is for your entire family, He is using her to reach people. Despite how hard it is to hear what the medical staff is saying, I feel your energy of HOPE. One of your number one jobs as Bella's parents is to have HOPE, and you are doing an amazing job! I pray God blesses Bella with 100% recovery of all her organs....that your family grows stronger and closer through this.
    Lori

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  153. First time commenter, short time reader, forever impacted by your family's story and strength.

    Be well, Bella. You have so many people thinking, praying, and praying some more. Thousands are wrapping you in the warmth of their love and thoughts. Heal, baby, heal.

    Love, from my family to yours.

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  154. Sending out many special intentions for Bella tonight. All of you are enveloped in our prayers. Fight, Bella, fight!!!! The angels are watching over you tonight...

    Watch, O Lord, with those who wake,
    or watch, or weep tonight,
    and give your angels and saints
    charge over those who sleep.

    Tend your sick ones, O Lord Christ,
    rest your weary ones,
    bless your dying ones,
    soothe your suffering ones,
    pity your afflicted ones
    shield your joyous ones.

    And all for your love's sake.
    Amen.

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  155. Father, I thank you so much for Tim and the wonderful family you have blessed him with. I ask that they continue to grow and know you and Your love each day. I thank you for being sovereign and in control of everything so that we never have to go through anything alone. Right now I ask for complete healing for Bella. Lord, you are completely capable and able and we ask that you touch her and make her whole. Please give her and the family the peace that passes all understanding. Fill their hearts with Your joy and love even in this hour for Your praise and glory. Thank you for the gift Bella's life. Thank you for forming her, knowing her, and loving her even more that we do!

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  156. Dear Sweet Bella,

    We have been following you from day one. Our baby girl Hope was born just days from when you were born and she too was born with EB. She has DEB and is doing well. We check in on you daily to pray for you and your family. You are such an inspiration sweet girl. You and your awesome family have brought smiles to so many faces and so many people closer with their creator. Those are some amazing feats for a girl so young. I can tell that your mommy and daddy are so proud to be your parents. Keep on fighting girl. We love you and we are storming the gates on your behalf.

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  157. Praying, praying, and praying for Sweet Bella!

    Bella, I love you Sweet Girl. I know you can pull through this. You just have to KEEP FIGHTING and beat the odds. You've done it before, and you are so amazing, I know that you can blow everyone's mind. I hope you're awake, peeing, and breathing on your own VERY soon. Love you. :)

    Patrice (Jonah's Mommy)
    Winston Salem, NC

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  158. Bella,

    Sorry you had a rough day -- everyone is entitled to a rough day every now again. Now that you've had yours, it's time to move on to getting stronger, getting better so you can enjoy watching pesky squirrels with your wonderful family -- I love squirrels too! Keeping hanging on -- even upside down just like they do! Praying for you daily in Hampton, VA.

    Susanne

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  159. it's time you prove these doctors wrong once and for all!! stay strong sweet bella!!! we're praying for you!!
    love, amber
    humboldt, ia

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  160. hello,
    i am one of those who read your blog but never write---until tonight. I found you through a long and circutious trip--- long ago (and I dont know how) I found McMama when her little Stellan was fighting so hard.... from there I found Jonah and through Jonah-- I found Daylon and through Daylon I found you. Pretty amazing how all the "circuts" came together to find you.
    Please know that I am keeping you and your family in my Prayers. The God I know, listens to heartfelt prayers.. and baby, you are being covered with prayers . I pray you have healing that will dumbfound your docs and happiness to beat it all.
    Brenda

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  161. Dearest Anabella and Family,

    I often struggle with the right words, or any words for that matter after checking your daily update. Today I have no such problem for I feel in my heart that the following modern perspective on the 23rd Psalm is appropriate for You, your Mommy, your Daddy, your spritely Sister and the prayer chain that now spans The World:

    The Lord is my constant companion.
    There is no need He cannot fill.
    Whether His course for me points
    to the mountaintops of glorious ecstasy,
    or to the vallys of human suffering.
    He is by my side,
    He is ever present with me.

    He is close beside me
    When I tread the dark streets of danger,
    and even when I flirt with death itself,
    HE WILL NOT LEAVE ME.

    When the pain is severe,
    He is near to comfort.
    When the burden is heavy,
    He is there to lean upon.
    When depression darkens my soul,
    He touches me with eternal joy.
    When I feel empty and alone,
    He fills the aching vacuum with His power.

    My security is in His promise
    to be near to me always
    and in the knowledge,
    That He will NEVER let me go.

    From Pslams/NOW, by Leslie Brandt and Corita Kent

    As for me, you can count on the Mantra unceasing, "...there is a Balm In Gilead, mmmmmmmm..."

    Love,

    Brian

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  162. Bella-

    This is the first comment from me, though I have followed your story for a long time now. You are amazing and beautiful and strong - and, in the words of Christopher Robin to Winnie the Pooh -

    "You are braver than you believe, stronger than you seem, and smarter than you think."

    Be brave little one. Fight hard, and know that we are fighting with you.

    Love from WA.

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  163. Bella and family,
    I too am one of those readers that never comments but always prays. I've been following your journey for a while now. During the day, as I'm going about my normal activities, I think of you and pray you are doing well that day. I try to check for your updates every night but sometimes I miss it and simply "must" check on you in the morning. :) You and your family are amazing and have been through an incredible roller coaster ride. It amazes me how much YOU are able to teach DOCTORS, Bella! Your spirit, strength and perseverance show the doctors that not everything can be fixed or cured with medicine. The Lord does amazing things and He proves that to thousands of people around the world who follow your story every day. You inspire ME, Bella. Someone I have never met, someone who is 30+ years younger than me, inspires me to be stronger, work harder and believe in God more and more every day. Bella, you are such an amazing little girl. I am so touched by you. I pray God continues to give you strength. I know He is right there with you, holding you close, protecting you. And WE, all of us who are in this journey with you, all around the world, WE are also right there beside you, holding you close (in our hearts) and trying our best to protect you with our prayers. We love you, sweet Bella. I love you. I pray today has been a better day for you. I'm anxiously awaiting your daddy's update to see. I pray EVERY day brings you another step closer to being able to say, "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away."

    With lots of love from a mommy in Virginia Beach, VA,
    God night (I really like that, Tim!) :)

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  164. You and your family are not alone! We and God are with you....
    Jen in Colorado

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  165. Singing, "Savior, you can move a mountain, My God is mighty to save, You are mighty to save. Forever, author of creation, you rose and conquered the grave..." (Mighty to Save) for Bella tonight! Storming the gates of heaven from South Carolina.

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  166. Praying for you, Bella! The world loves you!

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  167. Oh, Bella, you are so loved! Praying, praying, praying for you!

    Nancy in CO

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  168. Sweet Bella!! We are praying for you in West Des Moines, Iowa! We love your pumpkin hat, and your fabulous socks!! Hold fast, sweetie!! My dad is in the hospital too...fighting cancer! It is no fun, but your daddy has taught us some important lessons about mean doctors, and that we arent at the hospital to make friends, and we thank you for that! We have warm clothes for Ali if she needs them...just say the word! Lots of prayers coming your way!!
    The Roush House
    rwcroush@aol.com

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  169. Dear Bella and family,
    I want you to know that you are in my thoughts and prayers on a daily basis... well multiple times during the day actually. I pray that you feel the love being sent your way and you find strength and peace to get you through.
    Lisa from IL

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  170. Dear Bella and family,

    You are in our prayers. You are such a precious Angel.
    Jen from Ohio

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  171. Dear Bella,
    You are a beautiful child of God. As I lay here in a hospital bed next to my 4 year old son, your story touches me. I know what it is to spend countless days in the NICU, to have Doctors and Nurses speak in hushed tones and to have kind strangers pray to God. Tonight I pray that God holds you and your family in his arms, he carries you through this difficult journey and his love be evident in you. Sleep tight sweet girl, rest and grow strong.

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