Wednesday, September 22, 2010

September 22: Day +82



Heaveno!

First off, thanks to all who commented on the blog last night. There were a lot of very heartfelt comments and we really appreciated the conversation.

If you are a reader of our blog, all I ask in return is that you comment every once in a while. If you are praying for us, it means the world to us to know that. We know through google that the blog gets hit roughly 1,200 times a day from all over the world! We don't know that many people, so to know that "total strangers" are praying for us... it gives us hope that the world really is a wonderful place after all where just the crummy news makes headlines, but the wonderful news - THE GOOD NEWS - is alive and well in each of our hearts and minds that come to THIS place on a regular basis.

Why do you come? What is it that you get out of our journey? We know how you are helping us. How are we helping you? In addition to your intentions and prayers, hearing from you answer these questions would support us tremendously. I believe that this blog is part of God's plan; capturing, chronicling, and witnessing this journey was part and parcel to Bella choosing EB. She chose us, and I believe this is yet another reason why. Whether or not that is actually 'true' matters not. As long as it keeps me writing every day, that seems to be a good thing.

Okay, onto Bella...

We had a 40 minute rounds this morning outside Bella's room. Man, was that NOT a walk in the park. There were a whole lot of annoyed people by the end of it all because pretty much Dr. Wagner and I were basically arguing in front of everyone for much of it. Let's just say we are not seeing eye to eye right now and we're both pretty adamant about our feelings.

Here's the deal... Bella's A-line no longer works, and we are still not able to get a cuff pressure from the traditional blood pressure cuff on either her arm or her leg. So, that means that we really don't know where she is with her pressures. This is not a good thing. She is running a heart rate of 150-160 while sleeping. That is 50-60 points higher during sleep than only 2 days ago. It suggests that she is dry in her vasculature, but her CVP is still generous.

Things haven't added up with Bella for a while, and right now, they are adding up less and less as the days go on. How could this kid who was so statistically perfect for this study go so awry? Bella, you are such a mystery to us all.

Anyhow, I tried to stay a little preoccupied with some work today so I wouldn't go crazy in her room over this blood pressure issue. Somehow, they have just thrown up their hands and given up how to get a pressure on her. It boggles my mind frankly.

P.S. She hit 16 kilos today.

I have a concern that there are some people around who have given up on Bella. I haven't. Angelique hasn't. YOU all haven't. Please pray for some fresh vigor in the ICU team over the next 4-5 days or so. I think they are just worn out.

We started a schedule for Bella today! We are attempting to recreate the same wake/sleep schedule we had back home to re-anchor her circadian rhythm. Our bodies are rhythm factories. Every system we have operates in rhythm. The ICU is not a rhythmically harmonious environment! It's really a sensory deprivation arena! So, from 10-1 the lights were out, the curtains drawn, the music off. From 8-10, the lights were on and we were playing Mickey Mouse clubhouse just as if we were watching Disney channel back home in the morning. We woke her back up from 1-5 and then let her be from 5-7. Then, one last hurrah from 7-9 and it was lights out for the night. We started elevating the head of her bed to have her sit up during the awake hours. Anything we can do to help trigger the body to remember its normal rhythm...

Tomorrow, I will be 'requesting' that the Dr. that came and put in the a-line in Bella's left wrist pay a visit and attempt one in her right either tomorrow or Friday. We simply cannot afford to be flying blind through the clouds here at this delicate point of the journey. If he can't do it, he can't do it, but at least TRY.

Lord, please ignite a fire in the spirits of all of Bella's treatment team. We get a new BMT doc tomorrow, and I don't know who it is, Lord. Whomever it is, please invest in them some ownership over Bella's well-being and progress over these next two weeks while they are on service. This journey is so mysterious, Lord. Please help each of us remember that it is not mysterious to you, and that your plan for Bella is right and perfect in every way. Please infuse that feeling of trust I have had before; you know in my heart that it comes and goes. Lord, I pray humbly for the willingness to trust in the blindness, and trust in the mystery. Lord, please forgive me when my faith wains, and my stand weakens. Instead, please REJUVENATE my faith that one day Bella 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."

Thank you, God, for hearing my heart and listening. I am so grateful I can share my conversation with you with so many. We are all your children and we are all brothers and sisters. Thank you for giving us this tool to connect with. Thank you for giving us each other. Thank you from ALL of us for giving us Bella. We are blessed by this little girl WHO WIL BE WELL! (Thanks for that, Donna!)

God night.


This is how the rock star has to start the day today... too bright for her...


And this is how she finishes the day... a little chilly on the feet I guess!

Yes, she IS only 4. Wish us luck! LOL.

100 comments:

  1. i anxiously await your post every night tim. many nights i have fallen asleep with the computer on my stomach, holding down the refresh button!!!
    your devotion and unconditional love for sweet bella are inspiring. i haven't given up on that precious baby and am so thankful that god gave her such strong warriors to be her parents.
    prayers are being lifted for bella and all her family!

    god bless y'all!
    susan
    w-s, nc

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  2. I have been following Bella since she was mentioned by Daylons mom. Your family inspires me! You are in my prayers.

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  3. Praying that tomorrow will be a better day, one of fresh ideas - a discovery of some little piece of the puzzle that is missing which will heal your beautiful daughter. God bless you all. Hugs, Terri

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  4. I never comment. Ever. I generally prefer to keep my opinions private, but after multiple times of your asking us to do so, I figured it's the very least I could do, could give to your family... my explanation why.

    I have to admit that at first, I started coming here for selfish reasons. When down and blue, reading Bella's story would put things in perspective that while something mundane in my life may be awry, it could always be worse. But isn't that life? No matter what's going on, things ALWAYS could be worse. I'm lucky enough to have my health, and the health of my child. Bella allows me to see that, and to be thankful for that. It didn't take long, a few reads really, for things to go beyond that. It went from the selfish to something broader. I became to fully love and care about Bella.

    Every night, I check here at a ridiculous rate, anxious to get the update to see how this precious little girl is doing. Hoping upon hope that today was a good day. Randomly throughout the day, she will pop in my mind, leaving well wishes to be sent her way.

    Our views on religion are different (to each their own, right?) but at the core, we have the same thoughts. God/the universe put Bella in my life, to see the broader picture of the world, and to bring out a love within me that can exist for a set of strangers I will never meet, but hope the best for. And you know, ultimately that best will come. Bella WILL get better. Bella WILL be healed, and we'll all breathe a collective sigh of relief, because this little girl who was born to you, but is in the hearts of so many, will get to laugh, and play with a twinge of a smug smile on her face that says "yeah, I made it, and I made you all see." Well, at least she made me see.

    Love to you all! Thank you for sharing your journey with us each and every day. Know that it's greatly appreciated, because well, it is.

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  5. I am glad that I can send you a message every once in a while and some prayers for your sweet bella. I don't know what your story or blog gives to me, other than a chance to really appreciate what have and what most take for granted. I am very touched by the whole EB (your blog is not the only one I read) as I cannot imagine what the babies have to deal with (and the link you posted the other day, how can that baby deal with EB in a country that lacks the basic health care ! Heartbreaking) Anyways, I don't want to be just another person who sheds a tear and moves on. I have chosen EB as a cause I will support when I donate to a charity. In fact, I have contacted Ro-Ann at Debra and will be sending her a pair of my handknit mittens to use in the upcoming auction and I am also sharing the stories with my friends, perhaps someone can help as well !

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  6. I've never commented before. After reading your blog for months now, though, I think that if you can share so much of yourselves then the very least I can do is tell you why I check often for updates.

    In the beginning of the summer I stumbled upon your blog and read through some posts out of curiosity. I knew nothing about EB or the process of a transplant. I started checking back regularly and found myself thinking of you and your beautiful baby girl every now and then during my day. As the weeks have gone by, thanks to your honest and sometimes heart-wrenching updates, I've felt more and more involved in the drama unfolding your family thousands of miles away. I don't share your religious views, but I've found myself sending positive thoughts to Bella over the last week especially.

    At first I read your blog out of curiosity. I read more because of the lovely quality of your writing. And I keep checking back every night because I'm cheering for that lovely baby girl of yours.

    Sending warm thoughts of healing,
    C.

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  7. I too am so boggled that Bella has not yet turned the corner. Come on baby girl. Keep trying.

    If you were to ask my family about my experience with Bella and Daylon they would tell you I rattle off details about what I have learned and that I truly care about these kids.

    When I was at Primary Children's with my little boy yesterday taking care of his simple issues I passed a couple in the hall. They looked like the right age to be young grandparents. She was crying, he was being strong, but their hearts were breaking.

    I really stopped. I mean stopped in my thoughts of the day and I really prayed. I prayed for all of the babies and children filling the floors of that hospital and others. I clutched my little boy a little closer as I sat and waited in the waiting room. I cherished his little hand in mine. I cherished his health.

    What are we getting from this?

    Well, my heart is spilling over.
    My heart is spilling over and I have a desire to make blankets and procedure dolls for loving hands to give to children that I cannot hold and comfort. For children of parents who are so weary. For parents who could use a shoulder to cry on and someone to just think about them and pray for them and ask the Father of us all to please lift their burden today so that they can keep it together for another hour.

    Maybe some don't comment because they don't do so well with their emotions. Maybe some don't comment because they just can't imagine they could have the right words.
    I deleted my comment from yesterday because I did not want it to be perceived incorrectly. I worry about having the right words.

    You are carrying such a heavy load. But, Bella and Daylon and others have touched the hearts of those who have followed their journeys. I feel invested, I feel my own growth.

    I believe that families can be together again after life on this earth. I believe that the investments that we make here are not lost to physical death. Loving the people around us can be so joyful and so painful at the same time. But, I believe it is all worth it.

    Thinking of all of you and praying for Bella to turn the corner,

    Cheryl

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  8. I've commented a few times before, and like many others here i anxiously await your wonderfully written, often heart-wrenching but so simultaneously uplifting updates about bella every. single. day. my husband and i have our own blog where we update about our daughter (within a month or two of bella's age, i think www.edieq.com) and we usually have to scramble to find the time to update once a WEEK. and yet you faithfully write every day. I'm amazed, and yet, i think i understand the need to process the day's events, reach out to a larger community outside the hospital, and document this amazing process for bella to be able to look back on someday when she doesn't even remember what it was like to have EB :-)
    bella's story definitely helps bring perspective to my life, as others have said, but more than that, she motivates me to sit here at my desk night after night while my own daughter plays with her daddy and study. i'm a second year med student and all of the amazing stories i am priviledged to read daily about bella and other fighters out there keep me focused on my future patients, and help me remember that no matter how dry sarcoidosis (my current reading topic...) may seem tonight, one day there will be a real patient (i only hope he or she has such a devoted family to advocate for him/her as bella does!) to put to this chapter in my textbook.
    thank you for helping me learn (you wouldn't believe how interesting and insightful (although definitely not by the book :-) all of your discussions about bella's cardiac issues were last month as i was up to my eyeballs in my cardiac unit in school...) thank you for sharing your soul, for putting a face, name, story, and life, to the topics that i'm learning about daily.
    bella keeps me motivated to learn as much as i can, and enjoy this time with my daughter and husband. as i put my little one to sleep tonight she was holding her hand up like bella was in the a-line picture and i said a silent prayer of thanks that my sweet edie is unaffected and another prayer for bella that one day she too will be unaffected by EB.
    ~ashley

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  9. oh dear, the situation now is really frustrating. doctors have knowledge, and i'm sure they do what they can, but when one tries all one can, and still no result comes...it must be hard on them too. I check bella EVERY morning and i hate to see that, day after day, no one is able to improve her condition. I can't imagine your pain and frustration at this point.

    I don't remember through whom i came to your blog, because I follow many EB children blogs, my number one fan was (and still is, sort of) JONAH, through him i learned about EB, and sort of fell in love with him and then with all EB babies. I think I follow them because of the STRENGTH AND LOVE their parents share, in spite of the odds, I feel humble when I compare myself to them, and make me want to be a better parent and a better person. EB babies and their parents an EXAMPLE for the world. When I see Tripp doing tricks (I love, love Tripp's tricks), Jonah playing, Elle smiling, Daylon growling, Hannah back at school, Sam fighting, your little Bella fighting...and all the while you parents LOVING and LIVING, striving to give a "normal" life to EB babie's siblings...it makes me feel parents are the strongest human beings.
    And you all write to feel better about it, and those of us who read cannot do much to help, except read on - proud to know that by reading, we are helping you through.

    I'm not religious, and it is also beautiful to see that religious and non-religious unite to help Bella through, each helping in their own way. I really liked it when you wrote for the first time that you thanked not only those who prayed, but also those who shared thoughts and good intentions. Even though i don't pray, i wouldn't want to be left out, and i'm glad you consider us non-religious as much "helpers" as the rest... :-)

    Love and hugs

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  10. Hi Tim,

    I honestly don't remember how I came across your blog. But I can tell you that you have strengthened my faith and taught me a lot. You are a lovely writer and have a lovely family and I feel compelled to cheer for you and pray for you every day now. I think your authenticity is what draws me most to this blog. People like you are very rare and I am so impressed with your daily stories. I've honestly never seen anyone stand up to doctors and "experts" like you have done. If I ever have a loved one in the hospital I will look to you as a role model. Although my problems in life are not nearly as stressful as yours, I am reminding myself daily that I really don't have control. I think you've helped remind me to lift up every aspect of my life. But you've also reminded me that the Lord made us to be spokespeople and fighters and people with passion and heart and purpose.

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  11. Hi, Tim and Ang,

    When my second child with EB was born, I started browsing for blogs of parents of EB children. I have followed the transplant story of Keric, Hannah, Fallyn, Sam and Rafi, so it was natural to follow Bella's. I returned to the beginning of your blog to find any useful care tips, because at that time we had serious nappy issues. Your story reminded me of so many similar moments in our story - even the change in the diet. We did it with our previous child, but it didn't help him. May be it helped us to have strength and cope with all the efforts?

    I am from Bulgaria, Europe and my stays in PICU were different from yours, because here they allow only the mother to stay with the baby in PICU and for reasons to prevent infection I was not allowed to go out of the ward, and was "on duty" with my baby for 24 hours every day. The doctors and nurses entered our room only on rounds and when they have to change the IV or administer antibiotics/blood/whatever. Never was there any pain meds for my babies, because nobody is used to giving pain drugs to such small children here.

    So while reading your blog I see how different a stay in a hospital can be and how difficult it is, nevertheless.

    I really admire your efforts and your courage and my heart aches when I see the pictures of Bella and what the treatment is causing to her, I know how it hurts to see your child changed and hurt by "treatment". I look at your so tired and frightened faces and I am deeply sorry for you both. It is a situation no parent must be in. It is so good for you that your little Ali is around you to raise your spirits by her innocent joy of life!

    So I keep praying for Bella! I hope that she will give you the same happiness as Ali while you watch her play and enjoy life. I hope this moment of crisis will be overcome. I want your story to have a happy ending, I am fed up with bad endings.

    So, good luck, Bella! Good luck, Tim! Good luck, Angelique! Good luck, Ali! I am praying for you all!

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  12. I came across your blog through Jonah's. I stayed because I became invested in Bella. I have three kids of my own - the youngest is 7 months - and it breaks my heart that there are babies who are enduring such suffering. So I read here every day and I pray and hope.

    What you have given me is to not take everything in my life for granted. To be thankful for the health of my kids and to try to be more patient with them.

    I am constantly amazed at your strength and I appreciate your testimony about the work of God in you lives. I have not given up on Bella - I pray that her pressures will stabilise and that the doctors will find new wisdom in finding a solution for her.

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  13. EB kids in general are just beautiful and amazing to me. But with Bella, here on this page; I get a renewed sense of will. I mentioned in a private message to you just what I am going through right now. It's not fun, and it's not easy. When times get heavy, I think of Bella and say, "okay, I can do this because Bella is going to do this and we both are going to overcome". I can't explain it well, but Bella is my partner of sorts and I fight so that Bella will fight. I feel like I'm doing all I can that way. I have started to actually pray, either out loud or with my arms stretched into the air. I am taking steps to get into a good church again. Then eventually, I'll be joinging the fight to end EB in whatever way I can. Among other diseases like Cancer. Or just giving back to my community and helping people who are where I used to be, where I am now.

    Bella is my hope. Tim, Angelique, Ali; you are my hope. The love, care and pure devotion is a sign that God exists in this painful world. You are amazing.

    Prayers for Bella, I can't add much to what you already said Tim. Keep yourself healthy and able so you can fight too. It makes me angry and disappointed that some would give up on Bella, but there's very few that can make that decision about giving up. I don't believe that's yet. I pray ever so deeply that those ICU jerks will come back around and realize that yes! we must give all we can to Bella because she gives all she can to us. Must we not offer her the same?

    FIGHT, Bella. You keep fighting, because the people who matter haven't given up on you.

    Love,

    Mel

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  14. I look at that picture of her beautiful face and I can't help but wonder what on earth is causing her to blow up like that. I feel so bad for her. I want nothing mire than to see her finally turn that corner and all of a sudden start losing that fluid and regain control of her blood pressure. I've been following your blog since the beginning of Bellas journey with this clinical trial. And I have grown to love her and love your family. I look forward to reading your blogs everyday and I feel like a part of the family who is rooting for you guys. Bellas story is so inspirational. It touches my heart. It reaffirms in me the power of prayer. The power that comes from believing in God and trusting in Him. Bella is so young yet she is so strong. My older sister Megan was diagnosed with stage 4 glyoblastoma (brain cancer) on Jan.15, 2009 at the age of 31. Her diagnosis rocked my world to the very core. She is so brave and yet her outcome looks bleak. However, she stays strong and fights everyday and puts her trust in God and his plan for her. I read about Bella and I see that same fire. That same love for life and desire to live. She is such a beautiful child of God and I look forward to the day that I can read about her going home and playing with her sister and telling all her friends about how she "used to" have this rare skin disease but when you brought her home from the hospital it went away. Stay strong. Lots of prayers are still being sent up for her. Lots of prayers for the staff there and for your family too. God Bless.

    Take Care,
    Amber McLaughlin,CA

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  15. Every single day i came here and I read Bella´s story, and i pray for you and your lovely family. I am also a mother of two little girls, and i just can´t imagine all the pain and suffering you are dealing at this point. I am from Portugal and i found your blog through a blog of a Portuguese mother who has a daughter with EB. I pray that your family can pass this situation as soon as possible. I pray for your everyday, and for beatifull baby Bella. Sandra Coelho

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  16. I can't remember how I found your blog, I guess through Jonah's or Tripp's. My faith is quite different to yours, but I too believe that the world is a wonderful place, and that people are mostly good. I only wish there was something we could do to help Bella get well. You know better than anyone else that her spirit has been shining and singing since the day she was born and even before that, you can hear her song and you always will. I wish Bella a long and happy life. I wish your family peace and love and strength to help Bella get through this. Hold onto the positive and it will help you deal with all the negative stuff round about, it must be so difficult for you. I don't pray but I am wishing and hoping as powerfully as I can for your Bella. Thank you so much for sharing.
    LMH.

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  17. I am the mother of Natalie who is 1½ years old and she has Recessive Dystrophic EB and we live in Gothenburg, Sweden. I follow a couple of blogs about transplants, don't really remember how I found yours, perhaps from Daylons blog. I blog myself about Natalie and EB and I have put your link on my blog and on facebook so maybe I'm resposible for a couple of swedish readers?!

    Keep up the good work Bella and know that I'm sending positive thoughts to you and your friends in Minnesota fighting through the transplant! You bring hope to all of us EB-parents that some day all the answers will be there and we don't have to be frightened for what the future holds anymore.

    Best regards Jenny with family

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  18. I found your blog reading Elly's blog (Swedish) and I have only commented once before. But every day, morning and night, I check for updates hoping, hoping, hoping that there will be good news. The way you write about Bella, how you love her and fight for her, are my reasons for reading every day. It is impossible not to feel involved.

    As a mother I know the love you feel for your child. But becoming a mum is not only feeling the love for your own child but for every child, wishing them all happy, healthy lives. It is impossible not to feel for Bella and you all, wishing you all the best.

    Alexandra

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  19. Hello guys...We are again today sending prayers of strength and healing your way...We comment every day and we read your blog everyday...Why you ask? :) Well, as you know Casey has RDEB just like Bella. I think once you are an EB parent you adopt and love everyone else's EB child as your own in spirit. In Every blog you write and every comment you share we can find a word or experience that we also share. EB reared it's ugly head in my home three years ago and it's been a whirlwind ever since. We pray for her and your family every night. I read and follow your blog because I believe every family that goes through transplant is fighting for a cure for my son. Bella and your family are paving the way to one day set my son free of EB. How can I not cheer everyday for her. I pray that one day soon we will have the opportunity to go through transplant and following Bella and all the other children give us an idea of what it will entail. We are chickens right now (bawk bawk..I know... :)
    Your family and Bella are our pioneers ..fighting for a cure for those of us who just aren't brave enough yet. When we hear of an EB child,as an EB parent .they become ours too. We know what you truly go through and it connects us and we feel for you in a way that others cant....That's why we read your blog... :) THat's why we pray for your sweet girl every night. Stay strong ..never give up hope..sometimes it's all we have that keeps us going..when the doctors get weary jump in...refresh them with your ideas..we will continue to pray that Bella will turn a corner and that one doctor real soon will dig in with some fresh ideas. NEVER EVER GIVE UP...THEY SENSE IT...Stay strong, stay together and take care of yourself. You have prayer warriors that spread throughout the world... Hugs and kisses to you all..
    john,beth,Zach and Becky Neikens
    johnbeth91@aol.com

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  20. Tim, don't give up - you are Bella's voice when she cannot speak. I remember a little boy who not so long ago the docs were ready to give up on him and his parents were the reason they kept going. I love Daylon's story. I see that for Bella.

    My specific prayer for today is that the medical team see Bella as a tiny little person who needs them to fight! I'm praying that God will direct their thoughts and minds to use the knowledge they have and to give wisdom beyond all understanding.

    I know I am a stranger, but I have learned to love your little family. Thank you for updating.

    Kim M

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  21. Hi There
    I'm not sure how I came across your blog and had not heard of EB before.
    Sending positive vibes and healing all the way from Australia. I am praying for you.
    Fran xo

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  22. I start and end my day checking on Bella. Your family is in my thoughts every moment. The medical team will have enlightened attitude and new ideas because there is no other option! Hang in there Bella, great minds are at work to get you back on track.

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  23. I have been following your journey for a while. I think I found it through Jonah's blog. As a wife and mommy of two children, reading your blog reminds me to see my blessings everyday as you all face this unbelievably tough journey and still remain thankful. Thank you for helping me see that God is in control and will see us through anything. Bella is such a fighter and I know that she will be healed so that she may go on to do wonderful things in life and become an inspiration for so many people. Her story is a powerful and amazing one.
    I pray for her and your family daily.
    Sincerely,
    Jackie from Pa

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  24. Hi Tim,
    I've commented once before, but like so many others, I check in every morning before work to see how sweet Bella and your family are doing. She and all of you are constantly in my prayers and intentions. I also was inspired by a post you did a while back to start volunteering at the local RMH - I'm toting all my kid-friendly instruments up there once a month and letting kids explore and play. This past month I met some truly amazing kiddos. I'm so glad I'm doing it. :-)

    God bless!

    Stephanie Kuester

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  25. I have been following your blog for a while now but frankly did not take the time to ever comment. your last post asking for people to leave a note really striked me as I realized that you give me a lot and in return I could give you more, just by commenting once in a while letting you know that I think about bella several times during the day. I have 3 children and your story really helps me to see how blessed I am wiht my life.thanks to your blog and to bella I have never hugged and kissed my kids. I guess your blog helped me to realize that there are things we can control, and things we can't, and trying to control what we can't is just a waste of time. you help me focus on what I have and that's what I should (and I am) be greatful for.
    I can't wait for Bella's weight to go down. when I see the pictures of her on the right when she was so tiny, I can't wait to see her opening her eyes and smiling.
    Sincerely
    Nathalie

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  26. Hi Tim: Leah's Nana here and you know why I am here everyday reading to see how beautiful Bella is doing. Once EB comes into your life, everything changes. We are a small group but we are hoping and praying that there will be a cure for this awful disease.
    I am praying so hard that the Drs can figure what the heck is going on and do something to help her. God, it must be so frustrating to be there and not be able to help your daughter. You are her biggest supporter and advocate and God Bless You for that.
    When Bella gets older, she will read this blog and realize all you did for her while this journey was taking place. Hang in there. Keep the Faith. God Is So Good!! Love and Peace. Love Leah's Nana

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  27. Why do I read about Bella? It started by clicking a link somewhere... I don't even remember where, but it was right before the transplant day. Immediately felt a connection and kept reading. Now I'm hooked & I just have to see Bella through to the other side of this journey! I want to see her up and out of that hospital with healed skin.

    I guess, for me, it gives me a greater feeling of depth in my prayers when I am able to include Bella & her family, and others who are young families like mine who really need what I can give: support through prayers and kind words.

    God Bless you. Thank you for allowing us to come along on your journey.

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  28. I have been following your blog for quite some time now but have never posted a comment, I just want you all to know we are praying for sweet Bella all the way from London Ontario Canada!!!

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  29. I found your blog through another one and have been with you since the beginning of Bella's transplant. I check on Bella each morning as if she was one of my grandchildren, guess it is just the grandma/nana thing to do. I think of her occasionally throughout the day and say a little prayer for her, and a prayer to keep all of her family strong.

    I think the way you share Bella's story is what keeps people coming back.

    The Cooley family in Nebraska

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  30. I check in on all of you everyday because I love each one of you, we are one after all. I need to know how each one of you are doing mind, body and spirit.

    What has bella done for me? She brought me closer to God, closer to the understandings of His plan and ultimate intentions.

    Thank you Bella! I love you little princess!

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  31. Praying that the doctors & ICU team can find a new spark of energy & fire over Bella's care and recovery.

    Praying for strentgh for all of you to "Keep Moving".

    Praying for Bella to continue to fight & recover.

    Your family is truly an INSPIRATION to me!

    Tina in NJ

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  32. I have not given up on Bella. I will not give up on Bella. I've said it before but I feel deep in my bones that she will come out of this.

    I come here every day praying that the today was the day it all clicked. I come because my heart is invested in your little girl. You and Ang are so brave to help Bella fight this fight. Your dedication to your daughters amazes me. How you are able to balance Bella, and Ali, and your marriage. I'm sure it's the toughest job and somehow you wake up every morning with your eye on the prize. Whether it's a date night with Ang, taking the family on an outing, or spending every waking min next to Bella.

    When I first heard about Jonah I was amazed with his story. Then Tripp's. Then Raffi's. Then Bella's. Then Daylon's. Now Elle's. I'm a parent to 3 beautiful kids and can only imagine the pain that EB kids go through, what their parents go through. When I read these blogs I'm reminded how lucky I am. And I see my kids in a light that I wouldn't have seen them in if I hadn't known of Bella and everyone else.

    I pray that this day is the day, and I can't wait to read about it! God Bless.

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  33. I found your blog through Jonah's blog and just have a strong urging by God to follow your journey and pray for Bella and her sweet family. Know that you have someone in south Alabama "Dothan" lifting you up in prayer. Lisa

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  34. I don't know how I got here, but I check in every morning to see how Bella did the day before and say a prayer for her and your family. Why do I read your blog? Hope. I have so much hope for Bella and your family. So I'll keep reading and praying, waiting for the day when Bella turns the proverbial corner. Hold strong, I have faith that it will happen soon.

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  35. I have never commented here before and I rarely comment ever... I wanted you to know Tim you are an inspiration to me. You never give up, you fight harder and harder every day. Bella is so lucky to have a dad like you. I read almost every day and I am so in love with beautiful baby Bella, I pray for her and many other kids with EB. I can't imagine an outcome other than the best for you and your awe inspiring wife and daughters.

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  36. aunt mary beth in nc told me about your blog...her love for little bella and all of y'all naturally spilled over to me :)

    god bless y'all

    susan
    w-s, nc

    2 posts in one day....y'all are on my mind and in my prayers all the time!

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  37. Hello, I am a stay at home mom of triplet 2-year-olds. Two boys and a girl. I read your blog faithfully everyday and check it several times a day. Why? In some weird way Bella and your family give me hope. Especially on days when when my three sweet darlings are really giving me a run for money and I want to just lock myself in my room. I remind myself of your paitence and grace in dealing with a much harder situation. I have become so attached to this sweet little girl that seems so helpless, the least I can do is send prayers and leave a comment on your blog. I am continually amazed at your faith and grace during such a heart-wrenching time with your sweet baby girl. I pray the doctors do not give up on Bella, she is not given up on THEM yet! Sending hugs and prayers fromm Omaha, NE. Mary, Jeff, Lainey, Nick, and Gabe.

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  38. I found you through Jonah. Pray daily as I watch your blogs. I am an ICU RN and this all makes medical sense. All the complications can almost be predicted by many. However, I am also a child of the King, and am praying for God'g BEST blessings on Bella and your family, whatever that may be and however He may be praised the best! Submission to His Perfect Will is so hard for us to do! So, whatever brings our Precious Savior the most glory, let Him have His way! Let our hope always be in Jesus Christ and His Best Way! Blessings on Bella and family and for strength to endure the day. That is what we have, only today. Praying...........Deb

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  39. Hi! I found your blog through Jonah's blog and have been following it ever since. Bella and Jonah have a special place in my heart. I have been so impressed by your courage, dedication and resilience. Bella has such a wonderful family protecting her and loving her everyday. The least I can do is offer my prayers from a distance. Best wishes, Liz

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  40. I never comment, but I've been reading and praying for quite some time.

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  41. Hi,

    This is just one more comment on your post and on your blog. My name is Ana, I'm portuguese and I0m 28.

    Fisrt of all, let me thank you. Let me thank you for showing me, once again, that life must be taken in perpective. Let me thanking you for teaching me that each day is a true blessing that I've been ignoring a little. Let me thank you for making me see that our everyday struggles always bring the best things. Let me thank you for all this love and peace that fulfilled my heart since the moment I started to read you. It was yestardey evening and I just couldn't stop. And just now you write about wanting to know how you help us. Well, this is it.

    Thank YOU.

    For Bella, I'm praying for her every time I remember her since I met her - which is pretty much every 5 minutes or so since yesterday. And I promise I will include her and your family and closest friends in my prayers from now on, just like I include mine.

    I know you have a busy day and your family to take care of so I'm finishing here. For now.

    Thank you so, so mush.

    Love,
    Ana

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  42. We are inspired by your love and hope for your beauiful Bella. We are never giving up, we are fighting and praying for Sweet Bella and your family. We really love Bella and all of you. We are in there with you thru your journey. Praying for Bella to turn the right corners. You all have so much strength, faith and devotion and are such a loving family and God knows this and is with you. When the doctors are at their wits end and don't know what else to do there is a higher being that takes over to comfort and give the strength you need at times as these. Tim you always go the extra mile for the care of your sweet Bella and your beautiful wife Ang and Ali. It is such a blessing to see such a dedicated & loving family coming together as one thru all your trials and tribulations. Our thoughts and prayers are always with you. We Love Sweet Bella and all of you. Even though we don't personaaly know you, we feel like you are our family. FIGHT BELLA FIGHT, KEEP FIGHTING because you really matter alot to all of us and we will never give up. We continue to pray and keep you in our thoughts always. Take Care and Hang in there. God Loves You.
    All Our Love;
    Myrna & Dwight, CA

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  43. Hi,
    My name is Candice and I read your blog daily. I found it through Tripps blog. I went to high school with Courtney. I read your amazing blog every day as I eat my lunch sitting at my desk at work. You and your family are amazing and your words are wonderful! I pray for Bella every night. I hope the Dr's can figure out what to do! Keep staying soooo strong and positive! I dont know how yall do this everyday. Yall are amazing. I will continue to pray!!
    Love,
    Candice

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  44. Hi Tim,
    I started reading your blog because I read about you on Daylon's blog. I live in Corona, CA and I read an article about Daylon on PE.com and ever since then I was hooked on Daylon. When I read about Bella I got hooked on her too. I care so much for these two little babies. I have a 16 Mo old and reading your blogs makes me appreciate life and my child even more than I did before I knew about EB. Bella and Daylon both finding the cure. I have always had such a peace in my heart that these two babies were going to come back to CA healed! Looking at pictures now I'm sure breaks everyone's hearts...but one day it will all go way! :) Remember that you can only do so much! There's not a day that goes by that I don't think/pray for your baby girl.
    Thanks for sharing your amazing story!

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  45. Good morning! I was one of the first to peep out from behind my cloak of anonymity yesterday and to leave a message instead of being silent. We silent ones certainly seemed to find our voices yesterday!

    How I found you and Bella is the usual ordinary extraordinary route that seems to happen every day in cyberspace. Although I now have two delightful, healthy children, it was a struggle to get them here and, oddly, even years after the event, I feel that infertility trails along behind you long after it ceases to be relevant on a daily basis. I feel wounded by that horrible chapter in my life, which seems churlish given what you, Tim, must deal with every day. But that's how it was and is.

    I found myself reading blogs of women (and occasionally men) who had struggled the way I did. Somehow, a link from one of those blogs brought me to you. I'll never be able to retrace the path but here I am.

    And I'm so glad to be here. There appear to be dozens of us, each compelled to be there with your family. We seem to consist of a mixed bunch, some not so sure of where we stand in the faith department, so to speak, but all compelled to listen as you talk us through your days. Whatever our differences, I feel so heartened by your courage, your enthusiasm, your dark days, your bloodymindedness, all characteristics that are evident in your daughter too. And you write brilliantly.

    There's a silent army of allies surrounding you - I can almost hear a chorus of us, each calling 'Bella, Bella', like a little mantra. She is such a delightful baby girl with such delightful parents and such a wonderful sister. Being part of your lives through your blog is an honour.

    I'm shouting extra loudly for Bella today. A full-throttle, big, bold, from-the-rooftops roar. Can you hear it? Hope so.

    Fondly,

    Jane

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  46. There are only two people I have ever prayed so hard for....my daughter, when she become so sick at 18 with bi-polar illness..a four year struggle to get her mental health managed so she could survive...and Bella. It wasn't until I truly gave up control and turned my daughter totally over to God, that I was able to breath again. My faith has wained many times, but through your writings,Tim, my faith is once again restored. As painful as all of this is, I know God has such a great plan for Bella's life....However this turns out....Bella's journey will live forever. So many lives will and are being touched, so much learning will be credited to her experience. I pray faithfully with tears in my eyes and try to seek the answers as to why not only your family, but families all over the world are suffering for one reason or another. God has the answer and I will stick by his side and I thank you, Tim, for reminding me to always be faithful and never give up. I will not give up on Bella.

    He gives strength to those who are tired and more power to those who are weak. Even children become tired and need to rest, and young people
    trip and fall. But the people who trust the Lord will become strong again. They will rise up as an eagle in the sky; they will run and not need rest; they will walk and not become tired. Isaiah 40: 29-31

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  47. Hi!
    A while ago I decided to start praying for certain people just to see the effect that God has on those peoples lives. I originally found Patrice William's blog about her son Jonah and then have found you and Daylon's blog. I read all three every day and pray. I think I kept reading because of my love for children and my desire to someday have a family (I am 19). I am so excited for Bella's future! It almost makes me cry when you say that Bella will look back and not even focus on this section of her life. She has so much ahead of her! Anyways, prayers for you and your family- you are a wonderful bunch

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  48. Hi,
    I have come to love Bella through your writings. Like you said, we are all one big family. I pray everyday for her and your entire family. I pray that God gives y'all the strength and courage to keep moving forward. I pray that God blesses the doctors and everyone who cares for her with the wisdom and compassion to find the best and most effective treatment for Bella. She is beautiful. It hurts me to see her suffer like this. Bella teaches me to not complain so much. My little aches and pains are nothing compared to hers. Bella teaches me to look outside myself. Every Mass I attend is offered for Bella and other EB sufferers and their care givers. I don't pretend to know what y'all are going through, I just want you to know that you are not alone. I may not be seen, but I'm praying.
    It warms my heart to see such love. Keep up the good work. God holds you in the palm of His hand!

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  49. Why do I read?
    Because you make me a stronger parent. A stronger person. I truly do not believe I could handle a situation like this like you do, with dignity and care. I would be a complete basket case. I worry when my kids have a headache or stomach ache, such normal childhood things. I gain strength from you and remind myself that if you can do it, I can deal with my minor issues. You make me step back and look at the picture, notice how blessed we all are and how fragile life is.

    I keep you in my thoughts thru out the day and check your blog during the AM each day. May tomorrow answers be given to you, may you and your family have strength and wisdom to the doctors.

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  50. I too was happy to see a photo of Bella with her eyes open on Tuesday... and then crushed to hear about what she's going through now. :( My heart aches for her and you and Angelique as her parents. How difficult it must be to witness her discomfort and the lack of medical answers right now. But what a strong, beautiful girl Bella continues to be!! As difficult as things are at the present time, God IS in control, and I have faith that she'll get through it and join "the current" of a healthy, happy life. I pray that her doctors are granted the wisdom to begin solving her mysteries today. (PLEASE let today be the day!)

    I visit your blog to get an update on Bella and pray for a solution to her current challenges. By visiting, I often experience sadness, but I also gain a greater appreciation for my life and the health of my child. I'm also inspired by your tenacity and faith, and the GOODNESS by everyone around the world wishing her well. Bella is cared for by so many people!!!

    Love and healing wishes from my entire family.

    Bonnie in OH

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  51. Hi Tim.
    Your sister Tracy is a very good friend of mine and she asked to pray for Bella and your family.It took me some days to check the blog because it seems there are always important things to do or to worry about, but now I can’t stop reading what you write and all the comments you get. I share the news with my family and my two children (12 and 16) ask about her like if it is one of their cousins. We keep all of you in our prayers.
    I always feel very selfish because I also read your blog because it helps me. Your family is an inspiration and your everyday story, your reflexions, comments, jokes, pictures,etc are a lesson in life.
    Thanks for all that Tim.
    Mariana

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  52. I fell upon your blog by "accident" but was it really an accident for me to find it? I think is was God's plan to add another person who will pray for Bella's recovery. Your family is truley amazing and it should make us all be grateful for everyday that we have been given to be on this earth. Lots of prayers coming your way from Riverbank CA.

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  53. Hi Tim, this is Terry the new Pastor at Harbor. Just want you to know that I am following Bella's progress and praying for all of you. Sounds like those weary medicos can use our prayers too.

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  54. I pray that the ICU team freshens up a bit and pulls up their boots and can see what we all see - that Bella is worth fighting for and that they should not give up on her. Your little girl has won the hearts of so many people, strangers, who are thinking of her and praying about her.

    Tim in answer to your question, I don't remember how I found your blog. But we live in Orange County (HB to be exact) so I felt close. I followed your blog before you came to Minnesota and during the decision process of whether she would go or not.

    And I know that I will continue to follow as Bella gets stronger and healthier so that I can read the post you make in the future that says "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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  55. Lynne, Bob, Jack and BenSeptember 23, 2010 at 10:19 AM

    I come to the blog because I love Bella, and I love all of you. I come because I know in my soul that prayer, in whatever form it takes, is incredibly powerful and creates miracles. So reading, and and being with you, then sending out my prayers is the way I start my day. I come because I hold that Bella will be well -- fully, completely whole and well. That you will hold her hand on the way to school, fight with her over the car keys and curfew, watch her throw her cap in the air, walk her down the aisle. Today, I am holding that the medical team takes on her recovery as if she were their own, treasured child.

    I don't have words for how you have helped me. You remind me every day to be grateful for all the little miracles. You guide me on my own journey of being able to be with exactly how it is, and how it isn't. You school me in being relentless about my intentions, without being attached to the outcome. You make me present to being gentle with myself and the people around me. You are daily proof of the impact one person can have on the world.

    Tim, nearly eight years ago, you coached me through my fear. You helped me create the life I wanted. I never knew that, years later, you'd still be coaching me, and through Bella. I owe my family to you and, now, I'm holding your family in my heart, every moment, every day.

    Love you all, and big hugs to my mani-pedi buddy.

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  56. I am praying for Bella and your family. I honestly cannot remember how I found your blog, but when I did it touched my heart.

    I believe I continue reading not only because Bella is so special, but because your courage and faith inspires me.

    Love,

    Emily in South Carolina

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  57. I am sad to notice that some comments without the word 'pray' are deleted from the list. I feel for you guys eventhough I do not quite understand.

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  58. I honestly don't know why I come but I do, I can't get Bella out of my head! Praying everyday from Texas!

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  59. I found your blog about a montha agon through reading about Tripp who lives in the same parish as I do. Bella is always included in my prayers. She is one of God's precious angels, as we all are.

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  60. I always read about Bella and I pray for her. Our little girl Elly also has EB so BMT is a hope. Love from Sweden! Emelie

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  61. I've never commented before but want you guys to know that we are praying for you. I check Bella's update every morning--first thing. I am so sorry this week has not been a good one, but trust this Atlanta mom is praying and not giving up on your little girl.

    I am waiting with great expectations for good news! This just adds to the miracle and testimony she will share one day!

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  62. Hi Tim and Angie,
    I'm Kristyn, Daylon's auntie .I know some day we will meet because I hear that beautiful Bella is Daylon's future wife lol. I usually dont write on blogs because im not very good at it but after reading today's blog I decided to give it a shot. As i sit hear today like every day with a big lump in my throat....... Your daughter is strong ....she is going to beat this ...she just has to. I will read every day and pray every day for Bella to be well soon.
    Love auntie Kristy xoxoxo

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  63. I'm Sarah and I read your blog every day. Every single day without fail I pray for Bella. Over the summer I worked at a camp for kids with disabilities and I only had access to a computer on the weekends. Despite that, I had a picture of Bella that I taped up over my bed, and every night before I went to bed I would pray for her. It helped me to think about what's really important. I still continue to pray and to hope. I don't think I've commented before but I've kept you all in my heart as best I can. As a family your strength, courage, and faith inspire me. There have been many times that difficult things in my life have caused me to question my faith, but you face these difficult things and refuse to quit, refuse to give up the faith. I figure that if you, with so many odds stacked up against you, can forge forward, then there is no excuse for me giving up.

    Please know that we are out here praying for you, loving Bella, and standing strong as best we can. Thank you for your light and your faith. I am truly blessed to be part of your journey.

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  64. Hi Tim and Angie, I'm kristyn Daylon's aunite. I read your blog every day. I cant wait to meet you guys as i hear that your beautiful Bella is Daylon's future wife lol. I sit here with a lump in my throat while reading this blog ( thank you Tim for your wonderful writing by the way) . i have faith that Bella will beat this ...she is a strong little girl. And some day i will here her 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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  65. Dear Tim,

    I am sure Bella will be fine quite soon:). I wish you all the Best.

    Claudia from Portugal

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  66. I anxiously await your updates each day. My heart breaks for Bella and all of you. For Bella because she is uncomfortable and for all of you because you have to see your sweet baby struggle. Let us lift you up and carry you through this difficult time. I hold you all in my heart each and every day. Prayers and love from L.A.

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  67. Just letting you know i found your blog through Jonah and have been praying.

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  68. I am not sure how I came to see Bella each day through your blog. It must have started from following Tripp's journey. I feel EB children are special children with a special gift. My husband and I adopted a child with EB from China. He has a subset of the disease that seems to be getting better with age and yet he has that same spirit and that same fight in him that EB children seem to have. They are survivors through and through and you as Bella's family are survivors. Although a tough fight, it is yours to fight and you are doing it with such grace and courage. I applaud you and I can't wait to read on your blog the day that Bella comes home from school one day and says, "one day I had this rare skin condition, I went to the hospital and now it is all gone."

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  69. Dear Ringgold Family,

    I am also a blog follower who has never posted, I have followed your blog for the past 3 months daily. Your strenght,faith and devotion to your family is truly amazing. I find myself thinking of Bella, Daylon, Jonah and Tripp many times throughout the day and saying a prayer for you. What you and the EB families go through on an hourly basis most of us will never experience in a lifetime.

    I live in ND and have started asking my friends here to help me put together a donation package for you and the other EB families at the RMH. I know it is easiest for all of us to donate money to the house and let them put it to their best use but if there is anything at all that you need as a family please let me know. I feel in my heart that if my friends and I can reach out to you in this very, very small way it might ease the stress of one day for you. I can't imagine the stresses lying upon your shoulders at night.

    I will lift your family and all the EB families up in prayer tonight specifically for strenght in the doctors to find a path to success for your BMT procedures.

    God bless and keep you healthy, strong and joyous in his love.

    Holly in ND

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  70. i am always praying for bella. i always check your blog! your family is in my prayers everyday! -betty

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  71. I came to your blog from another blog of a child or baby with EB. It might have been Sam's or Jonah's. I think I found yours and Daylon's at the same time.

    I'm an RN by training, and I've always had a heart for sick kids. My kids have gone through stages of praying for a whole list of sick kids whose parent's blogs or carepages I've been following. I have Bella on my heart and have been praying for her every time I read.

    What does she give to me--a realization that we have hope. Every day of life we have hope, and that through the Lord who gives us strength to carry on.

    Blessings to your family,
    Karen (from Canada)

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  72. Hi, I stumbled upon your blog by accident. I'm a nurse, so of course the diagnosis caught my eye. I had only taken care of one person with that dx, and, that was an adult.
    Bella's story tugged at my heart. My heart aches for her. I can't imagine how much pain and discomfort she is feeling, or her family. I think about her and Daylon every day. They are in my prayers.
    I pray that God watches over your family, and takes special care of Bella.
    Most of us don't know how lucky we are to have healthy babies that we are given the pleasure of watching them grow up. One thing I've learned as a nurse, is that God gave us something that lets us not remember things that happen or go on when we are extremely ill. Most of my patients that I've cared for over the years don't remember what happened or led up to their illness or accident. I pray that is the case with Bella. A little girl shouldn't have those kind of memories. She'll remember all the love around her.
    I commend you for being so strong and looking out for her best interests, even though the outcome may not be what you want, but what is best for Bella. As a critical care nurse over the years, I've laughed and cried with patients and families. I've never cared for children, I don't know if my heart could take it.
    Just know that God is holding her while she is so very ill. Your family is in my prayers every night.

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  73. I read about Bella every single day. It is in the short list of blogs I follow. After I bring my 4 year old home from pre-k and settle her into some quiet time and put her baby brother down for a nap, I grab some internet time. I feel so invested in Bella, which may sound crazy I guess. I obviously don't know her, or the rest of you. But I have been reading since the beginning and I honestly cry for her on bad days and feel elated on good days. It hurts my heart to see her so puffy and uncomfortable.

    I pray for peace and for healing. Good luck on your journey, Ringgold family.

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  74. I sit here with tears streaming down my face...trying to think of my reply. I love that so many have left a comment already. I was already on my computer this morning, checking for Bellas update. I had to turn it off and come back as the tears flooded my eyes then. I went I cried and I begged to God to please take care of Bella...to turn things around for her. When I first came here to Bellas blog (I came across it through Tripps blog) I saw the face of a little girl that was about the same age of my own child. I began caring what happened to her...wanting so much for this part to be over and for all of you to be home...safe. I care so much for Bella and that is why I continue to come here everyday. Would it be easier to stop coming? Sure. Do some people in my life not understand why I care about a child I have never met? Sadly yes. But I know that if they took a moment and "met" Bella they would care too. I also know if I did stop coming here that would mean I dont have hope...and my heart overflows with the hope of a wonderful future for your sweet (or can I call her OUR sweet) Bella. Prayers as always (every night without fail).

    Denise WI

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  75. The only thing I can add this evening is an "AMEN" to the beautiful prayer that you voiced in this post. That will be my prayer today as well. I hope your precious family is buoyed by the love and support that I see as I read the comments from today.

    I suppose I keep coming back to your blog because I can't wait to see that sweet face of Bella's with eyes open, swelling gone, and a smile on her lips. I want to be witness to a miracle. Your writing is also so compelling and, more often than not, I find myself being encouraged and uplifted. What a gift that you are able to do that even amid your struggles.

    Praying for healing and peace in your hearts,

    Susan
    A friend in NC

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  76. I must admit, I am catching up on your posts. I am very behind but, you all are not out of my head. Each and everyday I think about you all and hope you are doing well. Your fighting spirit in all of you drives me. Your courage to stand up to the medical team and fight for what you know is right gives me the courage to do the same for my son. He just received the group of shots he got last year when this all started and he had a red welt over one site and they blamed it on the bandaid. I fought hard for them to admit that it possibly could be the shots since he had bandaids on both sides and we had NO issues until he received this group of shots when he was 8wks then all hell broke lose.

    You all are amazing. I can't say much less then that.

    Lots of love,
    Sarah
    Virginia

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  77. I am praying so hard for your beautiful daughter to regain her health. I have learned a lot about life through Bella's journey and through your faith that she is truly in God's hands. I will continue to pray for your sweet precious daughter. I hope that tomorrow brings invigorated hope, positive energy, and some answers.

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  78. I am praying for your family in North Carolina! I came across your blog from Jonah's blog. I think and pray for you guys often. I know that the Lord is going to use this experience to help advance HIS kingdom one day!

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  79. I found your blog through Jonah's blog and check on Bella every day. I pray for Bella and your family each day. Thank you for sharing your journey with us.

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  80. I found your blog via Patrice's blog about Jonah. EB is a horrible disease and I pray that one day there will be a cure. I am inspired by your faith as a family and each night after reading your update, I say a little prayer for sweet Bella. Hoping she turns the corner soon so that she can go home to be with her Mommy, Daddy, and big sister! Positive thoughts and prayers from Mary in Montana

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  81. I have been reading your blog since Bella's transplant. I found your family through Jonah's website and read your update every morning. I ache for that little girl and everything that your family is going through. Each morning I keep hoping for her to turn around. You and your wife are such dedicated/determined parents with such a fight in you. And to balance all of that and keep a 4 year old happy is just amazing to me. I wish/hope/pray for Bella's health and wisdom for the doctors. God bless all of you

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  82. Bella.
    Pure. Gentle. Spirit.
    Living proof of God's enduring love.

    There is always, always, ALWAYS hope.

    ~Noelle

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  83. I have been following since both Tripp's and Jonah's families mentioned you. Praying for wisdom and strength for Bella's whole team.

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  84. Beth Franzosa and FamilySeptember 23, 2010 at 7:17 PM

    I've never commented before, but I can't tell you enough how much ya'll mean to me and my family. I learned about EB through that documentary about the man from England (the boy whose skin fell off). Ever since, I've thought about the disease now and again. About 6 months ago, I decided to learn more about the disease and found Patrice Williams' blog about Jonah. Through her blog, I found yours about Bella, the Edlings about Daylon, and also Tripp's blog. I don't know why, but each of your families' struggle just connected with me somehow. It's hard to explain. I am a 30 year old mom of 2 (3 year old boy and 18 mo old girl) and am happily married in Cincinnati, Ohio. Knowing we have a great EB clinic at Cincinnati Children's makes me proud and sad (that it is so close here for some, but so far away for some others). I started reading these blogs morning and night and I have found that I consider ya'll almost a part of our family. I just HAVE to know how Daylon, Bella, Jonah and Tripp are doing. I work at a Catholic college and I can't tell you how many people I have told about Bella and her EB friends. My whole family prays for Bella, Daylon, Tripp and Jonah on a daily basis. We also pray for all other people, especially children, who have this horrible disease. When people ask me why I care so deeply for you guys, I am sort of embarassed - I mean, I don't even know you guys. But I just have this overwhelming urge to want to hug Bella, Daylon, Tripp and Jonah and just be there - help ya'll (as parents) out, do small things to make a difference. I can't do that - but what I can do is think about ya'll, pray, and spread the word about EB. I hope you know that while I hate that ya'll have to suffer with this horrible disease and watch your children go through this agony, I feel so blessed that I have found your blogs and am able to peek into your lives. I feel so lucky to be able to pray for Bella, Daylon, Tripp and Jonah every day. I just wish I could do more. I probably don't have to say this - you get it all the time - but please know that even though we are strangers, you and your family are so loved by me and my family. My son, Andrew and daughter, Emily, know Bella's picture and they love hearing me tell them a (of course, modified) update on how Bella is doing. We also pray for all of the doctors, nurses and medical professionals that work with Bella, Daylon, Jonah and Tripp - for guidance, kindness, patience, wisdom, and hope. I just know in my heart that Bella will one day, like you say, shrug her shoulders and say "yeah, I was born with this disease and got really sick, but now I'm better and I'm okay".

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  85. Tim , Please know I think of you all and pray for all of you. Love, Terri

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  86. Tim,

    I also came to your blog from somewhere out there, just last week. I was instantly compelled to understand Bella's journey, and stayed up late two nights in a row, reading a month of posts each night. I found myself drawn into the mystery of science and faith, which you walk every day. You so generously allow strangers to walk with you, in what could be a very private time for your family.

    You asked what "we" get out of your blog? I've thought of that question all day, but I still don't have an answer. I think you give us the chance to see our humanity, how powerless we are compared to our God. I do believe that he knows Bella's secrets, and is gingerly holding her hand, letting the humans around her learn from her trials. She is so young, and so strong, to carry the weight of EB for all of the kids who come after her.

    I have a chronic medical condition, one that causes constant nerve pain, and is not well-understood. I surrounded myself with good doctors, expected excellent care, educated myself, and fought every day for 4 years. I have now been in remission (pain-free!) for a year. From the beginning, I wore a medical bracelet with two charms: faith and hope. I never asked God "why me?," but trusted He'd be with me every moment. I wouldn't choose another path if I could; I know that I was meant to walk THAT walk.

    With that perspective, I pray for Bella as she enters my thoughts through out the day. From this side of Heaven, I don't understand why He makes sweet babies suffer so greatly. But I completely believe He has a reason so grand, my mortal mind can't come close to understanding.

    Thank you for sharing Bella with us. You are her warrior and one day she will understand all that you have done for her. Stay strong!

    Karen Steiner
    Denver, CO

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  87. I found you by following all of the other EB kids who are trying BMT. I also follow several other children with medical needs and several other who do not have medical needs. All need prayers. And that is something that I can do for each child as I read about how they are doing.
    God has a plan for Bella. I do not know what that plan is. She is living that plan today right now. Thank you God for allowing your plan for Bella and your plan for me to cross paths at this time.
    Blessings. sg-KS

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  88. I am obsessed with reading the EB blogs. I can't imagine what you as parents go through. When I found Jonah's blog I began reading because I was curious. Then as I continued reading I was so sad, I would sit at my computer with tears running down my face reading how parents can take care of their children so strongly when so much pain is involved. Now I read because I want to see how Bella is doing. Praying that today was good, praying that this horrible disease will be cured.

    I hope the medical team will have some answers. Maybe this new BMT doctor will be House! Or a fresh perspective and the answer to many prayers.

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  89. Hi,
    I too found your blog though other EB blogs, and follow because I too want to know how Bella is doing. While I'm not religious, I think about Bella often. I've learned alot about EB though your (and others') blogs.

    On another note, from the medical perspective, I am a physician, and wanted to add a thought. I agree you need to measure blood pressure, especially while she is on pressors. Otherwise, you won't be able to titrate them on or off. So, have someone (who does A-lines frequently, sometimes anesthesiologists are the best) try on her left wrist. I'd suggest that if they cannot feel her pulse (the typical way of placing an A-line is by feel) to use an ultrasound. Alternatively, a line can be placed in her femoral artery, or occasionally in the foot (dorsalis pedis artery). I hope this is helpful.

    She is going to get better!
    -jane

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  90. You ask a great question, why do I follow your blog? I come here daily, almost, at least 4 times a week to check in on Bella, I don't know you, I don't even know anyone with EB, so why do I come? Honestly, I'm not entirely sure.. I do know it's a complicated answer that can be answered in part, by telling you 2 things about myself. 1. My husband and I are currently trying to have a baby. 2. I work with severely disabled children as an OT assistant in a private school. OK, 3 things, 3. I worry. You put all of that together and well, I needed an outlet. I started reading blogs about kids with CP and Autism and I ended up reading Jonah's blog somehow.. and so EB got added to the list, and cancer eventually, too. People tell me all the time that I should stop, it's not healthy, they say, to expose myself to all these horror stories when I'm trying to become a mother.. but I say how can I not? I mean, I already know these things exist, I understand they are rare, and I find comfort in knowledge. But none of this is the real answer to your question.. because what all those people who tell me to stop reading don't understand is the joy that happens here. They don't know stories like Baby Daylon's journey from having an DNR to where he is now or the miracles that we're about to watch unfold with Bella as she makes her own amazing recovery. There IS JOY and cause for celebration. There is community, even among strangers, there is support. This blog gives me great comfort because you are out there, struggling, but still celebrating the small things, still believing, still cheering. Thank you for sharing your journey with us.

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  91. I've never commented before but I have been reading occasionally for a few months. I have found myself checking in on Bella each day recently. I guess I just have a heart for praying for those in need. Especially children. I am so impressed with your writing and having the energy to post when I imagine the days must be crazy. I'm praying for Bella. She seems to be a mystery. As you said tho, she is no mystery to God. I admire your faith and I am praying for a renewed spirit to fight for Bella when needed. I am praying for your family and will try and comment to let you know I am reading and praying for healing!

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  92. Tim,
    Your request was received quite well I would say. Wow! I am moved by human being once again and want to say thank you to everyone for your courageous sharing! This is causing a ripple effect on the healing of the planet!
    Bella is healing the world!!!!
    You know why I follow....because I love you.

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  93. Adding my prayers for Bella.

    Like many others, I haven't commented before, but I log on nightly, waiting for the newest update on Bella. I found your blog through one of the other EB babies blogs. As for why I am drawn to Bella's story. . . I am moved every time I read by the strength of your little girl and by the power of your love for her and your faith in God. I work as an attorney on child abuse and neglect cases and I see far too many families torn apart by bad choices and parents who have given up hope of a better life. Then I read Bella's story and see a family that will stop at nothing to fight for a better life for their daughter and never stop loving her and believing in her. Your daughter and your family renew my hope and my faith.

    Thank you for sharing your story even during your most difficult times. I will continue to pray for Bella and for the miracle that God holds in store for her.
    -Jennifer in Davis, California

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  94. Hello Ringgold family!
    I have been following your blog for quite some time (before the BMT) and I have commented a few times. I don't remember exactly how I came to your blog but I am sure it was through another EB blog as I follow many of them.
    I come here because I am BELIEVING in a healing for all EB children. I follow your family each and every day. I cry with you, smile with you, pray with you, have never ending faith with you. I KNOW one of these days very soon there will be a change in her condition and I am looking forward to it!!!
    I love your family. Thank you for sharing your journey.

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  95. I rarely make comments on blogs but today I want sweet Bella to know that Kim in Utah is praying for you and your whole family. Keep fighting Bella - you can do it.

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  96. I have been reading for months, ever since Jonah's mommy posted about the transplant, but have never commented. Why do I read? Because I see the hope and strength you are giving your daughter. Because I am a nurse, and every time I read I learn something new about helping families, listening to families, not giving up on my patients. Every time I read I vow to be a better nurse for every one of my patients. You would be amazed at some of the patients I have seen who no one ever thought would leave... and who walked out with a smile. Miracles happen. I see them all the time. Today I will pray for peace for you, that God will give you strength to keep believing. I pray wisdom for the doctors and nurses that new ideas will come to mind. I will especially pray for healing for Bella. Complete healing that denies any explanation except that the world was praying for her and her family was believing in and fighting for her and God was healing her.

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  97. Lynne, Bob, Jack and BenSeptember 24, 2010 at 11:29 AM

    Sweet Bella -- Cried and cried and cried as I read today. Tears of heartbreak and worry. Of anger at the doctors. Tears of love and hope. Tears of joy at the news of just the medicine you need!

    But mostly, tears of awe and inspiration at the amount of determination and heart your small body can hold, at your Dad's faith and willingness to share himself and this journey with such honesty and generosity. At the thousands of lives you are touching and the difference you are making around the world. Because of you, moms are present to love, people who are struggling are present to their strength, medical students are learning to actually care for their patients.

    Because of you, we are all finding hope. We are all seeing the power of love, of intentions. You are a miracle, baby girl, and we are lucky enough to bear witness to it.

    Keep fighting. We're all creating these miracles with you and we all love you.

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  98. Praying for you, Bella and your whole family! I am amazed everyday by your strength, faith and knowledge!

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  99. I have been following your blog for about a month now, I am a nurse, and I have seen very many Dr Glooms and Dr Dooms, but with every bit of medical technology or explanations, nothing replaces human compassion, prayer, faith, and most importantly HOPE. Everything happens for a reason. I was recently chatting with a pediatrician , she was unhappy that I would give patients hope over their child's condition, saying that people then get upset about their children's condition because it doesn't go well. I thought about that for a while and then came to this conclusion:

    I would much rather live in a life filled with hope and faith that things will be good, and a child will do good, and grow and prosper then to live in a life where "they" (the medical community) say it is impossible, they will mostly likely be damaged, or even die... ect ect. because what kind of scary world that would be.

    So please tell Bella its not impossible, she can do it, she can prove all those doctors wrong, she can beat the odds. I have hope for her, I have faith for her. Ultimately God has a plan for her and he is holding her right now even as I write this.

    Thank you so much for sharing your story, we continue to pray for your family and Bella.

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