Saturday, October 9, 2010

October 9: Day +99



Bella sneaking a peek at Mickey Mouse Clubhouse with her buddies...


Ali and Elle's big sister Chloe making pumpkin cookies this morning...

Heaveno!

We're watching "Over the Hedge" Tonight. Every time I walk to the hospital, I see about a half dozen squirrels, and I always think of Hammy the squirrel!

Good day for Bella, good day for us.

Pressures good, no fluid given, pressers held. Sedation weaned again. Vent weaned again.

Bella continues to baffle every doc on her case.


There is some not-so-hot news in that Bella's cultures came back positive for two different bacteriae. Good news, we started vancomycin yesterday which will treat both bugs fine.


Ali was too distracted by Mickey Mouse Clubhouse...


We sat Bella up while Ali was visiting today so she could see her baby sister sit up for the first time since the beginning of July. Man, that feels s-o l-o-n-g ago. Outside of reading to her, we let her rest today. Your prayers were right-on calling for rest. Before I left the hospital, I urged the attending ICU doc to not allow the residents to wean her pressers. She was in a good spot, so just let her be. He thought that was fair enough, and agreed to keep them away from her! ;)

We took a drive out to Stillwater again today and played in Pioneer Park overlooking the beautiful St. Croix river and downtown. We took the scenic route up past White Bear Lake and winded along single lane roads through the hills, ponds, lakes, orange and yellow trees, and fields. It felt so good; we felt so far away from that little room... free to recharge.





Tomorrow will be another quiet, rest-filled day for Bella. Thank you for all of you sharing Bella's story with your friends and family. We received a lot of contact from new readers today, and for that extra support, we are so very grateful. Also, thank you to those of you who have shared stories of triumph over a tremendous medical adversity. If you have a story like that, where you or someone you know beat the odds, please share them with Bella. I want her to hear about all the other amazing boys, girls, men, and women who beat the odds just like she is, so she knows she isn't alone facing such a long, uphill climb.

Where Bella is at right now in her fight, I can tell you that the docs are out of ideas. Bella is holding her own against all odds, and only because of the energy we (you all and us here) and her heavenly father feed her. I get the unfortunate sense that, with the exception of Drs. Tolar and Wagner, the rest have just given up. I hope that we can 'win over' her newest BMT doc, like we did with Dr. D... We all need to just keep watch over Bella, continuing to wrap her in healing prayer and positive intention. It worked. It works. It's working.

As I walked to the hospital this morning, I felt SO COMFORTED by all your support, and by the remembrence that God really is holding all of us in the palm of his hand. Even in the midst of my pain and suffering, he is still there, holding me. He can bear all my pain, it's okay. After all, if God is the creator of all things, he created pain, too. Why? Well, my guess is that pain is kind of like a volume knob. If we can get out of our own will and way, we can hear his whispers guiding us. When we get in the way of our selves, God has to turn up the volume a little. Sometimes, though it is not necessary, we need to experience pain to really listen in on the lesson. It gets our attention, let's face it. We don't like it, we think it's cruel, we want to avoid it, but what if we can see pain as a chance for a deeper understanding, an opportunity for breakthrough in what we think is possible? If you've ever lifted weights, you know the feeling of pushing through that tenth repetition, despite the pain, to reach a new personal best that was once impossible (I'm not even sure why I am writing about this, it is just coming, so I'm letting it flow).

So, I really feel held in the midst of this journey. Something magical is happening here despite the pain. By not giving up, Bella has overcome respiratory failure, renal failure, veno-occlusive disease, a dynamic left ventricular outflow obstruction, left ventricular hypertrophy, mitral regurgitation, capillary leak syndrome, a blood clot in her kidney, oh, and EB. By not giving up, we have witnessed and testified it. We have fed Bella all the love and energy we possibly could. We don't know how we do it, either. If you told us we'd still be standing tall on the eve of day +100, having spent the past 98 days in the ICU, we would have NEVER believed you. We now know ourselves as so much stronger than we ever gave ourselves credit for. We would never have known how strong we were if we weren't pushed so far past what we thought was possible... what we could handle.

God sees us all as the true potential we are. He does know what we can handle. It is we, in our arrogance, who think we know more than God. It is we who think we know what is and what isn't possible... what we can and cannot do. Thank God he doesn't listen to us.

How many times do you think you fell on the way to learning to walk?

Would you honestly try that hard now as an all-knowing adult? Or would you have given up, saying after the 30th time you fell on your butt, "Maybe this walking thing just isn't for me. I just wasn't meant to walk obviously." Or worse. You say, "It must be God's will that I can't."
How would we presume to know God's will for us? This is one of the great lessons I'm coming to learn through this journey. It's been a humbling kick in the teeth, but one I needed. I pray that you don't have to get kicked so hard to learn whatever lessons you are here to learn.

So, what have you been saying to yourself, "That's just not possible for me." Really?

One day, Bella WILL say, "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away." I dared to say that within days of her birth, not knowing whether it was possible or not. I left that part up to God, for all things ARE possible through him.

What are you willing to leave up to God, in order to make the impossible possible?

God night.


Fall at the RMH...


Flood waters at the shores of the St. Croix...




49 comments:

  1. Yay for a nice quiet day! Thankfully you got the antibiotics started early, and that Bella already seems to be recovering from the infection. I have taken care of many babies at work in the NICU who have beaten all odds, and have been able to go home with their families. Keep going Bella!

    Jess
    Chicago, IL

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  2. Huge praises for another good day! Rest, rest sweet Bella! You are strong precious girl and you have the world standing behind you! I am praying for a night of good rest and another day of healing and good reports! :) We love you a lot, Bella!

    The scenery is beautiful there! Enjoy those wonderful colors of fall for me! Do you have music playing for Bella? I just wondered if maybe we could send her some baby praise music? :)

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  3. Bella,

    I'm glad you had a restful day. Keep at it little girl, you are doing so good, even if the doctors are baffled!

    I have been fortunate to never face major medical problems myself, so far. My son Ari was born early through, at 36 weeks, and had a hard time in the beginning. He spent the first 9 days of his life in the NICU. Hearing stories of others' premies, I can look back and know we were lucky it was only 9 days, but it really felt like hell on earth at the time for us. He overcame all of the difficulties and managed to quadruple his birthweight in his first year; now at 15 months (today!) he is meeting and/or exceeding all of his expected developmental milestones. We are so fortunate.

    My method of meditation/prayer often involves poetry or music, so that is why I have shared lyrics and poems with you. Here is another of my favorites that came to my mind recently while thinking of you:

    "The Waking" by Theodore Roethke

    I wake to sleep, and take my waking slow.
    I feel my fate in what I cannot fear.
    I learn by going where I have to go.

    We think by feeling. What is there to know?
    I hear by being dance from ear to ear.
    I wake to sleep, and take my waking slow.

    Of those so close behind me, which are you?
    God bless the Ground! I shall walk softly there,
    and learn by going where I have to go.

    Light takes the Tree; but who can tell us how?
    The lowly worm climbs up a winding stair;
    I wake to sleep, and take my waking slow.

    Great Nature has another thing to do
    To you and me; so take the lively air,
    And, lovely, learn by going where to go.

    This shaking keeps me steady. I should know.
    What falls away is always. And is near.
    I wake to sleep and take my waking slow.
    I learn by going where to I have to go.


    Best,
    Cara in Tucson, Arizona

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  4. As a parent, one NEVER gives up on their child, despite seemingly insurmountable odds. No doctor, no "dose of reality", can change that piece of the parental condition.

    Bella has become "our" child in so many ways - you have so bravely chosen to share her story, and that of your family as you travel it with her - with all of the pain, sorrow, and joy included in often a very stark way. In turn, we have taken her and your family into our hearts and you have become part of us.

    So, as someone who considers herself a member of Bella's community of online family, know that - like a parent - I (we) will NEVER give up on her!

    So happy for your good, restful day Beautiful Bella.

    Kirstin
    San Jose, CA

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  5. Sweet Sweet Bella! I am glad you had a good day today!!! I thought and prayed about you a lot! Im glad your mommy, daddy and big sister got to go to the park today =0) Soon you will be able to join them! I took my Bella to a pumpkin patch today... it was fun! A baby goat thought Isabella was pretty cute and was trying to kiss her! LOL Isabella didnt think it was too funny.... I found another poem that I wrote around the same time as the Butterfly poem that I sent you. I think it's pretty fitting as well =0) Its called "I Will"

    Thank you for this brand new day!
    Im looking at my life in a brand new way!
    With courage and strength I will go on, I will make it through...
    I'll reach for the stars, you'll make my dreams come true!
    I wont give up now... on my life,
    no matter what happens, I will win the fight!!
    Im ready to live
    Im ready to shine
    Im willing to jump for the first time!
    I am ready!
    Ready to live this life of mine!!

    sweet, sweet Bella.... YOU WILL WIN THE FIGHT!! YOU WILL BEAT THIS! YOU WILL GET BETTER!!! You just have to take it second by second, minute by minute, day by day! I believe in you!!!

    All my love,
    Sarah in Colorao

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  6. Another song for Bella
    Chorus: Let go of the shore,
    and let the water carry you.
    Let go of the shore,
    float into the mystery... (Repeat)
    You have all you need,
    it’s all inside of you.
    Close your eyes and breathe,
    and know that you are safe.
    *Chorus*
    No need to make a plan,
    your heart will be your compass.
    Just lift your sails in faith,
    and trust that you will arrive.
    *Chorus*
    Vicki

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  7. I found your blog through another blog and have been reading about your story all day. My 4 year old daughter Bella saw pictures of your Bella and wanted to know all about her. I told her the 'simple' version (which was quite difficult) and said that she needed prayers. With that, she bowed her head and started to pray. Hope you felt them:)

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  8. Another good day...YEA Bella. So sorry to hear that infection is brewing though. Glad they started the antibiotics early. It was good to see those eyes peek open today and to see you sitting up. Get a good night of rest and healing.

    Bella, I have a little grandson that just turned 1 year old last week...the amazing part of his story is that his birthday was supposed to be January 20th not October 2nd! He was born very early and very tiny. For a long time the Doctors ordered a DNR status for him because he was struggling so. But you should see him today. He is a very healthy and happy little boy...and we are so happy that he was adopted into our family. He's our gift from God. Bella, you can make it home too, just don't give up little girl, keep fighting. We will all dance when you get to go home! Can you just imagine it Bella? So many people dancing all over the world. You go girl!

    I'm glad to see that your Mommy and Daddy and Ali got out to enjoy this beautiful day...and such a beautiful spot. My husband and I visited Stillwater last October...breath taking colors!

    Sending you all (((hugs))) and prayers from South Dakota. Beth

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  9. Wow, two pictures with your eyes open and two good days!!! Get some rest, keep fighting and stay strong Bella!

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  10. YAY Bella!! Good job on another strong day. Geez girlie, you NEVER cease to amaze me.

    I want to tell you the story of my good friend Nick. Approximately 6 years ago when he was about 25, Nick was in a horrific car accident on the fwy. He is about 6ft 7in and at the time about 300lbs and he was driving a little Honda Civic. All the traffic had come to a sudden stop in front of him and as he came to a stop as well the huge Ford F350 behind him wasn't paying attention and the driver slammed into the back of Nicks Civic going about 50 mph. The force was so strong that the entire back end of the car was gone and the metal in the head rest had been lodged in his brain. Miraculously, a pair of off duty paramedics were on the fwy at the same time as the accident and they pulled over to help him. They weren't sure if he was going to survive but they stablized him anyways and made sure an Ambulance was called. Well, Nick was in the hospital in a coma for the next 4 months. All of the drs told his family that he wasn't going to make it and that IF he did he would be a vegetable forever and probably never regain conciousness. His family remained strong and he had lots of love and prayers surrounding him and he woke up from his coma 4 months later to a "new" life. At the time of his accident his wife was pregnant and when he woke up he had a new baby boy. Now 6 years later Nick is doing AWESOME!!! He has 2 sons now and is COMPLETELY NORMAL!! The only side effect is that he talks a bit slower than before but he's as sharp as ever!!

    Bella, I am telling you this story because I want you to know that even though all the odds seem to be stacked against you and the drs are out of ideas, that doesn't mean that GOD is out of ideas and that he has given up on you. God has the final say and I have faith that he will get you thru this. Remember, I've told you before that this is just a trial and you will get thru this and be able to inspire so many other beautiful people thru their trials. YOU INSPIRE ME EVERYDAY!!! Stay Strong Sweetheart.

    Tim, Ang, and Ali,
    I love the pictures from your adventure today and I'm so glad you guys were able go out and have a relaxing day. I love the pictures!! So beautiful. Take Care.

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

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  11. heaveno!

    sweet bella, glad you are resting comfortably tonight. your daddy posted some great pictures of today's adventures with your mommy and ali. my favorite is the one of them going down a slide! keep resting sweet bella and know that there are people all around the world who love you!

    tim, i felt like you and i were having a personal conversation tonight! god does know what we can handle and we should never presume to know better than him! "jesus looked at them and said, 'with man this is impossible, but with god all things are possible."-matthew 19:26

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

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  12. Hiya Bella,
    As I write tonight I am in awe of your spunk. I work in a hospital with adults undergoing BMTs everyday. I have seen patients and their families beat unbelievable odds. I have had the opportunity and honor to be a part of their lives in large and small ways as I bring music to them to assist them through their hospital stay. Some of their stories mirror yours, lots of ups and downs. I have had days where I leave not knowing what I'll come into the next day only to find the patient is sitting up, wide awake, and talking when I arrive. Keep up the spunk kiddo!

    You are never far from my thoughts, little one.

    Piper - Phoenix, AZ

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  13. Dearest little Bella,
    I work in an Operating Room and I have seen, over the past 35 years, many, many patients who have faced seemingly unsurmountable odds. Some of them have good support systems and others do not. You, my dear, have an unbelieveable family...not only Ang, Tim and Ali, but, your extended family around the world. We feel each heartbeat with you, breathe each breath with you and pray each day for your strength and healing. Please continue to show everyone how strong you are and how much you want to run and play with your big sister...and your Mom and Dad. My thoughts and prayers are with you every day. I hope your tomorrow is as beautiful as you are.
    Wendy - Napa, CA.

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  14. Sweet Bella! I am glad you had a good day.

    I'm sending to you a big hug and all my prayers

    Sandra from Portugal

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  15. Hey, Baby girl. I saw those eyes open for the picture. I think you would have smiled if you could. Sounds like you had a pretty good day, nothing too exciting. That's the way us grown-ups like it.
    You get lots of rest tonight, so you can come back in the morning and fight some more. You show them docs just what you can do.
    Your friend, Daylon is coming right along. You should see all the hair he is getting. Wow.
    Little Elle, like you, isn't feeling too good. I've been keeping tabs on all of you. Not being able to work right now, because I hurt my back, this makes me feel closer to nursing.
    I'll come back and check on you tomorrow night. You sleep tight. Those little prayers are going up to heaven for you and your family, and for your friends, Daylon and Elle. Jesus loves you and is taking really good care of you. Your friend, Carla Spradlin, Portsmouth, Ohio

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  16. Dearest Bella,

    While on a rough, bumpy road, remember that when God is in control and at the wheel, the road will still be rough and bumpy...for He doesn't change the road...but take peace in knowing that He is at the wheel for you. Let Him drive you down that bumpy road. He loves you..as we all do!

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  17. Here I sit at the hospital Bella, and all I can think of is you in your little bed, Hoping and praying for continued improvement for you. I pray for you to open your eyes and smile at your mommy and daddy, and tell them how much you love them. I know if you could you would tell your Daddy and Mommy, how much it comforts you when they read to you. How much strength it gives to you. As I have been for weeks now, I'm sending you all the energy of goodness and healing I can. Beat the odds Bella, prove those doctors wrong.

    Tim,
    I was thinking, at the hospital where I work, (I work in L&D) we do a lot of skin to skin contact with the babies and their momma's. It does miraclous things for those little guys, It even brought a baby back to life in England. I dont' know if its possible with Bella having EB and a million other things going on with her, but do you think you guys could actually hold her? I just feel like if it is possible it might do her a world of good. just an idea of the power of touch.

    Lisa
    Houston, Texas

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  18. Hi Bella, my little 'road less travelled warrior'! It's so great to see you have a little sitting up time. Have a calm day and night if you can!

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  19. Bella,

    So happy today was a relaxing and healing day for you - one day you will come out of this tunnel shining so brightly. Keep on proving those doctors wrong little one!

    Love from Boston
    Tamar

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  20. Bella,

    I told you I believed you would shock the doctors! Keep on keepin' on girl! Healing is in His hands. http://www.youtube.com/watch?v=5sG94EKGDcU&feature=related

    Kari
    Minneapolis

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  21. Hi Bella!
    Its Angela O from Tampa except for the last two days I have been praying for you from Puerto Rico. Its very humid here, a lot like summers at home, and warm too. It's also beautiful, but that is natures way isn't it? Just the beautiful changing leaves in MN right now, just like beautiful Bella. Today I am leaving on a boat so my prayers for you will be in motion from the ocean for about a week, pretty cool huh? Sad news for me is that I won't be able to check in on you for a whole week! But I know that when I check back in on you, you will show me yet again how positively remarkable and unstoppable you are! You atte doing so great bella!
    So your daddy asked for stories of our own survival, so I will leave you the story of me and my daughter Grace.
    Gracie was born with a kidney defect that was fixable, but when they surgically fixed it she caught a terrible infection. The kind of infection that grown ups some times can't fight and little brand new babies have an even harder time fighting. Gracie fought to beat that infection for two months and won! Now, its all part us, just like all of this will be past you one day. A few weeks after Gracie was feeling better, it was my turn. I developed an acute form of leukemia. Its the kind that if I didnt get to a doctor fast, I would have died within a few weeks. You see God gave me a friend that is a nurse, not on accident, and she noticed something was wrong and got me medical attention in time. It has and continues to be a long road for recovery for me too Bella. But its been a beautiful road, full of awakenings. Ones that I see your mommy and daddy also awakening to and they will pass that gift to you as you get older. You see, you are a great teacher Bella and in turn, they will teach you too. I too learned that I have no limitations in Gods eyes. I used to believe that I was destined to be heavy, I woke up because of my experience and have lost 130 lbs. I am now overcoming other huge obstacles and I know I can do it.... Just like I KNOW you can beat this too Bella.
    I will be thinking about you as I am filled with the energy that nature gives me, I plan on bundling it up and sending it to MN, I trust it will arrive to you and your family.
    Take special care, I love you!
    Angela


    you as I soak

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  22. Sorry for typos...its my phone! Lol... Read past them please :)

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  23. So glad for a peaceful day for you Bella, and I hope you are having the same at this moment as well. We are all blessed to read your story, and to be allowed to be involved in your life, even in such a small way. I can't wait to see pictures of you playing right alongside Ali with a giant smile on your face without the pain of EB. You are a true miracle.

    Krystiana & family from Maine

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  24. Jesus loves me! this I know,
    For the Bible tells me so.
    Little ones to Him belong;
    they are weak but He is strong.

    Yes, Jesus loves me!
    Yes, Jesus loves me!
    Yes, Jesus loves me!
    The Bible tells me so.

    Sailor and Savannah wanted to share a song with you today Beautiful Bella. We saw that you sat up today, good girl, I bet that feels good and get a nice change of view.
    We are praying for you sweetheart. Stay strong!

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  25. Thank you, Jesus, for a quiet, restful day for Bella. And thank you, Jesus, for the opportunity for her family to enjoy your autumn majesty outside of the hospital.

    Rest up, sweet girl. Stay strong. We'll keep praying. Today my prayer is that the doctors treating you will be filled and overcome with the same hope that we all have for you. That they will not tire in this journey and will use every bit of knowledge they have (or can scrape together from others) to come up with continued plans to help you get better.

    I can't wait to read about the day that you come back to see all of these doctors, when you're totally healed, as an example of the breakthrough treatments that cured this awful disease called EB. And I know just what you'll say...

    Love to all of you,
    Megan, Milton PA

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  26. Hello Bella,

    This is my first visit to your site and I am amazed to read how stong you are. I will be praying for you, that you come out of this crisis and that the BMT will work to relieve you of the pain of your condition.

    I must go back and read your story now. Keep on keepin strong Bella, you can beat the odds the Dr's have given you ♥

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  27. Hi Bella, well I have to say you are very "awe inspiring". You see I work as a nurse in an PICU just like your nurses do. I don't know alot about EB so when I read about your story, and all that you go through, day to day, I learned alot. It helps me to be a better nurse to the little girl we currently have in our ICU with JEB. I can understand better what her parents, family are going through and how I can help them stay strong for their very sick little one. I think you are an amazing little girl, and you have touched so many hearts, including mine. Thanks Bella and keep up the fight, you are in my prayers.

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  28. Jack and Molly's NanaOctober 10, 2010 at 8:39 AM

    Mi milagra Bella -
    Jeepers, creepers; glad to see those peepers!
    Aside from the onset of an infection (gotta love those antibiotics, huh?), it looks like you had a nice quiet day....ALL of you had a nice day. How wonderful for you to be able to enjoy the beauty of fall.
    As I was driving home yesterday I noticed a HUGE pumpkin place on Harbor near Adams. It was filled with those gigantic inflatable jumping, climbing, sliding things. Ponies to ride, too. Oh, and there were also pumpkins for sale. It was packed with people! And since you're always on my mind, I thought, "Next year, Bella and Ali should come here." Yup.
    Hope today is as uneventful as yesterday and that those old bacteria are running scared! Go, Bella!

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  29. Bella,

    Its thanksgiving here in Nova Scotia Canada, & while I have lots of things to be thankful for, today I am also thankful that you are in a good sopt & that you are going to be getting some rest, that you have a wonderful family who loves you, & that your Dad is able to share your story with the world.

    I read your blog every day & look forward to seeing you awake soon :) you are a beautiful baby girl & you are so strong.

    I hope that you continue to do better every day.

    Love & prayers,

    C

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  30. Bella, Keep fighting the fight, you are proving that you can overcome with each little hurdle that you get over. You may not know it now, but when you read your parents blog someday, you will know what an inspiration you have been to so many people. You have an army of people praying for you and God is leading that army. Keeping you in our thoughts everyday here in Connecticut.

    “For with God nothing will be impossible.” (Luke 1:37)

    Darcie

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  31. Hey, sweet Bella...

    I can't personally tell any stories of miraculous healings or recoveries. What I can talk about, however, are miracles that occur in our lives every day that tend to go unnoticed. The birth of a baby - is there anything more miraculous than that? Or the human body in general and the way we are "fearfully and wonderfully made" - pretty amazing, I must say. Or the way God orchestrates events to put us in the right place at the right time. In my small, finite mind I view such occurences as miracles given by the One who created the universe.
    C.S. Lewis said "Miracles are a retelling in small letters of the very same story which is written across the whole world in letters too large for some of us to see."

    So what's my message to you, precious one? It's that those of us who love you believe in miracles. We believe in the power of God. We know that through Him and the gifts of science and medicine anything is possible. So keep resting, our Milagra, and sneaking peaks at your family and Disney friends. All of your friends and extended "family" are keeping the faith and cheering for you from near and far.

    Hope your Sunday is extra good! And remember..."Don't give up. Don't ever give up."

    Praying for healing,

    Susan
    A friend in NC

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  32. I hope that the new Dr coming in is willing to be open-minded and optimistic. There are miracles - this I know for fact! My daughter had an 18 minute cardiac arrest in 2005. We were told that night that we should consider removing all support and let her pass peacefully. They said that if she ever did wake up, she would be non-responsive and vegetative. Four days later, she went home with us. In the exact condition she was admitted in, pre-arrest. She had NO damage from it. Without considering a miracle, how else was this possible?

    I can't wait to read and see how Bella gets her miracle. :)

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  33. Day 100 on 10/10/10. It's a binary extravaganza! Yikes! That sounds way too geeky coming from an English major.

    Tim and Ang -

    There are milestones such as these 100 days, but there are no deadlines. Bella has her own timeline and time doesn't mean the same to her that it does to us. The people who do the worst in situations where they do not have control are the ones who pin their hopes on deadlines.

    Time is not an enemy when it comes to Bella. As long as there is hope, there is plenty of time.

    I'm hopeful that Bella had another peaceful, uneventful day today, and that this Sunday was truly a day of rest for all of you.

    Angela Ulrch
    Dublin, Ohio

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  34. Hi Bella and family! I'm back! I bet you didn't even notice that I left. ;) I missed you for sure! I brought my 4 grandkids (7,6,6 & 4yrs. old) camping for a couple of days and man am I tired!
    The first chance I had to get on the computer, I hurried to check up on you. I was worried about you, but I ought to know better by now. You are amazing!
    I'm glad to hear that our little comments are helping you. I'm praying for you always, and that is THE best thing I can do, but if a few words everyday help out too, then you got it!
    I love seeing the fall leaves in your dad's pictures. Here in Louisiana we don't get to see all those pretty colors. We went on a nature hike at the camp ground and we did find ONE red leaf. I'm not kidding, I took a picture!
    My granddaughter, Madeline, got her face painted and she choose a butterfly and I thought of you! She was as beautiful as you are!
    The Saints play today, so don't forget to cheer! In a cajun accent Tim!
    Much love and healing blessings,
    Mandy

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  35. Bella,

    I hope you are having a calm, restful day. I've been thinking about you today. You are so strong. Keep fighting, little girl. We are fighting with you, praying for you, and loving you all across the world.

    Love,
    Kim in NC

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  36. Bella,

    Keep those docs guessing!! Their human minds can never wrap around the though of what God has is store for you!!!!(and them)

    Sweet Jesus,

    I lift The Ringgold's up to you right now, I praise You that they have come this far. I praise YOu for the miracle you are doing in little Bella's body. I praise you for standing at the ready to astound those docs that are taking care of her here on the Earth. When they are "out of options" that YOU and only YOU can intercede on Bella's behalf and amaze the humans scratching their heads!!! That there will be no other way to describe this miracle we call Bella, other than to stand back and give YOU, our Lord, the credit for all things!!! While we have limited minds and capabilities here on earth, You have infinite and wonderful wisdom and continue to carry us through what seems to be impossible. Lord, wrap your strong, loving, Fatherly arms around this family!! Their faith in YOu is amazing and we hold them up, as their human minds tire, that it is YOU and and you that is getting them by in this "bump" in the road. I pray that they find peace and comfort as they continue giving it all to you!! In Jesus' precious name I pray, AMEN!!!!

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  37. Precious girls, precious family.
    I am heartbroken to see this kind of suffering in such a tiny girl, and amazed at the faith and the love and the hope you all have.
    Prayed for you all today.

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  38. Hi there Bella sweetheart, glad to see you had a good day, very glad they caught the infection early, that is always the key. And sitting up for big sis Ali, good job buddy :) you know I have seen some amazing things in our ICU, granted most of my patients are adults, but I have had patients that we never expected to even leave our unit, come back and say hi, so I am looking forward to you doing the same - remember nurses like food :) - atleast we South African ones do ;)but I bet just having you visit will be good enough for them.
    Great to see all the Fall colours on Mommy,Daddy and Ali's little trip today, over here we had a beautiful day here as well except it's spring here, I am loving all the beautiful spring flowers.
    Guess what, I finished your butterfly today, will post it in the morning, not sure if it will get to you, but I sure do hope so :)
    You are always in my thoughts, stay strong sweet Bella.
    All my love and hugs to you, Mommy, Daddy and Ali, and ask Dad to tell your nurses that this nurse here in South Africa says hi :)
    Love and cuddles
    Jess - S.A

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  39. Dear Bella,
    I'm so happy you had a calm weekend. My son, Martin, came back from a camping weekend with Scouts and the first thing he asked me was about you. Victoria, my 16 year old daughter, went to mass yesterday (she doesn't do this too often ...) and light a candle for you.
    My mum, many years ago had a bleeding aneurysm that almost killed her. My dad was his angel because he was with her when she fainted and called the ambulance. She had a difficult operation and the recovery took months and was very hard: she couldn't move, she didn't recognise us, she couldn't speak or would swear at the doctors in English!! (remeber that we speak Spanish...). She was not my mum ... but God helped her to over come all that and now she is going to be 78 this Thursday and is a wonderfull mother and grandmother. Imagine when you will tell your children your amazing story!
    I love the pictures of Minesota , specially the one going down the slide.
    I pray for a good week and for inspiration to the doctors.
    Lots of love,
    Mariana,UK

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  40. T, A, A, and B,
    We love and miss you!
    Love,
    S, D, W, and M.

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  41. Miss Bella I love your peepers catching a glimpse of Mickey Mouse Club! Boy did I like that show when I was a kid a ton of years ago! I am so happy to see you still fighting every step of the way! All of us on your blog are fighting that fight with you and sending you our love, our strength, and our prayers. Each day is a slow step forward - listen to daddy and mommy read to you and let all that love fill you up, fill up your room and every person that touches you! I think you know this already but you are an awesome little lady with an awesome mom, dad and big sister, Keep fighting sweet girl!

    Today we did a very northeastern thing - we went apple picking. WOW was it a lovely day! At the apple orchard they also grow a ton of other veggies & flowers. Sad part was almost all the flowers were done for this season, but the most awesome part were the goldfinches and butterflies enjoying the seeds and nectar leftover. There was again a troop of monarchs flying around today - just announcing to anyone who could see that they were dancing just for you and all your EB friends.

    Bella I know in my heart one day you will say "I was born with this rare skin condition, but when they brought me home from the hospital, it went away."

    Love and nonstop prayers from NJ
    Tina, Mike, Becca & Olivia

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  42. Hi Bella.
    I hope your 10/10/10 has been really awesome and special, like you are. Today I was flying through the clouds to Texas and praying for you. I get to work here all week.

    Sounds like you and Baby Elle are sharing some weird germs! She started with the "cold temperature infection" a few days before you did. I'm guessing that someone needs to be more careful and sterilize a little better! Sigh. As my Dr. said to me, "hospitals are no place for sick people" - too many germs.....! lol

    Keep fighting Bella, you are so loved. The power of prayer has been studied many times and is a proven fact. You have thousands praying for you and all your EB friends and BMT pals. We want to help lift you up and to be part of the miracle of your healing...

    Always remember that you are a child of God and His love and His care are yours forever!

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  43. So glad you had a relatively quiet day and it was restful for everyone. The doctors being baffled by her case makes me believe even more that God is at work here in a mighty way.

    Stay strong and know that you are loved around the world.

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  44. Bella- Two decent days in a row...we will take them. I hope today was the third and you were able to get more rest. I was mowing the lawn this evening and there was the most beautiful sky. It was streaked with pink and I couldnt help but think of you. Then I started talking to you in my mind...hope you heard me. ;) I actually stayed up late last night to read your update. But got to the point where I was seeing double...so I had to comment today. Sorry it wasnt until late. Please know you were in my heart all day. Hugs, kisses and lots of love. xoxox

    Denise WI

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  45. Hello Sweet Bella Girl!

    SO glad you are resting. Your little body has been through so much, rest will help you get stronger! We are praying for you daily and sending you our love from PA! Our baby girl Hope has DEB and is defying all odds, we know you can too!

    Much LOVE and many prayers,

    The Boltes
    www.babybolte.blogspot.com

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  46. Please get well soon Bella - everyone misses your beautiful little smile and wants to see you happy and playing with your big sister. I hope every day from here forward is a small step forward towards getting out of PICU. You don't have to take big steps, slow and steady will do. God is teaching all of us to have patience. So just get better at your own pace. Much love from Kansas, Terri

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  47. hi Bella,
    I am so proud of you and your continuation to fight and baffle all the medical people. I am a nurse by trade and a blessed Christian . A few years ago a couple in our church were led to adopt a baby born in China. They got home with this little tiny girl child that was 9 months old. Shortly after the arrival of Emma they were contacted by the same orphanage in China about a little boy there who was in huge medical need. He was born with a heart defect and had suffered from many problems in his little boy life. Sam had had at least a couple of operations in China and the Chinese Drs felt there was nothing else they could do for him they sent him back to the orphange to "be kept comfortable". His oxygen levels were usually in the 70-80% range. They felt Sam would die soon. The orphangee got in touch with Emma's parents and begged for help for Sam. His little blue fingers and lips and his big wonderful smile despite all he had been through melted hearts. Sam was two months older than Emma and in need of a forever family to help him get the surgery and medication he so desperatly needed.
    Emmas family were sure they wanted Sam (who turned 6 yesterday) but there were many barriers to overcome...1- the Chinese goverment NEVER lets a couple adopt two children in one year 2- the adoption of Emma was just done..where to get the money to bring Sam home 3-Where to get the money to travel again to China so soon 4-Sam would be the 5th child in this family--ages ranged from 22 to Emma who was now a year old 5--he was so sick--would he even make it long enough to come to the US and get his needed surgery.
    Well it was a long and tring few months. Sam and Emma's parents were desperate to get there and get Sam home to proper medical care. Through God's good grace they made it to Sam and got him here just a few days before Christmas the same year that Emma was brought home. He flew all the way from China and was a very sick little boy when he arrived in USA. He went right to the local children's hospital-- pneumonia, fever and a really sick little boy.
    too make this story a little shorter I am going to cut to the chase--Sam had numerous heart caths, tests, treatments and more diagnosed problems they were not aware of. One day about 6 months after Sams arrival he had his major surgery in MN. The surgery was hard--he had some setbacks--some pretty scarry things happened-- But guess what???? Sam now has pink fingers, he can run and play like other newly six year olds. he is growing and thriving.He has had to have medications still...but... he goes to have another heart cath at the end of the month----they believe his pulmonary hypertension has been healed---no more meds!!! he doesnt have to use oxygen at night anymore.. he is in Kindergarden (so is Emma) he grows and is a joy to all who know him. He,with the help of his parents and family and GOD, is doing great!!
    my friend Sam fought really hard to get better... I know you are fighting equally hard, Bella (and your parents)keep it up..there is joy at the end of the Road
    Brenda in TN

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  48. We love you Bella! Kepp it up- the tortoise wins the race over the hare! Prayers, sweet girl!

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  49. Dave Reynolds, ConnecticutOctober 13, 2010 at 6:17 PM

    Tim, Ali and Angelique,
    Parents and sister extraordinaire! I met you, Tim, at the Valencia training this past January, and your love for your ailing daughter and family was so very evident. Bella was so very blessed to have you love her and care for her on her earthly journey. She - and you all - have fought the good fight, and I can only imagine God embracing you all and whispering in your ears "Well done, good and faithful servants". My heart goes out to you, and I want you to know that you are in my thoughts and prayers.

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