Wednesday, August 25, 2010

August 25: Day +54

I'm pretty sure today was a good day. Lots to share...

First piece of good news is the esmolol is out of the picture! They D/C'd it early this morning, and this afternoon, when they did another echocardiogram on Bella, her outflow obstruction was still gone! Her heart sounded great to the cardiologist, Dr. Pyles, so... where were we... oh yeah... It was as if 10 days had mysteriously disappeared, because while we eliminated this whole heart theory, we are still back to where we were 10 days ago to the T... blood pressure that is just too low.

The good news is that there is a buzz of brainstorming and consulting and just plain 'fire' going around the docs about Bella. The docs are so frustrated that they can't figure this thing out that they are calling everyone they know, consulting, literally racking their brains trying to find the solution. We like this.

Again, her problems are:

1) low blood pressure
2) kidney failure
3) acidosis (blood pH is too acidic)
4) fluid overload from leaky vessels

So, the next place we are poking around is in the world of sedation. We have gone up quite a bit on her sedation over these past 10 days and it could have a part to play in her low blood pressure. So today, we started by cutting one of her drugs (precedex) in half. From there, we are going to wean her back on the two narcotics (have to move slower on those to avoid withdrawals) she's on, versed and dilaudid, in an effort to wake up her body. Her mind is awake as evidenced by her pupils now remaining dilated, so we think if we wake up her body a little more, this will allow it to 'kick into gear' more on its own.

We are also going to install an arteriol, or "A" line in her wrist. This will measure her blood pressure on a constant basis and will be far more accurate than the cuff.

Here's a depressing fact:

Her right lower leg has been SQUEEZED by her blood pressure cuff over 5,000 times in the past 52 days. She gets her BP read at least 4 times every hour, and every 3-5 minutes any time we start up a new circuit. That's roughly 100 times a day, every day, for over 50 days now.

Here's a miraculous fact:

Not one of those times caused a blister.

Thank GOD! No, seriously, THANK GOD!

So, an A line will be put in by the bedside, and that will help us get a better view into her pressure.

We also weaned back the steroid hydrocortisone to 6mg every 6 hours, down from 8, which was down from 10. So, we are at just above a half dose of what she was getting, and I really don't think we'll be able to go any further, given her adrenal insufficiency. The goal is to wean 20% every 3 days if she'll let us. Dr. Pyles also doesn't think her hypertrophy is necessarily linked to the hydrocortisone. He said he could see it on the echo from July, which wouldn't have given the drug enough time to do the damage, plus she is a little old for that reaction; it usually occurs in much younger infants. So, if we need to leave a smaller dose running, I'm not as worried about it as I was a week ago. It's just amazing the pretzel you have to turn yourself into regarding whether all these drugs are good for Bella or bad for Bella, and at what doses for what period of time in combination with what other drugs... DIZZYING... almost. I am pleased that I feel like both Angelique and I have kept up with the conversation and the implications of the various drugs Bells is on. I remember when Rafi was going through her transplant and her daddy, Brett, would write about the various drugs and doses... I was really intimidated. I was intimidated when Marybeth wrote about Sam's drugs as well when Sam got her transplant. It really is much easier to follow when you're here all day focusing on nothing else... and have access to wikipedia on your laptop! lol.

SO, there is a "second wind" in the air about "solving Bella" on the unit which we feel really good about. Where's House when you need him? He would have had this whole thing solved in 44 minutes, LOL. Oh, Hollywood. Thank you for completely distorting reality for us all.

In other news...

Today, there are no pictures largely because I was in front of cameras instead of behind them. Today, we filmed a DVD for Bella of mommy and daddy and Ali. The Child-Family Life dept. coordinated with the music therapist (yay!) to assist us in shooting a video for Bella that could be played in her room when we're not there. This will be particularly good distraction material when she is out of her drug induced coma, but the auditory stimulation in the meantime will be beneficial.

After the video session, we had a photographer from Now I Lay Me Down To Sleep come and take portraits of us with Bella. Our social worker thought of this last week, and I realized we had never done a family portrait with the four of us before we left. So, a wonderful photographer turned Bella's room into a portrait studio and shot really sweet pics of Bella, and each combo of us with her, as well as pics with all of us together. It was quite the yoga session to squeeze us all in around her, but it worked. It's probably gonna be awhile before we get the pics back, but I promise I'll be sharing them as soon as I get them!

I had to bribe Ali with ice cream to get her to take some extra pictures at the end of the session, so afterwards, we all went to Punch Pizza for dinner and Dairy Queen for dessert! It was a fun family day in the middle of the week. Thanks for the ongoing prayers, thoughts, and intentions.

One last request, if you haven't commented, would you take a minute to do so? you don't need to worry about what to say. It's not so much WHAT you say, it's THAT you say anything in the first place that touches us. That you take the time out to be a part of our life makes our day, one day at a time. Also, would you be willing to share about our blog on whatever social network you are on? We would be most grateful. Thank you, and good night.




114 comments:

  1. I'm commenting, as requested. :)

    I found Bella through Daylon, I found Daylon through Jonah. Now I check in daily with all three of these precious babies. Bella is in my constant prayers. What a beautiful, strong little girl she is!

    Melissa :)
    www.withasmile.wordpress.com

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  2. Everyday I check on your Sweet Bella, we are hoping and praying for quick miracles for her!

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  3. Still reading from here in Central Florida! Praying for Bella as well. Take care!

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  4. I check your blog everyday for updates, and I'm praying for Bella! This is the first time I've commented. I found Bella's and Daylon's blogs through Jonah's blog. Your Bella is precious, and I can't wait to see God work more miracles in her life- thank you so much for the daily updates!

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  5. The LILMDTS is a wonderful organization. We just invested in a DSLR camera...my hope is someday to be one of those wonderful photographers. When you posted about the number o times Bella bp is taken my first thought was about blisters. Then to find out she has/had none...wow...God is great. I am hoping and praying that Bellas drs figure things out quickly. Bella has become a part of my everyday life. Everytime a pull the tab off a soda I think of her...for Bella! Denise, WI

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  6. Sorry LILMDTS was supposed to be NILMDTS

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  7. Praying for Bella daily! So happy to hear that the heart obstruction is gone! Go Bella!

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  8. My name is Sara. And I am a Bella addict. I think about her all day. Really. I use her as my status updates on facebook when I hear of a bumpy day for you. But the sweetest thing....I had lunch with a dear friend today. She said she had brought home an orchid the day she had read her first blog entry here. And every morning, she tends to her flower and prays for Bella. I think I am contagious! Even my mom is on here now!
    I was sad about the photo-less post, but so anxious to see the ones that were taken! No blisters? Awesome-est news ever!
    I'd say it's a good day, too.

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  9. I'm a med student and I'm interested in BMT and the fact that stem cells from the blood can treat a disease of the skin -- but following Rafi, Daylon, and Bella via their blogs has also just made me fall in love with these sweet kids. I'm currently on a radiology rotation and was actually in the peds reading room last week when they were reading Bella's CT and MRI. I was excited to see a familiar name, and I was so happy to see that they looked ok!

    -Libby

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  10. Hi. I heard about your family and blog from a music therapist colleague of yours, Piper Laird-Reihle, who is my sister-in-law. I have a little boy just a couple months younger than Bella. For the past month or so, I have read your blog every day, usually at night, and am thinking of Bella and all of you as I fall asleep at night. You seem like such an amazing family and Bella is so lucky to have you all by her side.

    I have already shared about your blog on Facebook, and I also posted about it on my business blog (http://mamajewelry.blogspot.com/). :)

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  11. "Not one of those times caused a blister." THANK GOD, indeed! Praying that the "second wind" continues to blow and lift your spirits. A favorite song of mine (actually I have many) is Chris Tomlin's "How Great is Our God." Perhaps you know it; if not, try to find time to listen to it. It always seems to lift and carry me...much like your second wind!

    Blessings to your special family!

    Susan
    A friend in NC

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  12. have been wanting to comment for a while, but i mostly read about anabella on my phone, which doesn't let me comment for some reason. but im here, reading and checking in with your beautiful family daily.
    i also wanted to let you know that when i first started reading, i thought you were a doctor, you "talked the talk" so well. om sure you and angelique are learning more than you had ever wished to know! but your girls are just beautiful. i had two daughters myself once. i had them for about five minutes and they were so gorgeous, i can't imagine the joy of being able to raise two lovely little girls. bella will come home and she will thrive! she is certainly thought of/prayed for daily by me.
    tomorrow will be a better day, and so on.
    lis

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  13. Wow, I can't believe that after ALL those blood pressure squeezes, she hads NO blisters! Hallelujah!

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  14. Praying for Bella daily and all of you!
    Love in Christ, Mary Chinn, Valparaiso, IN

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  15. Hi! I check in on Bella every night after work (RN, working 3-11 shift). I have a special needs daughter. I look forward to reading how Bella's day went. I am hoping things come along. My dad is a cardiothoracic surgeon and he says that it doesn't matter how fast you're going, what matters is that you are going in the right direction. Which Bella seems to be!

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  16. You're right, even if I never can never find the words to say, I should at least say hello. Thank you for allowing us to be a part of your family's story, and for teaching me, among other things, the miracle of a hug.
    With Love, Prayers, and Gratitude,
    Lyn (southeast PA)

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  17. We are sending lots of prayers from Montana to Bella and your family!

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  18. Jack and Molly's NanaAugust 25, 2010 at 9:30 PM

    I guess I figured that you'd make the connection from "Jack and Molly's Nana" to "Sara's Mom"; hope you did. I've been hearing about all of you since Bella's beginning, and have read your book while doing my Tuesdays and Thursdays at Sara and Ken's house. I'm hoping to meet you all when you get home. You blog is the last thing I read before shutting down my computer each night, and I have loved your insights and the comments and prayers from your followers. The "ups" make me smile and the "downs" make me teary, but the comments from your followers make me believe that anything is possible. I can only imagine what they mean to you.

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  19. So often I find myself staying up too late just so I can find out how Bella's day went. I'm so glad that there is a "second wind" at the hospital for her. I could just feel the hope in tonight's post. I look forward to another good one tomorrow.

    Sleep tight Bella.

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  20. I have been reading your blog since I saw an article online. I am awed by your strength as parents to do what you need for your daughter. I can only imagine what you must feel everyday. I will pray that God gives you strength for all you need.

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  21. As I read about Bella tonight, a melody came to mind. I started humming it and my daughter asked what I was singing. I told her it was a song for Bella. She asked me what the words were and I told her that they weren't written yet... she told me to sleep with a piece of paper under my pillow to see if the song fairy would deliver the words. I'm gonna take her advice, good night.

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  22. Wonderful news tonight, Tim! Hope it continues to get better for little Bella. - Christa Lorenz

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  23. I fell in love with your Bella doll, from the first day she came to Joan's. When I dropped off Christian each morning, and would see her 'cow' print car seat @ the door, I would get SO excited to see her. She is a beautiful baby girl, that lights up when she smiles....she smiles with her whole being...and those eyes get the cutest twinkle! Ever since I heard about your blog (back in July)- I faithfully read and comment (try to) each and every night- I look forward to her daily updates! Not only do I look forward to her updates, but I pray for her dearly. I have shared Bella's journey with my family, friends, church, strangers, etc. So estatic to hear that she is moving in the right direction! I was thinking, that once her little body 'kicks into gear', all the green lights will turn on and the BP will stablize, the kidneys will take their role and so on! Dear

    Lord, I thank you for letting the medical staff work in a sychronized fashion, and leading them to this awesome 'second wind'...please continue to watch over Bella tonight and strengthen her kidneys, blood pressure. Please Lord, let the acidosis and fluid overflow, fade away quickly!

    Sweet dreams Bella...we are here for you girlie girl!!
    xoxo
    nicole

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  24. Many hugs and prayers go to you guys! Thats wonderful that Bellas skin is much stronger. KEep fighting, sweet little girl!

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  25. This is only my second time commenting, but I check your blog several times a day. Praying so hard here in Castle Rock, Colorado for Bella! You and your family are very inspirational to me! Even though we have never met, through your writing, I feel as though I know you. I am glad there were some ups today for Bella! Go Bella, GO! =) Thanks for sharing Bella's journey with us!

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  26. I read your blog every night... and pray for Bella and Daylon as if they were my own babies. You inspire me to be a better mother... to not take moments for granted... and to count my many blessings. You have taught me faith, and patience, and joy, and perserverance. I thank you for sharing your story with my family. Because of you, I hub my babies a little tighter and kiss my husband a little more often. We are all blessed... sometimes it's too easy to forget that! :)

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  27. As asked, I'd be happy to comment. It is a gift to me to be allowed to follow Bella and your daily lives in an extraordinary situation. She is in my thoughts and helps me keep perspective of my own issues which are very small in comparison. I am thereby reminded to be grateful for what I have.

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  28. I am still here, still reading with bated breath, still praying for you all! The positives certainly were a great relief today to read!!!!! WTG Bella!

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  29. Unlike most of your "bloggers" I read your updates in the afternoons,a day ahead even! Dawn and friends in canberra,Australia, cont to follow Bellas progress with love. We cont to be inspired by the strength of your faith.also of Dylons family. we storm the heavens daily as we cont to share the story of the most amazing little Bella.Resr in HIS LOVE

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  30. First time poster, long time Bella lover!! I found Bella through Daylon, Daylon through Jonah, Jonah through Tripp, and Tripp through Leah! Quite the chain. I read about and pray for Bella every night around this time-2am in Texas.

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  31. OOps I meant rest.Hard to imagine I was your Mums secretary once isnt it!!!

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  32. I'm so to read about the wonderful progress Bella has made in these last few days. She is such a strong girl. I can't help but just be so proud of her. My prayers will continue for her tonight. Stay strong.

    Take Care,
    Amber McLaughlin,CA

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  33. Hello, you asked me to comment, I found your blog through another blog and have been reading for 10 days now, oh sweet bella is so beautiful. I have shared your story on facebook. I've prayed nightly for your sweet daughter, and I hope that god guides you through the hardest journey you'll ever experience as a parent.

    "I would have killed 10 men and satan to make my daughter better, but god didn't as that of me, god never asked that of me. Instead he asked me to do the infinetly harder thing, to do the best I can with what I've been given."

    All I know to say.

    Kare

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  34. Hi!

    I started reading your blog a couple of weeks ago, and now I have finally caught up (started reading from the very beginning).
    I just wanted to let you know how absolutely amazed I am about your family, how you are handling all this, how you choose to approach the situation you are in.
    Coming from Sweden, and therefore reading many Swedish blogs, I am so glad to see your faith, how you are putting everything in God's hand, both for the day and for the future... Sweden definitely lacks that. Even when things are going downhill, you never seem to falter in your faith... truly amazing.

    I check in every day, and include you, Bella, Ali and Ang in my prayers every night.

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  35. So good to read you today! It was a UP day indeed.

    Your family and specially Bella are constantly on my mind. Every time I look to my Matilde (15 mo, with EB) and my Beatriz (4yr, EB free) I feel so fortunate. Through your journey you have taught me to always seek and empathise the good things in our life. And I have so many! THANK YOU for touching our lives daily.

    Keep the faith and strength. God is good.

    Carla, from Portugal

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  36. I found your blog on Sunday via a link on Facebook. I check on updates every night after dinner. Glad to see things have improved today. I enjoy the positivity your family radiates, even in the toughest times, and the gorgeous family photos, precious!! As an EB mum, thanks for sharing this journey, i'm sure the destination will be worth it.

    Kylie from Australia

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  37. My day isn't complete without checking in on the gorgeous Miss Bella. Sending you all love and prayers!!

    Shana- Australia

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  38. Like many, I have Patrice and Jonah to thank for learning about Bella, Daylon, and the other children in the EB family. I was hooked immediately, not only on Bella's story, but on your fantastic updates. I think pretty soon you'll be handed a white coat and stethoscope :)

    I'm happy to report that Bella's blog (and Daylon's and Jonah's) have been regulars on our blog!

    Many hugs and prayers for steady glimmers of improvements in your sweet little gal and for stamina and continued faith for the rest of her amazing family.

    Helen/'Lucy'

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  39. I ordered your book this past June, finished it in one Sunday afternoon, and have been hooked on your blog ever since. Bella has become part of my life, and she is in my prayers all the day long. I start my day reading about your yesterday, and praying for your today. It was a wonderful "UP" post today! Its absolutely amazing that no blisters formed after so many bp readings...wow...God's hand is so apparent there! Blessings to the docs, may their second wind be fruitful, blessings to you and Ang, stay strong through so much uncertainty, blessings to Ali, she is so full of life! And blessings to Bella, beautiful baby girl, who will be well!

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  40. Praying for Bella and your family!

    Kristen in MD

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  41. I am here reading, checking on your precious daughter every day. I pray for the day when we will all rejoice together over God's healing for her! you are a strong family...

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  42. I check in on Bella's progress every morning. Praying for your family.

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  43. I found your blog through Jonah. I check on you often and keep praying. You have made me appreciate each moment with my little girls even more.

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  44. I check in on Bella each morning to see how to be praying for her - I so appreciate your post. I love to pray specifically and watch God at work.

    I originally found out about the BMT trials when Sam was in transplant (through Jonah) and have been following each new EB kid since.

    The families of these EB kids continue to amaze and inspire me. Please know that I also pray for you as this horrible disease effects families as well as these precious children.

    Praying from Waterford, MI

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  45. I check in on Bella, Daylon and Jonah every morning before I start my work day. All of these EB sweeties are always in my prayers. I am alway amazed at the strength that all of you parents possess.

    Glenda in NC

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  46. Glad today was a good day! Just commenting to let you all know I am still here. I read Bella's blog every morning with my coffee. My day doesn't really begin until I know how Bella is doing, and Im so glad you have let us all be a part of her world :D Thoughts and prayers to you all ~

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  47. Still following and praying daily from Yellowstone, WY.

    Hugs,
    Thomas & Elaine

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  48. Reading this first thing each morning and last thing each night! God bless you all!

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  49. I'm following Bella's and your family's journey and keeping you all in my prayers. I love reading the blog each day - so glad that you are documenting her journey!! Sending my thoughts and prayers -

    Stephanie
    therhythmicmind.wordpress.com

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  50. Hi Tim: Wow, look at all the comments you have received today. Doesn't it blow you away that so many people check in to see how beautiful Bella is doing. All the prayers from all over the world must make you guys feel so warm and fuzzy. We all love your family and hope and pray that Bella, Daylon, Elle, Payton and all the other EB cuties kick some serious EB butt.
    Keep up the good work with the doctors brain storming. Maybe there will be a solution to the mysteries concerning Bella. Extra prayers for better days. God Bless. Love Leah's Nana

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  51. Impromptu family day in the middle of the week is a great day indeed! Thinking of you in Pittsburgh, PA!

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  52. I've never commented before, but I begin each day by reading your latest post on Bella and praying for a smooth day as the sun begins to rise in Minnesota. My younger daughter is a "heart baby," born with several heart defects requiring intervention at 18 hours old and open heart surgery at 11 weeks. We know she will require several more open heart surgeries over the course of her life, but nothing holds her back. She is a miracle and we appreciate every day with her. My hopes and prayers for your family are that you get to enjoy that same wondrous outcome!

    Josie

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  53. My daugther, Bella, and I pray for your sweet Bella and your family every night. Your writings take us on this journey with you. God Bless you.

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  54. I HAVE NEVER LEFT A COMMENT BUT I CHECK IN EVERY SINGLE MORNING ON BELLA,DAYLON,JONAH,ELLE AND TRIPP.I PRAY FOR ALL OF YOU GUYS AND I PRAY FOR STRENGTH FOR ALL THE PARENTS.I REALIZE HOW LUCKY I AM THAT I HAVE 2 HEALTHY LITTLE BOYS AND I NO LONGER TAKE THAT FOR GRANTED.I THANK GOD EVERY SINGLE DAY FOR THAT.I ADMIRE YOUR PATIENCE AND COURAGE.I HAD TO LAUGH WHEN I WAS READING THIS POST AND YOU MENTIONED DR.HOUSE.A COUPLE OF DAYS AGO I WAS THINKING THE EXACT SAME THING!
    AMANDA

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  55. Just a little message from Yvonne in Lombard, a suburb outside of Chicago. Praying for Bella and Daylon here in the Lilac Village.

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  56. I am one of those that has never commented but been following your blog since the beginning of Bella's BMT. Thank you so much for sharing your story with everyone. Your family has great courage and strength. Praying for you in Nebraska.

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  57. Still praying for Bella and for y'all.
    A momma in TX.
    Adding Bella's button to my blog this afternoon.

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  58. Hi! I am Heather. Praying for you in Pittsburgh, PA.

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  59. Still here, still praying, as always. Love you guys!

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  60. Praying for Bella in Ohio... :-)

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  61. I also pray for Bella, the doctors as well as for you and Ang every night. I look forward to reading your blog each morning before work. I found your blog through Jonah's blog (which also led me to Tripp, Daylon, Leah). I think I found Jonah's blog through the Bolte Family - however it happened I'm SO grateful for it. Your family is such an inspiration to me - BELLA is an inspiration to me. I covet the day when she says "Yeah I was born with this rare disease but when I came home from the hospital it went away". Loved hearing about the second wind and a good day. Can't wait for Daylon & Bella to be together in 5D again!! Much Love!!

    Lindsey - Michigan

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  62. Coming out of hiding to say that every day I check on Bella. I've never met you but your family has come to mean so much to me, I pray for you all each day. Elizabeth - Fresno, CA

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  63. Tim, I've been following Bella's blog from day one. I've never commented, at times I am so overwhelmed with what you are going through, that I have no words. I read both Bella and Daylons log before I start my day I pray everyday for all of you and thank you for the man, son, husband and father that you are....what a blessing to all of us and especially your beautiful family! With love and continued prayers.

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  64. Still here & still praying for Bella & ya'll. I don't comment daily but I read daily as well as pray. Also praying that each day is better so that Bella can join Daylon on 5D. Love & prayer's going up from Ponchatoula, La. God Bless All.

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  65. I've commented before, but I just wanted to say that I check in with you every day and always keep you in prayer! Our thoughts are always with you.

    (Birmingham, Ala.)

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  66. So glad things are slowly improving. We continue to pray for Bella and the family.

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  67. I, like many others, found your blog through Jonah's and Daylon's, and I appreciate your writing style. I wish all the best for Bella and your family.

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  68. Hope the days just keep getting better and better. xoxoxoxo

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  69. Bella, Daylon, Tripp, Jonah, Elle, Rafi and all of the EB Sweeties are always on my mind. The first thing I do every morning is check on Bella and Daylon and that is also my first priority upon waking up in the morning. I usually fall asleep every night praying for your precious Bella and your family, along with everyone else. I have never commented, but I am humbled everyday at the amazing strength and dedication you have towards your daughter and your family. Praying and thinking about you all always!!!

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  70. I found your blog from Jonah's blog. I pray for Bella and your family everyday. I live in Boston and have three kids of my own. You are doing such an amazing job of caring for Bella. I can't wait to see all the wonderful adventures Bella has ahead of her!

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  71. I found Bella through Daylon and Daylon through my boyfriend's cousin's facebook. I go home and talk to my boyfriend about these babies everyday and how my heart aches but how amazed I am of the dedication and strength your families have. I pray daily and these little guys are so strong and with your strength added and God's guidance there's no doubt in my mind they won't conquer all the obstacles they've been faced with.

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  72. Hello! Been following your story and praying for awhile now. I, too, found you from Jonah and Daylon. Love from our family in Illinois.

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  73. Hi! I do not comment everyday because I don't feel like I have anything new to say... Except! I follow your blog everyday! I pray for Bella everyday! I admire you and your wife and big baby girl! I will post about Bella on my facebook page.... I would love to send you a cute picture to share with your daughters.. Is there an email? Love and Prayers from Dothan, Alabama!

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  74. The first thing I do in the mornings is check in on Bella and Daylon. Thoughts and prayers from my family in Idaho.

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  75. praying for sweet Bella!

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  76. You don't know me...I can't even remember how I found your blog. But, I check it first thing each morning and pray for sweet Bella and Dylon each day.

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  77. We are praying for Bella, Daylon, Sam, EJ, and all the other amazing families that are on your same journey. We are in Central California and my son is 11 years old. He has EB Simplex. I find your strength absolutely amazing and thank you for letting us into your world ---- may God continue to give you strength.

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  78. It is through Sara Cooper that I have found your blog, found you, found Bella, found out about EB and found all of these beautiful children to pray for. I check this site every morning to see how you are all doing. I rejoice when I can see Bella's eyes or when I see your smiles. Thanks you for opening my eyes to something so fragile and important! I have found through your site a family from Corona! So near to my home! I think of you all daily.
    Le Anne
    Southern CA

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  79. Continued prayers from Los Angeles on the docs "solving Bella." Much love.

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  80. Hi,
    I have know Angelique through email & phone at work for over 6yrs. I am so happy to be working for her now! Your family's strength and faith have captured me. Bella has WON my family's heart! We pray for her and all of you daily.

    Tina in NJ

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  81. One of my husbands coworkers had a son, Jameson, who did not win his battle against EB. I have followed all the other EB babies with a soft spot in my heart for them. I did find you through Jonah! I pray for Bella each day when I read your blog.

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  82. You are an amazing women. I'm so sorry that you have to go down this very crooked road with your beloved Bella. My prayers and thoughts are with you and your family everyday. Your strength and wisdom is an inspiration to me and to many others. Keep up the fight and know that many are praying for a cure for Bella.

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  83. I too found Bella's and Daylon's blogs through Jonah's blog. We check on her daily (ok, a few times a day!). Lots of prayers for her!

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  84. I have been reading daily from the beginning. I found you through Jonah. Praying for Bella daily!!!

    Jessica
    www.dylanandlandonsmama.blogspot.com

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  85. I have no idea how I found Jonah, but then I found Daylon and from there, Bella! I've never commented but I check on each of them daily. And pray for them too. You can find us at www.goodolegoodsons.blogspot.com

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  86. Praying for you from Indiana!

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  87. Praying from North Carolina! So happy that you had a good family day. Ice cream (especially Dairy Queen) works wonders. Thank you for sharing your story with us.

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  88. Wowza! Look at all the people pulling for Bella! It makes my eyes water with joy! I am adding a link to the blog on my FB page. I spread the word about Bella whenever I can; family, friends, co-workers, etc.
    In our prayers ALWAYS!
    Love you tons,
    The Vanderboom's

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  89. Commenting :)

    Check and pray everyday - originally found you through Daylon's blog (who I found from Jonah's).

    Don't normally comment, but here nontheless :)
    Will post a link on FB - take care

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  90. I found Bella through Jonah's website and just want you to know that I am praying for your sweet girl!

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  91. I'm Julie, I read your blog every day, as well as the other sweet kids in the BMT trial. Please know that my prayers go out every day for Bella and Daylon and the kids, and also for all of you parents in what must be the most exhausting, emotional and scary experience of your lives. Your daughter is so beautiful and so blessed to have you as parents.

    God's blessings, Julie

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  92. Praying and reading daily. Will continue till you leave the hospital and do not have to return. sg - KS

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  93. I found you through Jonah, who was brought to my attention by a Winston-Salem, N.C. FaceBook friend. I now check on Jonah, Daylon, Bella, and Tripp every day and pray for them all regularly. My prayers go out to you and your sweet family. Hang in there.

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  94. Go Bella! I feel like I never get to see you guys anymore! :( At least there's our blogs! I'm really happy to hear that the doctors are starting to figure things out! All I can say is these kids better put us in fancy retirement centers when this is all said and done. I have a feeling I'll be checking in early! LOL! We pray and think of you guys daily! Love you all! Jennifer

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  95. I'm glad that the doctors are really working together as a team treating the whole patient, Bella, rather than each doctor just treating their specialty, part or system of Bella. How each doctor treats her, and what meds they give her need to all work together to solve the puzzle that is "Bella" right now. I do believe that with all the people from around the world praying for Bella and the medical staff taking care of her, that the puzzle of what is needed for Bella's body to get to a healthy balance will come together. Bella is an amazing human being, and she, through you, and your amazing writing of her story is impacting so many peoples lives all around the world. Bella truly is a "Blessing", not only to her famly, but to all of us reading your posts everyday ( or night, or multiple times a day, like me and so many others). Judy T.(Leah's Grandma), Bowie MD

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  96. I have never commented before, but have been reading Bella's blog for a couple of months now - found it through Jonah's like so many others! I LOVE your writing and have just been drawn to this site and your journey. Thank you SO MUCH for allowing us strangers to walk through your days with you and learn so much about this yucky EB disease. I have 5 children and have shared Bella's story with them and update them daily, so we can pray together at night for her. She is a beautiful, sweet baby and I know God hears all the MANY, MANY prayers lifted up for her every second of the day. Okay, this is why I don't comment.... I get a little carried away :) Praise God for the good news today!
    Praise God for Bella!!
    Wendy and family in St. Louis

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  97. Sending prayers from Alabama! Came here from Jonah. Started reading Jonah's blog when he was born. My Mom lives near W-S and Jonah is on her church prayer list. The strength of the EB families is amazing to me - the least I can do is uplift you in prayer!

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  98. Hello from Hawaii! I found you on Jonah's webpage and check in everyday. Lots of prayers going your way!

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  99. We love you guys and think about you and pray for you every single day. Thank you for being so open and honest and true, you alllow us to witness a miracle in each of you every day. Anything I can ever do for you guys I will... just say the word! Sending strength this moment! Hugs! The Ostermanns

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  100. Toni Ceballos-SharpAugust 26, 2010 at 4:36 PM

    This is my first time commenting, but have wanted to all along. I pray for Bella and your family very often. I check on your update and Thank God for all the blessings He has brought to all of you. I went to high school with Angie and am so happy that she has such an amazing family. Will keep the prayers flowing. God Bless!!!

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  101. I'm also commenting for the first time. I popped over from Daylon's Blog awhile ago and have been silently stalking ever since. I love hearing about Bella's successes even with all the struggles she has to go through. Hopefully she'll catch up with Daylon sometime soon.

    -Sara

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  102. I check your blog often but this is my 1st time commenting! I found your blog through Jonah's blog and now I check all 3 (Daylon's too) nightly! I pray for complete healing for Bella! She is a beautiful litte girl and I get so excited to hear good news about her! God bless Bella & your whole family.

    Kristin, NY

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  103. Tim, I've been following Bella's story since we reconnected on Facebook last year through our Redding Elementary classmates. I read your blog every night before I go to bed, and my husband I pray for a cure to her illness. I know we're not family, but by reading your blog, we feel like we've become part of your family. When you ache, we ache. When you're hopeful, we're hopeful! I purchased your book and plan to finish reading it this weekend. Thank you for writing so candidly about Bella's disease and what you and Ang been going through as parents. I may not comment online, but Bella is in my heart and thoughts everyday. I wish you, Ang and Ali continued strength during her journey to wellness!

    Bonnie in OH

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  104. Thank you, everyone. We are so humbled by your response. God bless you!

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  105. You have a very sweet family and I pray for you all daily. Keep on Keeping on...
    Jen

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  106. I pray for Bella and your family daily! May God continue to heal sweet Bella!

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  107. I keep Bella and family in my daily thoughts and prayers. Go Bella!

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  108. Hello! Meant to comment yesterday! Still praying for Bella from NY! I have to check for updates in the morning before I get up and get ready! :) Hoping for easier days ahead.

    Kara, NY

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  109. I check in and pray for Bella, Daylon, and Jonah every morning.

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  110. I found Bella through Jonah. I check on her everyday. This BMT is such a miracle for these kids. Hopefully one day because of babies like Bella and Daylon there will be a cure for this horrible thing called EB. Thinking of you.

    Jody, MT

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  111. Still here praying from Corona, CA. I think about Bella and Daylon CONSTANTLY! I am always telling people about your blog! :)

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  112. Sweet Bella we miss seeing your beautiful face at Grandma Joanie's and your radiant smile. I check your blog nightly after my family is sleeping. It gives me time to reflect on my day and get updated on yours. I work for the County of Orange in the Health Care field and have passed along your blog to many friends and co-workers. I have co-worker's stop by my office for their daily "Bella update." There have been a few times that we have shut my door and had a mini prayer session right then and there. Your family has made such a dramatic impact on my life, my thinkings and my relationship with our Lord. I can not thank you enough for your openess and honesty. Your dedication is like no other, it's a beautiful thing (-: Sometimes if I am away from my home computer, I check via cell phone. (Awe the beauty of electronics in 2010). Braeden asks to see pics of Bella and Ali and says, "Bella is away getting better." It great to see Ali is charming the pants off of all who she meets. She is such a little sassy superstar, always dressed super cute! All of us at Grandma Joanie's anticipate your return home. We send our love, prayers, intentions and strength to you all and to the Edling's as well. My nephew plays for Corona High football and we have been sharing their story too. It is amazing how God has brought your families together.
    Peace and Love-

    The Davidson's

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  113. Following your story and praying for Bella in Chicago.

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  114. I check in on Bella often and I am continually amazed! I am praying for her healing and for your family! Love from Texas!

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