Friday, October 8, 2010

October 8: Day +98



Ali givin' a little love to Bella...

Heaveno!

Good news... the roller coaster did not stop at the bottom. It just headed back up again!

Today:

Normal temperature.
No infection in lungs.
Normal heart rate.
No fluid boluses.
No increase in pressers.
Weaned her vent from a rate of 28 breaths per minute to 16 in one day (that is HUGE).

Good stuff.

Again, we are POOPED, as is Bella. But we're in much better spirits today. Thank you so much for the quality and quantity of your letters, wishes, prayers, thoughts, intention, and hopes for Bella. They worked. Again. You're hired. Ang and I both pulled long shifts reading the blog comments to her. I read the first 77 from this morning to her, and Ang read the rest this evening. Bella got literally HOURS of reading by her mommy and daddy today. What is so great about is that she didn't just benefit from the sounds of our voices, she got to hear some of the most inspirational and motivation outpourings of human love and spirit I have ever witnessed. I usually can read the comments to her without getting choked up, but even I was crying while reading some of them this morning to her.

It felt really good to cry. It felt like I am still invested in my heart to Bella, and have not lost my true self in assimilating into a full time employee of the hospital.


I was so tired at lunch I tried to put a to-go top on my ice tea...

I also want to thank those of you comfortable enough to share your names and locations on every comment you leave. I feel like we are really growing close to each other. Your personalities shine in what you write and how you write as well, and I feel a genuine bond to the person on the other end of the computer. To those of you that do not sign your name or location, please consider doing so, I so want to thank you in my heart, and know where another beam of light is raising into the universe on Bella's behalf.

Someone did get it right, the world-wide web of energy being transmitted up and out on Bella's behalf is an amazing phenomenon in an of itself. There are prayers and intentions and thoughts of and for Bella round the globe, round the clock. I am convinced THAT is what is holding ALL of us here together at this point.

I can't remember if I told you this... yesterday, when Dr. Wagner came to visit, I told him that the timing of her blood pressure returning was when I started reading your comments to her. His immediate comment was, "Well, KEEP READING TO HER!"

So there you have it. It's doctor's orders! YOU ARE BELLA'S PRESCRIPTION!

BIG MOMENT TODAY...

For the first time since maybe Bella was a week old, there is no mepilex bandages on her left leg! Today, we opted to discontinue that layer altogether and just run with a single rolled gauze for the whole leg, and tubifast. We used to use mepilex, then we downgraded to mepilex transfer, and now we've d/c'd that layer completely. Next will be to d/c the roll gauze layer. We are running with tubifast on arms and legs right now anyway, because doctors and nurses with gloves on equals lots of nicks, shearing, and wounds otherwise avoided. Plus, she's not exactly wearing any clothes, so it helps a little tiny bit with her temp.

I could probably go on about more stuff, but I honestly can't remember anything else to talk about and I am so so tired. So, I'm just gonna cut it off here for the day and say thank you.

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

God night.


Check out our new door stop!

81 comments:

  1. I tried to go to sleep but had to get up cause I knew it was about posting time. I'm so glad to hear the roller coaster is on the way up and I Pray the Lord to keep it that way! I'm glad to see a short post Tim. I'm sure you know there are a lot of us just waiting for updates but we know that you need to take care of you in order to take care of Bella.


    Bella,
    Tomorrow is another big day of healing and growing so rest up little girl. Good Night. Sleep Tight. Don't let the bed bugs bite.

    Love from Dallas.

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  2. Sweet strong Bella, I knew you could surprise everyone again! I am so glad today was a better day!!

    "There are prayers and intentions and thoughts of and for Bella round the globe, round the clock. I am convinced THAT is what is holding ALL of us here together at this point."

    This reminded me of a poem by Robert Creeley:

    "For Friendship"

    For friendship
    make a chain that holds,
    to be bound to
    others, two by two,

    a walk, a garland,
    handed by hands
    that cannot move
    unless they hold.

    ---

    I am so happy to hear that Bella turned it around yet again. I can't imagine how tired her mama and daddy must be of this rollercoaster. I hope she has a calm, positive weekend and the rest of the family is able to recharge.

    Best,
    Cara in Tucson

    P.S. Ari colored his very first picture today with some new crayons that I got him that are shaped like farm animals. He liked making the farm animal noises as much as the coloring. He will be 15 months old exactly tomorrow!

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  3. My new Droid has been set to your blog all day. Even knowing you would never post during the day, I still.checked it. I was encouraged by the comments that I read, I can only imagine how they've helped you.
    And, now I know that hitting the refresh button hundreds of times will not damage my phone at all.
    Bella...You are a remarkable girl, with a remarkable family. I love your new community, your village. I'm honored to be a teeny part of it. Speaking of being a part of something...team Bella is still gathering money in your name. And, I'm pretty sure our t-shirts will be the cutest ones there. I mean, YOU are on the back! I love that every person walking behind Team Bella will see your sweet face. Sleep well, Ringgolds.
    Love and prayers from home...

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  4. T, A, A, & B,
    We love and miss you.
    S, D, W, & M, from Home.

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  5. To Bella and family,

    I am so relieved to hear that today was a good day. Bella, you are just so brave. Keep fighting! There are plenty of Mickey Mouse clubhouse episodes that you need to catch up on missy! To your parents and sister, stay strong and never lose hope. I am praying and sending warm thoughts your way!

    love from california

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  6. Jack and Molly's NanaOctober 8, 2010 at 9:59 PM

    My computer chair and my sewing chair are back-to-back in my craft room. So today, while working on a Halloween costume I kept checking to see if perhaps you had done an early update. But WOW! This evening's post was well worth the wait. I can't imagine how relieved you all must be; I know that all of us in cyberland are thrilled for all of you.
    As I read your news, I thought of my very favorite Spanish word - milagro - or in Bella's case - milagra, or miracle girl. As a retired bilingual elementary school administrative assistant (isn't THAT a mouthful?) it wasn't a word we used often, but certainly applies to her today. Thank you, God, for hearing all the prayers, and especially for responding!
    Bella Bella - keep up the great work; I'm very proud of you! And next year I want to make YOUR costume, and one for Ali, too...maybe butterflies?
    God night indeed!

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  7. heaveno!

    sweet bella you were on my mind a lot today! glad to hear today was a better day!

    i am lifting you and your family up in prayer tonight.

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

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  8. Bella! Way to go sweetie!!! You are doing such a great job! Keep fighting.... stay strong!! You WILL get better... You WILL beat this!! I am SO HAPPY that you had a better day!!! Last night when I wrote you there were just a few comments... then by the end of the day today you had 169!!!! You have people from all over the world wrapped around your little finger!!! Last night I went to bed praying for you... and I prayed so long and so hard, that I fell asleep... then I dreamt about you!!!! I checked in on you so many times today! I'm a new stay at home mommy... and I have been reading my Bella (who is 3 months old) your story! We will sit in front of the computer and talk to you and she told me to tell you to get better =0)

    Tim, Ang... thank you for being such amazing people and parents to your little angel! She is trully blessed to have you as her parents! Stay strong... you will all get through this!!

    All my love,
    Sarah in Colorado

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  9. At ten my eyes were burning and bed was calling but I would NOT go to bed without knowing how Bellas day had been. So now that is almost midnight and I know that all of those prayers and positive thoughts are helping I can go to sleep with a smile in my heart.

    Bella- I waited with so much anxiety wondering how your day went. It is amazing that even after commenting 3 times already today I still have stuff to say. ;) You are such a puzzle baby girl. I know so many would love to know the answers on how to make you feel better. My tears fell so easily today. They fell for you. I remember sitting by the window and wondered...what more does God want you to teach everyone? You have taught so many people so much. You have changed lives. You have made people better parents because they appreciate their children more and hug them more. You are my ray of sunshine. I know I am not happy without seeing your beautiful face. You have captured my heart sweet girl. Sending you hugs and kisses. Plus love to keep you warm. XOXOXO

    Denise WI

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  10. Good morning Bella! I was looking at your blog two nights ago and spoke with my daughter, Mikaela, about how you are doing. I told her that you needed some extra special thoughts. She was moved to thinking about you all day today. She even shared your story during sharing time today at school. I printed a picture of one of your "socks of the day" so she could show everyone who you are, or at least what your socks look like. The teacher said she was very moving in her talk about a little girl in a hospital who needs people to think special thoughts about her getting better. So at about 4:00p your time on Friday there were 22 kindergartners thinking special thoughts.

    Rest well!
    Piper and Mikaela -- Phoenix, AZ

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  11. Yeah! I can't even tell you how many times I thought and prayed for you all today! And I love the fact that tonight I got goosebumps instead of tears from hearing about your day! Way to go Bella! Stay strong! We are all here for you! Keep moving forward! (my daughters favorite movie) I will be thinking of you and continue with the rest of the world praying for you guys! Keep it up sweetie!
    Amanda
    From Colorado

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  12. *** Doing a Happy Dance ***
    *** Doing a Happy Dance ***

    Way to go Bella!! Keep up the awesomeness (is that a word). Last night i went to sleep with a heavy heart after reading your daddy's post. I am soooooo happy to read your daddy's post tonight and see that you are doing better today. Guess you needed a rest, huh? Thats OK. Much Love and Happiness!! My heart is filled with joy tonight as i go to bed. Sleep well, Beautiful.

    *** Doing a Happy Dance ***
    *** Doing a Happy Dance ***

    BTW - that is the prettiest door stop I have ever seen, lol.

    Love, Hugs and Prayers from MD

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  13. Good Job Bella girl!!! I KNEW you could do it. Once AGAIN you have confirmed my testimony in prayer and also the power of fasting and concentrating my energy into one positive thing and asking God for a miracle. I love you and your family so much and it's crazy cuz we've never even met in person but, I can't describe the way I feel about you guys any other way. I feel like we are FAMILY!! I think about you all day and today of course was no different. I talked about you ALL DAY today. Usually I don't have anyone to talk to all day except my 2 year old and 9 month old. hahaha...and they hear about you all of the time. But, today, helped my 2 sisters, Megan and Allyson, paint Megans room AGAIN!! Allyson and I painted it about 6 months ago while my sister was away on visiting her old friends in Oregon(Megan is my sister with brain cancer. She used to live in Oregon before she was diagnosed but since then she has moved back home with my parents to California). Anyways, we had painted her a SHERBERT ORANGE(I know, I know...my mom picked out the color) and needless to say, Megan didn't like it. She really tried to since Allyson and I spent so much time painting it but she just couldn't take it anymore. So alas, today we painted it a beautiful turqoise color. Of course we made Megan help us since she just had to re paint it. Anyways, because I was with them all day, they heard about YOU all day and they fell in love you too!! So we have 2 more fans on board! Hey, we can use all the prayers and good thoughts we can get. Please, please, please keep up the GREAT WORK Bella. I love reading the good posts...those bad ones are too scary for me.

    Lots of Love,
    Amber, Craig, Malorie(2 1/2), and Liam(9 months)
    The McLaughlins
    Moreno Valley, CA

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  14. BTW...Ali is so darn cute!!! She makes the coolest door stop! hehehe

    -Amber

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  15. Bella, sweet beautiful Bella,
    I/we knew you could do it, that is, have a much better day, and with less bandaging too! God is good! Bella, how about you make it another good day Sat. the 9th, and then Sunday the 10th, and just keep stringing together the good days, and the even better days, and before you know it you will be out of the ICU, and back to the BMT floor, then released to the RMD! You can do it sweet baby girl, we all have Faith that you WILL be WELL! Bella, rest, heal, gain your strength, you are so LOVED, by so many people all around God's beautiful world. Bella, you are so blessed to have your Mom, Dad, and wonderful big sister, they are amazing, and strong, just like you. Praying for more good days ahead, and that the bumpy, rough and tough days are behind you now.
    Judy T. (Leah's Grandma), Bowie, Maryland

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  16. Bella,

    Shalimar, David, Tom, Salvatore, and Valentina are praying for you from La Habra, Ca.

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  17. It's been a little while since I checked the blog, but today I felt compelled to check in & see how Daylon and Bella are doing. I'll send a few more prayers your way. As always, my prayers and best wishes for Bella and all of you.
    Brandie Metz

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  18. Dear Bella,

    I am so happy to hear that today was a better day for you! The power of prayer is pretty amazing isn't it?!?! I thought about you lots and lots today and shared more about your journey with my middle daughter, Izabella! Next week, we are going to finish up a little project for you and send it your way! Keep that fighting spirit going! I know it must seem like you are in so deep right now, but like your Daddy says one day you will look back at all of this and be all better! I just know it! I hope today and tonight is full of warm happy thoughts and dreams and that you aren't in any pain.

    Love,
    Kristi

    ~Castle Rock, CO

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  19. Sweet Bella...I'm so glad you had such a good day today. I had to stay up to see how you are doing. I'm praying that you'll have only good days from here on out, and that your Mommy and Daddy can get some much needed rest! I hope that they will be able to get outside for a while tomorrow and soak up some of that warm sunshine we've been having. What beautiful fall weather we've had this week.
    I'll be lifting up prayers for you until I fall asleep. Sleep tight little one, gain some strength so you can open those peepers for a while in the morning to greet Mommy, Daddy and Ali.
    Beth (South Dakota)

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  20. Bella,

    You are such a beautiful little pumpkin! Keep on keeping on! You have an AWESOME family!

    ~~~~~~GO BELLA GO~~~~~~

    Becky (Texas)

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  21. Told you so ! Lots of love from BC (and I love reading other people's locations as well, good idea !)

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  22. Hey guys! Glad to see improvement! I knew today would be a good day for you all! We made a sign for Daylon's bed that said anyone who was gone to touch or had a chance of touching his skin (ie: doing rolls, etc.)needed to put aquaphor on their hands and or gloves. It really helped a TON! Hope it helps Bella out too!

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  23. Hi Bella, sounds like things are getting a little tougher for you, right now. You just keep fighting, Jesus is right there beside you and your Mommy and Daddy. I'm sure it's much easier to sleep than stay awake, but that's what makes you stronger. Daylon is at home, but he is still a little sick, too. You wouldn't believe how much hair and eye brows he has. He is just too cute.
    Things are starting to look a little Fall-ish around hear. The leaves are all turning bright yellow and orange, and the brown ones are falling on the ground. I think we must be in "Indian Summer"right now. It has been in the 70's all week.
    I'm praying and asking Jesus to make you better so that you can make it home by Christmas. You'll have so much fun with your family.
    Try to open you eyes more and look, maybe smile at your Daddy tomorrow. Sometimes, he has to hear things from the doctors that makes him sad. He's fighting really hard for you right now. I've never met you Bella, but I would love to someday. You are such a brave little girl to have to go thru so much. I've come to love you thru this story that your Daddy tells us every day. Maybe, you'll grow up and become a nurse, like me. You can take care of other little babies that have the same condition that you did. I'll bet you would have lots of things to make them feel better. G'night Bella, Hugs to your Mommy and Daddy, and Ali.
    Carla Spradlin, Portsmouth, Ohio

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  24. Wow! So many good news! That's wonderful!

    Bella, isn't it nice not to have wounds and Mepilex on your leg? Isn't it nice to get better and stronger, to open your eyes and to smilento Mommy and Daddy?!
    Come on, little darling, you are getting better. Even if it is baby steps, your loving parents stay by your side and help you. Just keep on going the right direction.

    I am sending a big kiss to the healthy leg! That's what the baby legs are designed for - kissing.
    Tim and Ang, I hope you feel better today and don't forget to take care of yourselves too.
    Sending hope, strenght, kisses and smiles your way!

    Elena
    Bulgaria

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  25. Hello


    This is the first time that i write something here. It's been a few weeks since i started reading you. Just want to let you know that there is another voice reaching God. Please do not stop fighting. You are a strong little girl that has so much live ahead. Do not give up.
    Receive a big kiss and lots of strenght from across the ocean.
    Isabel from Portugal

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  26. Oh thank the lord for better news and better health for you Bella baby!!!!!!!!! I was kinda scared to come today BUT I cannot do that to Bella baby because I am and will continue to root for, pray for, and do whatever I can to help the lord hear her needs.

    Here in Belvidere Illinois it was so pretty today. We decided to take our kids to the park for a picnic.
    We then decided to do something that is pretty tough for me....we took a walk along the river and over the swinging bridge. I know what your thinking right now....whats so hard about a walk along the river!?
    Well its hard for me because I have a hereditary neuromuscular disease called CharcotMarieTooth...basically that means I have a disease very similar to Multiple Sclerosis only CMT is rarely fatal but will eventually land me in a wheel chair. This makes me sad because I can no longer chase after my kids in a game of tag, I cannot take many long walks with them , I feel like I am letting them down. I pray like crazy that none of my kids have this disease but we were told they have a 50% change.
    I was determined to take this walk and send up some thankful prayers along the path. I am so very happy to have spent some quality time with my kids like today because it doesn't happen often due to the severe muscle spams and nerve pain I have in my legs and hands. Times have been tough in the Stacy household since the financial collapse but we keep going one day at a time.

    Bella....keep fighting honey I know you can do it because you are one tough little cookie. Take it one day at a time, slow and easy wins the battle. Even though we have never met I really care about you and have fallen completely into your families life. You and your family are very much loved!
    I am so very proud of the teaching to the people of the world that you have done Bella....YOU 1 little girl has united the world!!!

    Heavenly father hear my prayers....Bella needs your loving embrace, your healing power, your sweet words of encouragement as she continues to fight and journey down her path. Father heal this little girl so that One day, Bella WILL look back and say, "Yeah, when I was born, I had this rare skin condition, but when they brought me home from the hospital, it went away."
    Amen!

    With much love and respect
    Marsha from Belvidere, IL.

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  27. Go bella go! Come on girly, next task is to wake up. Wake up and smile and fight. Hun i just wanna hear about you fighting, I want you to show them that you ARE there that you're mad and upset and want OUT. Show those docs my love!!! Praying for you sweet sweet anabella!
    Go GIRL go.

    karen in az

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  28. Baby Bella, wow great day sweetheart. I was worried about you all day. Everyone is so proud of you for trying so so so hard. I wish it was easier. I bet your daddy knows the Robert Frost poem that goes like this...

    "...and I, I took the road less travelled by."

    Keep travelling belle Bella.

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  29. Dear Bella,
    You are doing an incredible job of fighting and showing everyone who really calls the shots around there. You have so much love and support, your daddy and mommy love you like no other, your big sister adores you, and you have captured the hearts of us people out here in the big wide world. All of us are behind you and pray for you every single day, several times a day, to give you the strength to keep fighting. So when you grow tired, remember to lean on all of our strength out there that is being generated just for you. More importantly, lean on God, He is within you holding you up. I am sure you feel Him, let His energy heal you sweet Bella. I am sorry you feel pretty icky right now, just remember that it always gets better and I believe there are richly sweet things in store for you Bella. I am proud of how well you are doing, always sending love, strength, and prayers to you and yohr entire family. Hugs baby doll.
    Angela O

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  30. Praise God about her leg! And her improvement yesterday! I just cannot imagine how emotionally exhausted you are with all the ups and downs. I know through my children's short stays in the hospital that it is just exhausting to the max. And those were short stays. You are doing an incredible, absolutely wonderful job as Bella's support & advocate...and someday, she is going to look at her healed body & say "Thank you, Daddy!"

    I continue to pray that Bella improves, even if it is just a little bit, and starts climbing the ladder toward healing. Was thinking of you yesterday all day & all night last night, each time I woke.

    Here's to today being a better day!

    Susan (from Pittsburgh)

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  31. Atta girl Bella!! I'm sorry I didnt get to write to you yesterday. I was very very worried after reading about your yucky day. But I just knew, Sweet Bella, that you were just taking a little break and would be better today. I think you like to keep the Dr.'s on their toes, hehehe. That is not a bad thing. I hope you continue to have a good day. Wish I was there to give you butterfly kisses. Lots love Sweet Bella!!

    Love,
    Mary, Lainey, Nick, and Gabe
    Omaha, NE

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  32. Hi Bella
    Your Daddy so so so wrong. And we know he does not like to be wrong, but he is. He thinks we (in this great world wide web)are holding you up and it really is the other way around. Your spirit and the love and devotion your family displays each day holds US up. We all face challenges, small ones and big ones, and we have learned to get educated, get tough and face the challenge head on. And God will provide the peace and the guidance to meet each challenge. Sometimes we show more grace than other times, but you teach us to be patient and take one step at a time. I am grateful to "know" you and I am glad your roller coaster is swooping upwards again!

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  33. Go Bella Go!!!!! Keep fighting girl. Show the world the true miracle you are!!!

    What an uplifting update!

    Tim...when you asked if we could relate to perfectionism the other day...oh boy, could I ever. In fact, I probably would have written the same post and beating myself up all day. Something was said in our RCIA classes the other day and it really it home with me...we can forgive ourselves because the Holy Spirit forgives us. So forgive yourself....you, and Angie and Ali are all doing an amazing job for Bella!

    Barb in NE Ohio

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  34. Dear Bella, I hope you are doing well today and you don't have to work too hard! I know all that independent breathing must be tough for you but I am glad that you are doing it so well! It is a lovely Saturday here where I am and I hope you are having a lovely day too. My Anna is taking a nap right now so this is my time to make lunch, clean up a little, write to you and maybe watch a show with my husband :)We have been watching a lot of BBC shows lately (since I don't understand any of the German tv programs) and Anna likes to watch the Jungle Book on youtube (the Bare Necessities song calms her down whenever she gets cranky). So that's what we've been up to and later today we will probably go for a walk with Anna after she wakes up from her nap. I hope you are getting plenty of rest this weekend and are continuing to improve little by little. Sending love and prayers your way every day.
    Love,
    Laura Valetutto from
    Bergisch Gladbach, Germany

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  35. Continuing to prayer and praising God for the steps Bella is making, no matter how big or small. Believing the Great Physician for that miracle we are EXPECTING!!!!! Much love!!!

    Michelle in KCMO

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  36. Well I guess I *have* to comment again since it's Drs. orders!

    Bella, I cannot really say I am surprised you are on the upswing. Your strength is unmatched. And besides, it sounds like you really like to keep your Momma and Daddy guessing. Silly girl. Rest and heal some more. Little by little. I know you feel the Lord's love and healing spirit all around you. He's there even on the yucky days.

    Love and hugs from West Virginia!
    Katie R. & family

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  37. Oh Bella, I was so nervous to click on your blog this morning, but when I did, chills ran up and down my arms, my eyes filled with tears and THEN I laughed out loud when I saw the silly thing your daddy did with the "to go" cup lid. Wow, all those emotions in a couple of minutes. Way to go, Bella!!!

    Continue the good healing fight today, Bella. I am fighting with you through my prayers and thoughts which go out to you many times during the day.

    Love you little girl,
    Neysa from chilly Denver this morning.

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  38. Way to go Bella! So glad you had a better day yesterday. Lets go for another one today! My birthday is tommorrow, and a great present would be to read that you had another day of progress. Sending positive energy from the Cornhusker State.
    The Cooley family

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  39. Good, GOOD, morning, sweet Bella...

    Whew! I sure was glad to read today's update and I'm just tickled (that's southern speak for really pleased)to hear that your roller coaster car decided to head upwards yesterday!

    And I love the news about your uncovered legs. They're getting ready to be adorned by more fabulous socks, cute tights, and girlie stockings - but not until you're old enough, young lady!

    Jack and Molly's Nana taught you the word "milagra" in an earlier post. Perfecta! If you were in my Spanish class, I would give you that as your Spanish name. Not only is it a beautiful name, but it reflects what we are witnessing here. And we all will give testimony to the miraculous work that God is doing.

    Since it is Saturday morning, Bella, that means I'm writing to you from home. And do you remember what THAT means? I told you last week. Come on...think hard....yep! You got it. It means that I'm again trying to type while resting my arms on my big, fat, boy Sam. He's lying here with his eyes slinted in sleep and his motor is just going...purrrrrrrrrrrr... Oh how I wish you could hear him, Bella. I think your eyes would open wide and then your mouth would break out in a big grin. He's purring because he feels happy and content. Can you make that sound? Try - Here we go...Purrrrr. (Daddy/Mommy - please do that sound justice - tehe!)

    Here's wishing you and Mommy and Daddy and Ali a good weekend. And here's your homework, Milagra - I expect you to continue resting and rallying. And don't forget to practice those kitty sounds!

    Never forget how greatly you are loved. And "Don't give up. Don't ever give up."

    Praying for healing,

    Susan
    A friend in NC (and Bella's Tía Gato)
    :)

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  40. Praying for your family and your sweet girl! May God give you strength, peace and grace as you fight to get your daughter well!

    Love from Michigan

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  41. Bella, babe.... We are all so proud of you. You are such a strong little girl, and I can't wait to see what kind of fireball you are when you become a teenager and then an adult!!!

    So here's the deal: You HAVE to get better. It's the only way. I have been reading your blog for many months now, and the first thing I do in the morning is look at your daddy's update. I live for his updates. And I cry when you're hurting, and smile when you're doing better. I want you to keep getting better, little by little.

    I know it's tough. Your body has been through a lot. But your mommy and daddy and sister need you, and you need them. So you're just going to get better and that's that.

    I am praying for you and loving you in Milwaukee. You have friends everywhere. When you go on your rockstar tour, you better stop here!

    Much love to your mommy and daddy and sister too. They are amazing!

    Tracy

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  42. Sweet Bella, you have so many people on your team. Do you realize how much we love you? And we don't even know you. Tim and Ang, I can only imagine how exhausted you are so I'm sending virtual hugs to the whole family. You are always in my thoughts.

    Now Bella,it's time to step off the roller coaster. Maybe something soothing and relaxing like the Ssmall World ride.

    Love from NC

    ANNA MARIE

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  43. Sweet Bella ~ I am SO SO SO excited to read your day was better! Praise God! You are such a beautiful girl and we are so anticipating the day when you feel well enough to wake up and crack us a smile! Your sweet family is amazing and their love for you just shines through in their dedication to have the very best for you! I am sure impressed with their care. Your beautiful big sister loves you so. I can't wait to see pictures of you two playing and laughing together! I pray for you and want you to know how much you are loved! Yes, the world wide web has fallen in love with you but Jesus loved you enough to die for you! You are worthy and you are precious and you are LOVED!!!! :) Praying your day and your family's day is WONDERFUL and full of healing!!!
    Lots of love, Michelle
    /Houston, Tx

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  44. Sweet Bella, I'm so happy to hear about the great day you had and will pray for another great day today. One day at a time. I was a little scared yesterday and nervous to check today, but YOU are amazing my Dear. Your family is amazing as well. I can tell that your big sis is ready to have some fun with you. From all your Daddy's posts I can see what a playful girl she is and you are going to have so much fun together. Tea parties, playing dolls, sharing secrets, I just can't wait to see you enjoying your family. Just make another tiny step forward today Bella.

    The leaves are beautiful out right now, but soon the snow is coming. And while the snow is pretty and I think you would enjoy playing in it, I'm hoping/praying you will be going home before that. Sort of my goal for you - home by Thanksgiving and feeling good.

    Tim and Angelique you so need a break. I know you are more then worn out but hopefully it is all positive here on out. Hopefully as Bella gets a little better each day you can get a little more rest. I had to laugh when I saw the to go lid on your drink. I did something similar when my daughter was a baby. I was sleep deprived - by no comparison to the sleep deprivation and stress you are under day in and day out. Soooo I'm also praying for strength and your ability to keep going full force every day to get that sweet girl better. Love and Prayers, KD, MN

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  45. Bella- we love you so much sweet girl! Still praying in PA!

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  46. I wasn't worried for a second. (If you believe that one, I'll tell you another!)

    I'm SOOO happy Bella had a better day. Our love to all!

    Bonnie in OH

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  47. A big thank you to Little Miss Pumpkin Head Bella!!!!! You are so full of tricks and treats. I too, Bella, was almost afraid to open up your daddy's book this morning, but I also keep in mind every day what your Grandpa used to tell us, "The road to recovery is never a straight line." He is right of course, but you are carrying this just a wee bit far. Where do you get the energy? Now, here's the deal. We'll all keep riding this roller coaster, but after Halloween, no more tricks OK? Thanksgiving is the next biggie, and that is what we expect to be doing - giving thanks to God for your increasingly improved health. (And beautiful legs!)

    Someone wrote earlier and used Jesus' name. Come to think of it - Jesus loves little children. God sends His Child to help you too. You will study all about that some day. I have to tell you something funny Bella. Maybe your mommy and daddy will get a much needed laugh from this. And hopefully Uncle Michael, if he is reading will smile too. Before your Uncle Michael cut his long hair off, he used to look a lot like Jesus. Of course I never told him that, but my sister and I would look at each other sometimes and say "Doesn't he look like Jesus!?!?" So someday mommy and daddy, or even Uncle Michael, will show you some pictures of him "back in the day" so to speak.

    Well, beautiful little one, be a very good girl today. Can't wait to see you smile and play with your big sister Ali again. Oh one more thing. When your Uncle Ryan was little, he was a lot like your sister Ali. He had a flair for the dramatic that presented itself especially so while having his picture taken. Just like precious Ali, he was not usually one to just sit and smile politely for the camera - he did little boy things like pull his mouth wide apart and stick out his tongue. Or spread his arms wide like airplane wings. Maybe we can get him to demonstrate someday huh? Maybe Ali and Ryan could be in the same picture doing funny things together!

    That's all for today Bella. Tell your pretty sister hello from Kansas. Have an awesomely healthy day. Hugs hugs hugs to all, Terri

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  48. So glad to see things got a little better yesterday. I'll admit to being a little afraid to open the post as well. What a rollercoaster. I feel so invested in your life, Bella. It feels odd when I'm talking about you to someone else, to say, Well we don't *know* her, but we love her! My daughter and I love to look at Bella's pictures and my Juliana is Ali's age. She keeps saying how she would love to play with her. Here's to hoping your Saturday goes well and you have a peaceful weekend.

    Krystiana from ME

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  49. Ride Of Life Lyrics by 4Him from The Ride album

    The wheels of life are turning
    I feel I'm rolling down this track
    And I know down deep inside my heart
    I can't look back

    And though it's hard discerning
    All of the fiction from the fact
    You have led me to this truth
    And we have made a pact

    And as we go through highs and lows
    And all that's in between
    It's good to know we're not alone on this
    Big scream machine

    CHORUS
    This roller coaster ride of life
    Lifts you up and lets you down
    This roller coaster ride of life
    Spins you round and round and round
    Heaven knows wherever you go
    I will be right by your side
    On this roller coaster
    Roller coaster ride of life
    Roller coaster ride of life

    So, when I hear you calling
    'Cause you have hit your all time low
    I will hold you to my side
    And I won't let you go

    And when it seems you're falling
    'Cause life has got you on a roll
    I will take the wheel and hit the brakes
    We'll take it slow

    And as you go through highs and lows
    And all that's in between
    The Lord alone is in control
    Of this big scream machine

    REPEAT CHORUS

    As you daddy has been writing about you to me, this sound keeps coming to my mind. Yes the roller coaster ride of life. That God is in control. Glad HE is today and not me.

    Thank you God for this journey, with its ups and downs. That You are in control. That You will take us were we need each step of the way.

    sg - KS

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  50. "Would you tell me, please, which way I ought to go from here?"

    "That depends a good deal on where you want to get to," said the Cat.

    "I don't much care where--" said Alice.

    "Then it doesn't matter which way you go," said the Cat.

    "--so long as I get SOMEWHERE," Alice added as an explanation.

    "Oh, you're sure to do that," said the Cat, "if you only walk long enough."

    - Alice's Adventures in Wonderland, 1865

    Bella -

    We grownups live very linear, scheduled lives, and we measure and qualify everything. I'm so thankful that you're too young to be burdened by concepts such as time and good days and bad days.

    You're the leader on this journey. We're all on "Bella time." Travel at whatever pace you need to go to build up strength. All of the people who write to you do so to let you and your family know that you are not on your journey alone.

    Angela Ulrich
    Dublin, Ohio

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  51. Dearest Bellagirl;
    Sorry for not commenting yesterday. Here in the cheese state (wisconsin) it was 75 out and I went to the zoo with my son's second grade class, then I headed straight to work. I"ve been pretty tired, but still thinking of you.
    Did your daddy ever get the email I sent him of the pictures of my children with butterflies behind you that said they were praying for you?
    You do your thing, at your own pace...slow and steady wins the race my dear.
    I wanted to share one of my favorite poems with you.

    After a while
    you learn the subtle difference between holding a hand and chaining a soul
    and you learn love doesn't mean leaning and company doesn't always mean security.
    And you begin to learn that kisses aren't contracts and presents aren't always promises
    and you begin to accept your defeats with your head up and and your eyes ahead with the grace of a woman, not the grief of a child.
    And you learn to build all your roads on today because tomorrow's ground is too uncertain for plans and futures have a way of falling down in mid-flight.
    After a while you learn that even sunshine burns if you get too much
    So you plant your own garden and decorate your own soul instead of waiting for someone to bring you flowers
    And you learn that you really can endure, that you really are strong and you really do have worth and you learn and you learn
    with every good-bye you learn.

    this has so many meanings to me, I think the part about being strong holds true to you. You're tiny , but you're strong.

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  52. Hi Bella

    Way to go girlfriend. Keep riding the ride BUT today lets make it the Train ride around the park. Nice and even, no bumps, enjoy the scenery, and do some good resting.

    Leslie, Louisville KY

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  53. Bella: Today is going to be a great day! The sun is shining and the birds are chirping. The windows and doors are open letting the fresh air into our home. As I look outside our pool is sparkling blues and greens and there is dew on our grass. The grass is so beautiful! I'm Very Thankful to have a whole 1/2 acre of grass in the desert! We are thankful for Fall. Even though the leaves don't fall and it's always the same color in the desert. It's Saturday morning and the kids are up early trying to defeat a Star Wars Lego game and watching playhouse Disney Special Agent Oso. So Bella what shows do you like watching? If you ever get a chance to watch Playhouse Disney the show is really cute! I'm so glad to hear that yesterday was a good day. I'm so glad to hear some good news coming from your room! This Morning Benjamin asked about how Bella was doing and I told him you had a good day yesterday. He then smiled! Benjamin also said Ali is very silly! I know weekends in the hospital are slow and so I hope you have a relaxing weekend. Love the Josephs AZ

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  54. Bella,

    I thought about you all night while I was at work at the hospital, I thought about how I wish I could invent a cure for you through gene therapy. Thought about how strong your parents are and how brave they must be to endure all this. I thought about how lucky I am to have two healthy boys, Mostly though I prayed for you to have continued strength, to prove all the medical professionals wrong, to wake up and smile at your Mommy and Daddy. So Bella stay strong. keep fighting, you can do this. I know you can, I see miracles every day. Show the world your Miracle recovery.

    Keep it up

    Lisa
    Houston, Texas

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  55. Bella,
    Your strength and fight are an inspiration to us all! Keep moving UP the roller coaster, we are all riding with you!!

    Hugs,
    Sarina
    Salt Lake City, UT

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  56. Gma Alice in CaliforniaOctober 9, 2010 at 8:41 AM

    WooHoo!!!! Way to go Princess Bella :) What a blessing to check in on you this morning and hear the great news that you have once again shown us all what a "miracle" you are. PRAISE THE LORD :) We have a busy day today but YOU will be in our thoughts and prayers throughout the day. We love you Bella. Keep up the good work. Tim, Angelique and Ali ... you are all so strong and such an inspiration to us all. May God bless you and uphold you all as you tackle a new day. Love and hugs ... GMA Alice

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  57. What a sweet photo! Sending oodles of healthy thoughts, love, and hugs to your family!

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  58. A few years ago, my mom sent me a card with this quote on it:

    "Every passage has it's beacon. Every shadow has its light. We must therefore keep watch my friend, keep watch" ~Captain Brenner Tate

    I liked the card so much, I framed it. It has been on a dresser next to my bed since the day my husband deployed to Iraq. It sat there through the entire year he was gone and was there to welcome him home, safe and sound. May it bring you the same light it brought me.

    Love from WA

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  59. Bella, you may be sleeping more than you should right now, but that's only so that when you wake up, you will be stronger than ever before! You are one of the strongest baby girls I know, so just imagine how fierce you are going to be when you wake up!! It will be awesome.
    You are in my thoughts, my prayers, my days... you and your family, your fathers never-ending fight for you, your hard-working mother and your incredibly brave older sister. Together you make the most amazing team!!
    May God watch over you and bless you, may He give you strength and perseverance.

    Jennifer
    Sweden

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  60. Glad to hear you had a better day today. Hope tomorrow is at least as good.
    Martina, UK

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  61. Yay Bella! Glad that you were just having a "bad day", as opposed to something else (infection) brewing.
    I'm extra excited today, because my boyfriend and I just scored last minute tickets for the Chicago Blackhawks home opener tonight! They are raising the Stanley Cup Banner tonight, so it's going to be an awesome experience!
    Hope you are enjoying a nice relaxing weekend - no more funny business with having bad gasses!
    (How high did the CO2 get? - just curious!)

    Jess
    Chicago, IL

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  62. Hi sweet Bella! I just wanted to stop by and say hi! I hope you are having a good day today!! I cant wait to her what your daddy has to say tonight! Keep up the good work sweetie! Stay strong!! Im praying for you!!!

    All my love,
    Sarah in Colorado

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  63. YEAH Bella!!! You go baby girl!! We love you and we'll never stop rooting, cheering and fighting for you!! Even Dr. D is on your side =) You will get better and one day you will look back and say, "yeah, I had this rare skin condition when I born, but it when they brought me home from the hospital it went away." Yes, I believe.
    love,
    Emily
    Ft. lauderdale, FL

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  64. Just over from Kristy's blog and wanted to let you know that we are praying for Bella in Ohio. I feel honored to have met your sweet daughter today in blogland...and to have learned a little about your amazing family.

    Praying today, for healing, strength, provision, comfort, grace, and love to surround you as the Lord continues to carry all of you...every step of the way...He is faithful!

    Love and Prayers from Ohio,
    Kelly Gerken
    Sufficient Grace Ministries

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  65. Sweet Bella,
    You are a strong little girl, you are soo special, do not give up.

    See you tomorrow ...

    All my true Love and Prayers
    Sandra from Portugal

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  66. Lamentations 3:17-26
    I have been deprived of peace;
    I have forgotten what prosperity is.
    So I say, "My splendor is gone
    and all that I had hoped from the LORD."
    I remember my affliction and my wandering,
    the bitterness and the gall.
    I well remember them,
    and my soul is downcast within me.
    Yet this I call to mind
    and therefore I have hope:
    Because of the LORD's great love we are not consumed,
    for his compassions never fail.
    They are new every morning;
    great is your faithfulness.
    I say to myself, "The LORD is my portion;
    therefore I will wait for him."
    The LORD is good to those whose hope is in him,
    to the one who seeks him;
    it is good to wait quietly
    for the salvation of the LORD.

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  67. Dear Bella,
    I spent my 23rd birthday doing some things I really enjoy - reading, taking naps, eating pizza, AND praying for you. I asked all of my friends to visit your blog and I heard from at least five of them who did.

    I am so proud of you for all the progress you made today! You are an amazing girl! Keep up this strength - we are all behind you 100%.

    You are in my thoughts and prayers. Tell your dad to keep up the good work too... he's a pretty amazing guy. But then, I've noticed that most dads usually are. :)

    Until tomorrow, sweetheart.

    Sarah in Michigan

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  68. GO BELLA GO! GO BELLA GO!

    That is my cheer! Miss Bella I put you in the church prayer book again tonight, like I do each weekend and I know many people in my church and many of my facebook friends are cheering you on and praying for you sweet girl. You have to keep moving step by step forward to getting better and stronger. So glad Friday was a stable day for you and SUPER excited to hear that mom & dad have removed a layer of bandages on your leg. Your skin does look awesome!

    We did a bunch of yard work here in NJ today. It was such a pretty day and we cut all the dried up summer flowers down (that made me sad to do), but my butterfly bush is still blooming and it had a ton of small whitish yellow butterflies having a picnic! Of course I thought of you and the day you will say: " I had this rare skin condition, but when they brought me home from the hospital, it went away."

    I am also sending positive energey, strength and prayers to Mommy, Daddy and Ali.

    ALl our prayers - Tina in NJ

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  69. Way to go precious girl. Keep turning the corner and climbing the mountain. I am so proud of all you are teaching the dr's and nurses, and blog following friends. I hope today is a great day for you. I am continuing to pray for your improvement and for the comfort, support and peace of your family.
    Lauren in Spring, TX

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  70. You were the first thing I thought of when I woke this morning. I was anxious about reading your news. I am overjoyed to find that you've improved so much. You sure like to keep us on our knees, little girl. Many prayers went up for you yesterday!!!

    We had a beautiful fall day here in SC. The kids had friends over to play and only one ball is on the roof, so all is well. :)

    My Clemson Tigers didn't win their big football game but the South Carolina Gamecocks did. It all evens out.

    We continue to pray for all of you! The Goodsons from SC

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  71. Bella! It's warm here in Kansas City...fall is coming in gently, beautifully. The leaves are gorgeous...Next year, you should come back to the land of 4 seasons and see them change. I don't think that palm trees change color in the autumn. :) Or maybe they do? I dunno...
    In all this beauty...all this glory of God's creation...I am praying for you. That, like the seasons, you change and heal and become. That you shed the old skin, like the trees shed their leaves, and emerge from your "winter" of sleep a beautiful, strong little child.
    You have taught me much about life...and yet, you have never spoken a word. Amazing...
    Sleep tight Bella girl...we are praying...
    Kathryn in Kansas City, MO

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  72. Praise God! He is SO good!

    Love you guys, and praying for Bella every night.

    Darcy
    North Dakota

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  73. I continue to pray along with you and your family. I admire the strength that you have. As I posted once before I found you through Tripp who also is having a very tough time of it now. Keeping Bella and Trip uplifted in God's name.
    sbf in louisiana

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  74. So glad to hear today was an up day for you little one!

    May the journey only continue to go up!!

    Love in Boston

    Tamar

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  75. It's been a busy day or two at our house. I have been canning chicken. I am attempting to fill the shelves back up. (We've been unemployed for 6 months now.) I enjoy canning. Hours of sitting on my barstool watching Jane Austen movies chatting with whomever happens to pass through the kitchen.
    This is the first canning I have done this year.
    The air is turning cool and winter is coming.
    The beautiful mountains have turned their colors.
    Hang in there little lady.
    Cheryl

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  76. Continued prayers are being sent for Bella. I was so very worried after yesterdays post. I am happy to see our prayers working for her. Keep it up Bella. Specific prayers being sent for her organs to heal quickly. We all love you Bella!! Stay strong baby!!

    Paula T Little Elm TX

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  77. The prayer energy sent out into the universe does seem to ebb and flow as needed by Bella. What a beautiful thing. God is good.

    Continuing to think of and pray for you frequently during my day.

    Elizabeth
    Amarillo, Texas

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  78. OK Miss Bella! I just returned from our 6 hour drive from Disneyland. Like I told you I would, I stood at Snow White's grotto. It's a fountain to the right of the castle and it has Snow White and the 7 Dwarves in white stone. It's very lush and peaceful. I made a wish for you, bet you can guess!! I was looking forward to reading your Daddy's blog. I started with today and was happy to hear you had a good day.

    You have such devoted parents and such a fan club. Most of us can not imagine what your family is going through on a daily basis. You are such a lucky little girl that God gave you such amazing parents and sister.

    I know inside your little body is the MOST amazing spirit that is just busy as can be healing your body. You are doing great Bella.

    Tomorrow my little boy and I are going to church in the evening and I will be focusing my prayers on you and your family.

    Hey! I forgot to tell you, the "one fish" lived!! He must not have been out of the bowl very long. My friend said we need to rename him "Lucky."

    Kim
    California!

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  79. Prayed for you today sweet precious girl and familiy - thought I'd stop back by for another check in before I went to bed. I hope today was a day full of rest and progress and healing and wowing the dr's who are 'out of ideas'. One of my repeating prayers for you and for your family is that God use this situation and experience to undeniably show that HE is in control and that there are some things ONLY He can do. In the meantime I pray that y'all are comfortable, supported, healthy, rested, and at peace.
    Hope today was miraculous - and that tomorrow surpasses all imagination because HE is and HE DOES.

    Lauren Betchan in Spring, TX ( a momma in sprng)

    And if you were wondering what we did this weekend we went to the Houston Greek festival and ate too much food. We went to church and fed the ducks and cooked Cauliflower Soup and Sowthwestern Chowder. I'm about to go dig up some pumpkin shaped sugar cookies if my girlies left any and then I'm going to take a shower and pack for a business trip. UGH. But at least I should get to sleep through the night right?

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  80. I have been ready about your special girl for a few months now via Jonah, I was shocked at the news today. Hope for healing for your family.
    Missy McNeal

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  81. I don't know how you can write so eloquently with what you are going thru, but Bella was blessed to have parents like you and you have created a wonderful history for your family with all of your posts. I'm so sorry for your loss. May God keep you tightly wrapped in his arms right now.
    Jeff and Nicole Cassens

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