Tuesday, October 5, 2010

October 5: Day +95


Oh, the roller coaster continues!

It was like deja vu today! Morning blood pressure in the toilet, fluid, pressers, stimulation... and poof! an afternoon and evening of STELLAR pressure... drop the pressers back, pull the fluid back off, and end up back at square one! Oi vay. It's an emotional roller coaster, I tell ya!

So, I've been asking the attending BMT doc about other off label drugs we might be able to use for Bella. Are there other cytokines like VEGF that might be elevated that might have a drug that treat it? A cytokine is essentially a messenger protein floating in your blood. Well, turns out, Bella's TNF levels are really, really high. TNF is a cytokine that induces inflammation, and is the "master receptor" for inducing inflammation. Hmm.... inflammation induces leaky vessels. So, if we can lower her TNF levels, we may end this dance once and for all. Sooo.... turns out there is a drug called etanercept that is used often to lower TNF cells. Sooooo....... tomorrow morning, we break out the etanercept! It is very exciting to working with doctors who are willing to think outside the box and treat the patient that is in front of them, not in a book. This idea is coming from the same doc who wrote her off upon his first visit... you remember... Dr..... D...

I don't call him that anymore, because he has been on board, thinking, researching, and working for Bella for the duration of his rotation, and we have long since gotten over butting heads that first day. I wrote him a long letter of thanks and apology about a week ago and we are on the same team now. There's a great saying I learned long ago....

"Would you rather be right, or productive?"

One of the best gifts I was ever given was a free ticket to the seminar "The Landmark Forum" back in 1998. In that seminar, I learned (shock) that I am not always right. LOL. I learned that it was in fact plausible that in areas of life that weren't workin' so hot, that I might be the one who was "wrong," for lack of a better term. That was really liberating, because being terminally right had cost me countless relationships. Angelique was the first woman I dated after doing that seminar, and I know that she never would have put up with me if I tried to pull "being right" all the time on her! Instead, our relationship is built on partnership, respect, love freely expressed, and dreams realized. A pretty cool foundation.

So, I was happy to apologize and give up being right about him so that we could create a working partnership that would benefit Bella. You could call it "swallowing your pride," "putting your ego in check," or whatever. In order to have any relationship improve that is tanking, someone has to take the first step and be willing to give up being right in order for there to be any room for a new relationship to blossom. Whether or not you really are right is irrelevant. Like the saying goes, "Would you rather be right, or productive?" Said another way, "Would you rather be right, or in relationship?" Bottom line, you always have a choice.

How cute is the pumpkin hat? Thanks to Janet (Jack and Molly's Nana) for knitting all of us hats for the winter, and for infusing love and a prayer into every stitch. What an amazing thought... someone hand stitching something over hours, praying and loving the whole time. I never saw sewing or knitting or crocheting in that light before. Thank you, Janet, for opening my eyes to something so wonderful.

So, tomorrow, we throw a couple of new stitches into two of her lines where the stitches have either fallen out or have been pulled out (ouch - good thing for sedation and pain killers!) We also have a scheduled Prisma circuit change, and arm and ulcer dressings. It will be kind of a busy day.

My favorite part of the day? Reading your words of encouragement to Bella. In fact, I humbly request that more of you write to her. Please, come out of the word work! You invest the amount of time (really only about 2 minutes) to read about her every night, please invest a couple more to write to her! It is the one time of the day that I really feel like a parent. I get to turn my heart on and pour out my love through your words. I promise you... I read each one of your posts with as much intention and feeling as I can, as if I was the author, as if each word were medicine for her mind, body, and spirit. I am so touched by the generosity of your love, kindness, authenticity, and support.

(Don't worry - I don't read her the occasional oddball comments - she doesn't need that - there are a few in every group, and since statistically speaking, if there are around 1,500 hits a day here, we're bound to attract a few goofballs who think negative comments and criticism somehow will either influence me or improve the situation to their liking... silly people :P)

Anyway, I spend either a chunk of the morning, or afternoon, depending on Bella's energy, holding her hand and/or head and reading to her. When I am doing all of the wound care and various other things to her body, I have to turn off my heart so that I can think and act objectively, clinically, and clearly. For example, when I have to change her trach dressing, whew, that's a tough one. I have to slide this big 4 inch by 4 inch dressing under and around the trach while someone else holds it in place. All the while, Bella is craned back on a roll under her shoulders to expose her trach site (It doesn't see the light of day in any other position due to her fluid overload). This position makes her trach squeak and it makes just this very weird, 'not-normal' sound. I have to just think about the dressing in my hand, and the trach it needs to line up exactly under. I can't think about whose trach it is in the moment. I wouldn't be able to function. I'm sure in time, it'll get better, like dressing changes did. I imagine it's no different for someone who has to get used to changing a colostomy bag, an artificial limb, a glass eye, etc. At first, there is the shock of adjusting to what might seemed pretty messed up at first, but after time, it becomes "the new normal." Anyhow, until the trach is normal, I have to clamp down hard on my thoughts and feelings in order to do my job.

However, when I get to read to Bella, all of me gets to be with all of her. This is that very normal, natural relationship any parent wants to have with their child. I could read her any old story and I have done that many times, but Angelina Ballerina is not written for her, to her, with the intention of energizing, supporting, healing her. Many people wish there was something they could do to help, to contribute. Well, here are two things.

1) Write to Bella.
2) Sponsor Team Bella in the CHOC Walk. CLICK HERE to do that.

With your help, one day, Bella will look back and say, "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away."

Bella's fabulous socks of the day!

God night.

Ali rockin' to Katie Perry on the Wii "Just Dance" game last night...

This was voted simultaneously the best pose from Ali and the worst dance move ever from daddy by mommy and Bella's night nurse, Linda. I promised I'd post the silliest one... Guess I can never run for public office now... especially because... we were dancing to... The Spice Girls... Yup. It's true! While I didn't pick the song, I didn't sit it out, either. I somehow just felt dirty afterward.

Ali with Annie the therapy dog and a fellow RMH guest tonight...

Arts and Crafts night here as well tonight!


  1. Hi again!
    Bella you look sooooo cute in your pumpkin hat! Does Ali have one too? I'd like to see her picture too.
    I had to laugh at the dancing picture, because my grandkids have that same game and I'd be pretty embarassed if someone took a picture of what I look like dancing to some of those songs! It would not be a pretty picture!
    I hope your Dad's idea helps tomorrow and you start feeling better. I'm still praying for you.
    Lots of Love,

  2. So....you realize you probably made my moms day, posting a picture of Bella in her pumpkin hat, right?
    bella...don't you think we ( your dad, mom, sister, and I), need to work on a childrens book about EB? Why not? I have always wanted to illustrate something publish-able ( totally made up that word)...gotta start thinking about that.
    Team Bella is rocking....it's the best captain-ing I've ever done....15 walkers and over $2,000! We've met our goal, but I like to show off...I wonder what our magic total will be...
    I love the picture of your daddy dancing. We just got the Wipeout game for our Wii. Haven't tried it, but I'm sure it's silly, too.
    It's the second day of rain here, but I welcome it. I needed to feel fall...
    Hope tomorrows trials are just what the doctor ordered. I think dr. Doom needs a new name now...

  3. Miss Bella, You are being so brave and I pray for you every night! Stay strong! I so look forward to a video of you at 5 or so saying, "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away." That is my dearest wish for you, sweet baby.
    ~abby in TX

  4. Hi Bella, my name is Rebecca and I live in Sydney Australia (I have written to you before). I have two daughters a 24 year old and a 9 year old (I know, I know, huge gap - it's a long story that can only be told over a glass of wine and you are too young to drink). My eldest daughter is now living in America (New York) I would love to come and visit you one day. I own a children's clothing shop so I could bring you lots of fun stuff to wear. I hope when you get to boss people around that you like girly frou and frills (my girls don't).

    I just want you to know that I am praying for you every day. You (and your dad and your mum and sister) are such an inspiration to never give up, to persist but to do so with dignity and the occasional roar (the occasional roar is good and indeed very important).

    All children should have a daddy like yours, one who is prepared to stand up and fight with every breath he has in him.

    Love to you and your family,

    Bec xxxxx

    God Bless little one, I cannot wait to hear you say the words 'one day................'

  5. Sweet, precious, beautiful gift from God, Bella - you are an inspiration and you have many people praying for you and loving you around the world. Keep fighting and making each one of us proud. You are truly amazing! My son, Fox, gets extra hugs and kisses each night because of you. You will come out of this stronger and healthier -- I just know it! Your mommy, daddy and sister need your precious light in their lives. Your journey enriches us all more than you can know! Love from Tennessee, the Gladstones

  6. Sweet Bella! You look soooo cute in your pumpkin hat!! I dressed my Bella up in a lamb costume the other day.... she didnt know what to think about that! ha ha!! Im excited for your new medicine tomorrow! I will pray for you that it works!! You are the strongest, bravest little girl that I know! and one day your going to say....
    Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away

    Tim... thank you for opening my eyes to "always being right" I find myself trying to prove that I am right way to often. You are 100% correct... I do have a choice... =0)

    I'll be praying for you guys tonight! I hope everything goes well tomorrow!!

    God Bless!!

    Sarah in Colorado

  7. Bella,

    I love your socks of the day. I was just reading One Fish Two Fish to my girls yesterday! And your pumpkin hat is very cute. I like the idea of someone loving and praying for you the whole time it's being made. I'm sure when you wear it you can feel that. Such a wonderful story.

    I hope you rest well tonight and that the new drug tomorrow is helpful. Sleep tight Bella!

    Love from Texas.

  8. Bella,

    Keep fighting, little girl. We are still rooting for you here in the desert.

    It finally has cooled off here. We had a great storm tonight and now that it has rained and isn't in the 100s, it feels like fall. I love October. That pumpkin hat is so cute! I wonder what you'd like to be for Halloween? My little boy Ari that I told you about is going to be a pirate. He likes to say "Aaarrr!" (Your dad better do his best pirate impersonation to give Ari credit.) ;)

    Keep going sweetheart. Hope tomorrow is a good day for you and the new drug works wonders. :)

    Cara (and Ari and Sean) in Tucson

  9. Mornin Bella,

    There are so many things I want to say to you. When I saw your daddy holding you in that sitting position, a song came immediately to my mind and has been running thru me for two days. It is an oldie and it is called "Oh you beautiful doll, you great big beautiful doll" Maybe, if your daddy knows it, he will sing it to you. When I was little(a long, long, long) time ago" I had a baby doll I loved and she looked just like you. There is another song that I keep thinking about It is "Turn on your heart light" which is what you have been doing. You are sooo strong. I remember seeing a video of you with your big sis Ali on the bed together and your arms were going up and down so fast, better than I have ever see anyone do. I could almost hear your giggles. Another thought that keeps going thru my mind is when you decide to wake up, you will probably be speaking in full sentences since your daddy and mommy are always talking to you. That's how we have all learned. Keep hanging in there and loving your family as they love you. I send another bag of kisses for them to blow on to your cheek. When you feel it, that is a big smooch just like I saw Ali plant on your cheek. Kisses are really good for us.

    Tim and Angelic, I send words on breathing to strengthen, revive and bring peace to your souls. Breathe in all those good things and then exhale all the worry, fear, fatigue. When they are gone and the lungs are open, pull in strength, peace, hope and courage. It works pretty well when we put our minds to it.

    Ali, I didn't know you like ladybugs. I do too. One day the little girls next door were here and asked if they could count all they see. They even went upstairs and came down with a count of about 40 of them. Can you imagine? When Bella is well and you are back home again, maybe you could come over and count. Who knows? There may even be more.

    Love to you all, Greenie

  10. My compute ate my comment before I could post it. Ugh.

  11. Dear sweet Bella...what to do with you. You have one very smart daddy "working" for you. You are a very lucky girl. :) That hat is FANTASTIC. I wish I could knit so I could make one for my little girl. Ok, and those socks...too cute. Rebecca's comment got me wondering...will you be a girly girl or not. I cant wait to see. I already know my daughter is a girly girl. She carries around a purse and loves on her dolls (she is only 14 months old). :) I will be thinking of you all day tomorrow sweet peanut. Sending my love as always...can you feel it? xoxox

    Thinking of you all tomorrow and praying this drug is the answer to so many prayers.

    Denise, WI

  12. Jack and Molly's NanaOctober 5, 2010 at 10:03 PM

    I think you need to change Dr. D's name to Dr. Double D - for Dr. Due Diligence. So happy to hear that you're seeing eye to eye lately and are both willing to NOT be right all the time. It's a tough lesson to learn but a valuable one -for BOTH of you.
    I'm thrilled to see your pumpkin in her hat! I was clueless as to what size to make; looks like it worked out OK for her - yay! And correct me if I'm wrong, or if you just got a different angle, but to me her face looks a bit less puffy today.
    Looking forward to a great report tomorrow! And,thanks for again plugging Team Bella; Sara has worked really hard to get the group together and they've done a great job of fundraising so far! Go, Team Bella!

  13. Bella! Keep going strong little lady!! I love the Dr Seuss socks (One Fish Two Fish is my fave book by him)!! Keep on Styling Girl!!
    I've been reading up in CLS and all the other medical issues you have had (thank your daddy for being so thorough in his explanations). I have a Medical Background and from a clinical view find your journey very interesting and educational. I also have faith in my knowledge that everything you have gone thru medically is something that can be (and will be) overcome. (BTW you and your family will be happy - I hope - to know that i will be doing a term paper on EB for a class in Clinical Medical Technology I'm taking right now so that i can help spread the word about this horrible disease - the more people in the the Medical Field that know - the better right?).
    As a parent though, i am amazed at the strength you and your family have shown through this terrifying experience. Your whole family has my respect and prayers every minute of every day. Just remember that your Momma, Daddy, Big Sister, and Hundreds of people all over the world LOVE YOU and Pray for you constantly. It makes me sad that you must suffer to bring love to others, but i have faith in you and God that you'll make it thru. And know that you have touched so many and changed them for the better. God chose this for you and your family, I believe, because he knew that you could show so many how to love and appreciate everything they have in life. Know in your heart that you can overcome this mountain, and that the sun is shining on the other side.
    Thank you Bella, Tim, Ang, and Ali for showing me and so many others what true love and strength is. There will never be another day that I look at my children and not thank God for everything I have. I think I took them for granted for way too long.
    I look forward to the day when your swelling goes down, your pressures stabilize and your Daddy posts a picture of your beautiful smile again, its been too long since we've seen it.
    One day you will say "yeah I was born with this horrible skin disorder, but when they took me home from the hospital, it went away"

    Mary - from MD.

    P.S. - Tim ... PLease know (in reference to that horrible comment the other day...) that Bella is at an age where she will not remember the pain and suffering she is going thru, and studies have shown that children her age seem to be able to "pause" or "hibernate" their emotional, psychological and social development when going thru something like this, and then pick up where they left off and develop normally and catch up with no problems. In all honesty, young children are stronger and more resilient than any other age group. Have faith that you have made and will keep making the best possible choices for your family . <3

  14. Baby Bella and Family...
    I am not sure how I even came across your blog, I can only assume it was on someones Facebook post. I have been following you now for a while and I think about you all constantly, your family is in my prayers and thoughts through out the day. My daughter who is two loves to peek over my shoulder and see pictures of you Bella.

    From what I have gathered you have an AMAZING and strong family and friends who are all there for you. I have thought of writing you many times but have never figured out what to say...then I decided it didn't really matter...other than letting you know that you have someone praying for all of you from Durango, Colorado.

    Bella I can't tell you how much you have changed my life, you are a strong little lady whom knows what her job is here on earth, and you lovely little lady are fulfilling it, whatever exactly it may be. I know you have taught me to not take the little things for granted, I cherish the little things everyday now. I pray that you are feeling better soon, I wait for the days when I can read your blog and show my daughter pictures of your laughing and playing with your sister and mom and dad. They love you very much you know, it's very evident in the way they care for you, look at you and write of you. So get all the sleep you need now, cause you are going to need it soon to play with your sister!
    Love and prayers in Colorado,
    Amanda and Noa

  15. Dear Bella,

    I love your new hat! You look adorable in it.

    I've been meaning to write to you for a while and let you know how wonderful I think it is that your daddy reads you all of your comments. It's heartwarming to read the love that's written in your dad's blog, as well as in the comments your readers leave.

    I want to tell you a story about myself that might give you an idea of how deeply you (and your daddy reading to you) has touched me. I'm a twin, and when my mom was pregnant with me and my sister there was a problem with how our blood vessels connected up. It meant that my sister's brain didn't grow properly. She survived even though her brain was the size of a walnut -- that certainly surprised the doctors! Like many people with severe disabilities, my twin was prone to pneumonia. When we were three, she suddenly got very sick and developed septicemia. She was in the hospital all hooked up to tubes, wires and a ventilator. To borrow one of your daddy's phrases, her vitals were in the toilet.

    The reason I'm telling you this story is because of what happened next. My mom sat next to my sister's bed, picked up her hand, and started talking to her even though she wasn't showing responses to anything. The situation was not good. When the nurse turned around with a look in her eye, my mom asked if it was okay - she was worried that maybe she had dislodged a tube or wire. The nurse watched the numbers on the monitor improve and said, "No, don't stop. She's responding to you. Just keep doing that!" My sister did get better after that, too. (Just like you will!)

    I've always felt that this story is proof of how tuned-in my sister was to the people who love her. She couldn't walk or talk or communicate but that didn't change how much we loved her. She just had to use her own ways to say "I love you, too". And I honestly can't think of a better way to say "I love you" than by responding to a loving message or a warm touch.

    So for me, knowing that your daddy reads messages of love to you each day is especially beautiful. Not just because he clearly loves you more than words, but because you've inspired so much love in others. And I truly believe that love can heal.

    Breathe, listen and heal, Bella, knowing that you're cocooned in the love of thousands.

    (from Vancouver, Canada)

  16. Hi Bella Doll!
    I love the hat...and I especially LOVE your blanket! Whenever I see picutres of you with the blanket, I get the biggest smile across my face! I need to find you a few more butterfly blankets, winter is a comin'! I'm sorry that I haven't sent in the colored butterflies yet, Christian colored about 7 butterflies for you. I promise that I will make it to the post office this week and send them! Sleep tight little beauty, and as always, we are praying feverently for you!

  17. Hi Bella darling. I love, love, love you're adorable pumpkin hat. It's absolutely fabulous. One day you'll look back at this great journal your daddy has kept for you and you'll see what I mean. You are just too cute for words. And that sister of yours is totally adorable too. I'm so glad RMH has such fun activities for the families to participate in. That's awesome.
    I'm sorry that the drs haven't figured out your blood pressure issues yet but, you have a super smart daddy and you're so lucky he's on your side. He's figuring things out for you. You are so strong. Much stronger than people who are much older than you. You are definitely teaching so many people from right there in your hospital bed. I know that years from now I'm gonna be reading blog entries explaining the great adventures of Ali and Bella. Stay strong baby girl.

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

  18. Hi Ms. Bella,
    I came across your story on a friend's page and I must say that
    I admire your strength through this entire ordeal you have been through. You truly are an inspiration and when you overcome this battle, you will have the most amazing story to tell. Your support team (mom, dad, big sis) are such strong people and I am happy knowing that you have such wonderful people in your life. Your socks are so cute! I will be praying for your healing and that your family continues to have strength and hope.

  19. Oh Beautiful Bella! You are doing so well! It's so much fun to read of your successes as I sit with my cat on the counter watching her goldfish. I saw your socks and thought of our "one fish" who by the way decided to do a jump out of her bowl today! You should have seen it. I walked into the kitchen and the cat, Toodles, was staring down at it. (She likes chicken, not fish.) I was wondering what she was staring at and it was this 2 inch goldfish on the counter, ONE FISH! Long story short, like you Mr. Fish is a fighter and had a couple difficult hours of laying around on it's side but now it's up and swimming. Gotta tell you sweet girl, the fish is staying in the middle or bottom of the bowl today....happy and swimming. I think the socks today were my favorite so far.

    We are taking our little boy to Disneyland and when I get to the famous wishing well in Snow White's Grotto, I am making the BIGGEST wish for you, Daylon and Jonah. Sweetie pie, when you do your "tour", I hope you get to Disneyland. It's made for princesses like you and Ali!

    I'll be looking forward to coming back and checking your Daddy's blog to see how well you have done!
    Kim in California

  20. PS....Tim and Angelique - Bella will remember the love and devotion of her parents and family/friends. She will grow up knowing how much she is loved. Her spirit and sould knows this and that is why she can fight! She knows that her future is going to be bright and beautiful! How lucky she is to have you!

  21. Dear Bellarina! Harmony would love to borrow your new pumpkin hat someday and mostly because she actually answers to the name "pumpkin" when we call her that! Harmony and I really want you to know how courageous we think you are for dealing with all that you are dealing with and we also want you to know that we think you have the most amazing parents in the world! Oh yea, and the best big sister on the planet! We really hope to meet you someday soon and that you will be well enough to travel back to California. Harmony likes to give her mommy a sweet little smile every time she toots! So don't be afraid to let it rip! Keep on truckin girl. WE love you!

  22. Dear sweet Bella-

    I LOVE your pumpkin hat! You look very festive! Am praying that the newest medicine will help level things out for you, and that you will be healed quickly! I look forward to reading about your progress every day, and praise God for how far you have made it to this point.

    My 6-year old, Jackson, asked how you were tonight, and said he would pray for you too. There are lots of little people at our house (5, to be exact!) who are on your team and praying for you!

    I hope you will rest well this evening and that your mom and dad and sweet sister will, too!

    Love and prayers from TX!
    Laura (for Team A)

  23. Hi Bella, you are so cute in your new hat and I also think you look a little better every day. Keep on fighting little girl. I hope that new drug does the trick once and for all. Love you, baby girl. Praying...

  24. Hi Bella love,
    The day is just beginning here and as usual the first thing I did was put on the computer to see how you're doing. That is one cool hat you've got there, it will keep you cosy in the colder weather. Just imagine how it's going to feel when you can get up in the morning and go out into the world and look round and see the sky, and the birds, and colours and people and feel the sun on your sweet face and smell the wind and the trees and know that you are better?
    One day it will come, it will. I am sending you lots of positive energy over the ocean!
    Tim, you and Ang are doing an amazing job there, I know myself it's just so hard to let yourself hope for a loved one when the whole situation is outwith your control, and switching on and off like you have to needs so much strength. Just look at the world outside and tank up, the world is a beautiful place and you can see the beauty even better when you have been inside in the dark. Look at the sky every day and keep strong.
    Bella, it's nightime where you are, sleep tight!
    Li MH, Switzerland

  25. Hello sweet Bella. May I first say that you have the most amazing mommy, daddy and sister? Their devotion and love for you and each other is astounding. You are such a brave, beautiful girl. Keep fighting the good fight and know there are thousands of people who are pulling for you and can't wait to see you go home to live a typical, EB-free life.

    Love from NC,
    Anna Marie

  26. Hi Bella, you're pumpkin hat reminds me that it's time to go buy some pumpkins to decorate for Halloween. Today, in Denver (and for the last couple weeks) we have been having beautiful fall weather. All the trees are yellowing up nicely. I love when the wind blows and the leaves shower down on me and swirl around and around on the ground. I have two dogs named Toby and Willy and they love being outdoors and running around in the leaves. When they come in from a walk, their hairy little bodies bring the leaves into the house....it gets pretty messy sometimes, but that's OK.
    Stay strong, Bella. We are all praying so hard for you to get better!! I think of you so many times during the day...it always make me feel good! Be well little pumpkin!

    Sending lots of love,

  27. Hi Bella! It is a lovely fall day here today. The air is crisp but not cold and the breeze is blowing the leaves on the trees which are just about starting to turn colors. I have never experienced fall in Germany before so it will be a first for me and a first fall for you too, in a new place. I hope you have a window that looks out so you can see the change in the seasons. I love your pumpkin hat! I have had a little more time lately to knit and crochet again so I am thinking about making my daughter Anna a cute hat like that too. I will be praying extra hard for you and Daylon today. I hope the new drug will help you to lose all of that extra fluid you have been retaining. Lots of love and butterfly kisses, Laura Valetutto

  28. Sweet Bella,
    hope the new drug works. Don't give up.
    Martina, UK

  29. Hi Bella
    A pumpkin hat. My grandson wants to be a pumpkin for halloween but tells me he needs "pumpkin shoes" Since you seem to have such fashion sense could you tell me exactly what "pumpkin shoes" look like? You are brave and strong and when you don't feel brave and strong your dad and mom and sister will fill in for you. We are waiting for you to smile for us and get better. A world full of prayers and love are out here holding you every minute of every day.

  30. In the Barreiro (Portugal) I pray for Bella. Our Lady of Fatima to bless this goes for your complete healing. Lots of power and positive energy from here across the ocean. Kisses and hugs from Paula Anselmo.

  31. Hi Bella,

    I read the blog your Dad writes about you every day. I have no logical connection to you, I'm not a parent, I don't know you. I live thousands of miles away over an ocean in the land of real football that your Dad enjoys so much. But every day I read, and I hope that you will improve, that something will have gone well, that you will have managed some enjoyment out of the day despite all the drugs and procedures and everything.

  32. Bella, I'm praying for you here in beautiful PA!

  33. Hi sweet Bella, I hope you are having a great day. You just get prettier, I'm loving that pumpkin hat.

    It's starting to feel like fall here in Southern Florida, and the kids are getting excited about Halloween. My daughter and son are getting dressed up as Jessie and Woody from Toy Story. I wonder what you will be next year for Halloween?

    I hope you know that you have a lot of people praying for you around the world. I find myself thinking about you throughout the day, wondering how you and your dad are doing.

    Here's to a fantastic day!

    ~ Pati :) - South Florida

  34. Dear sweet Bella,

    You look gorgeous in your pumpkin hat. This road you are in has been quite bumpy and full of shortcuts that seem to be leading to nowhere. But Sweetie, be sure that soon you will find the right direction towards the arms of your Mum, Dad and Big sister. Very soon you will wake up, just as a Sleeping Beauty, without remember a thing, and embrace your life with that spirit and energy that characterizes you.

    Continuing our prayers for you and your wonderful family,
    Carla, from Portugal.

  35. Bella,
    What are you dreaming about as you sleep? The last few days have been full of strange dreams for me. Maybe it is the cool air from the open window and the warm blankets I cuddle under. It's such a nice change from the heat we had the last 6 months. Last night I dreamed about flying in a large airplane that had tons of windows so I could watch the trees below. The best part was that the airplane was completely silent so there was no noise. I do miss all the insects that chirp in the summer nights, but the quiet fall mornings are wonderful for dreaming too. Sweet dreams.

  36. Hi Bella, Tim, Angelique, & Ali - The first thing I do EVERY DAY is to read about you. I think about you a lot, and can't wait to read about Bella leaving the hospital. You're moving toward that time every day, some days more than others. I hope you know what a completely AMAZING family you are. You bring strength, hope, & compassion to all that read about you here. I have a 13 year old son with Asperger's syndrome, and we are going through a very exasperating time right now. But reading about you puts that all in perspective, and helps me remember how very, very fortunate we are. I never say we're lucky, because to me that means that God has not played a part in our journey, and that is truly not the case. God is guiding us through this journey, although some days I feel Him more than others!

    Anyway - Bella, you will soon be done with this being in the hospital business and before you go back home I hope you have the opportunity to see some things in Minnesota that you don't get to experience back home. It is likely we will see it snow this month (well, more likely for me here in northern Minnesota!) It won't stay on the ground for a while yet (I hope). But maybe about the time you get to leave the hospital, we will have some snow on the ground and you can see how pretty the trees look after a snow storm and watch Ali play in the snow. I know you are anxious to go back home. That time will come. All who read about you are praying so hard for you.

    Barb, in northern Minnesota

  37. Love your new hat. It really fits in with the changing season. Thinking and praying for you here in Nebraska.
    The Cooley family

  38. ok - i just typed a long encouraging post and the whole thing got lost :(

    I'll summerize - 1. Bella looks GREAT! 2. Yea for Dr. D.... 3. Praying, praying, praying!

    Sorry - the other one was better!

    RDEB 36

  39. Cutest little carrot top in Minnesota!

    Tim, you are an inspiration for all parents with similar situations your poise and determination to help your daughter are evident in your posts and in how Bella is doing.

    Bella - keep flying little one we're all cheering for you!

    Love Tamar in Boston

  40. Awesome pumpkin hat Miss Bella! I kind of miss the days when my two girls were so young and I could put them in really sweet and cute clothes! My girls grandma used to love to sew and when my girls were tiny she made them all kinds of fun outfits. One Christmas we had the funniest reindeer jumpers!

    Here in NJ it has been rainy and cold. My girls are much bigger than you and Ali. They are 13 and 12 - teen & tween years. They make life very interesting, some days are fun and crazy and other days are very moody. Rebecca plays field hockey, does dance, girl scouts and band. Olivia loves animals, does dance and sings in the chorus. It is always busy at our house!

    Miss Bella I am praying for you nonstop and I know that slow and steady will win this race. Maybe give daddy, mommy & Ali a little peek at your eye today!

    Nonstop prayers from NJ

  41. Don't you make the cutest little pumpkin bella!!how are you feeling? today you get some new medicine that we are all hoping will get you back up and at em...you know what that means? It means you can watch mickey mouse clubhouse, and when you go back home you can visit mickey in person! It means you can knock down all of alis towers for her. I will be praying really really hard that this makes your boo boo s go away so you can play again. Welcome the healing energy in, you will be better soon...just keep fighting babe, brighter days are near. I love you cutie bella pumpkin head! Lol
    Angela O

  42. Sweet Bella -
    There are so many people lifting you up in prayer and hoping and working towards your complete healing. I think of you often and pray that every day is a step forward in your recovery - you are a beautiful girl with a beautiful family.
    Lifting up all of you and praying for your safety, provision, comfort, restoration and peace as you heal through this ordeal.

    Lauren in Spring, TX

  43. Hi Bella!

    At first glance, I thought you had some kind of Bob the Builder look going on with that hat - then I saw the cute little "stem" on the top. What a super gift!

    Your mommmy's boss is coming from Connecticut to visit me in Ohio today. It's a rare treat to actually see her, and I'm still not entirely clear why she's coming. Someday soon, I hope to meet your mommy "in person" too. Of course, you need to get better before I'd feel okay about your mommy leaving you to visit me.

    There's such a big world outside your butterfly-covered room, and I pray every day for you to gain the strength and ability to go out into it soon and run around and explore it with your sister.

    Angela Ulrich
    Dublin, Ohio

  44. Hi Bella

    You always have the cutest accessories. I hope your hat designer is working on a new one for the winter time! A snowman would be cute. I zoomed in to see the label of your socks and went to the website. I think every new baby needs those flip flop socks with the butterfly. I wonder if they have increased sales because of you! The company needs to name a pair of socks after you :)

    Rylee continues to update her class on how you are doing. Everyone was really happy to hear your medicine worked. I saw the butterflies we sent on your wall. I am glad they made it!

    Tonight we are going to BOO our neighbors. You and Ali will have to do that to your buddies at RMH and 5D. We have a Halloween bucket with slipper socks, candy, fall colored nail polish (the girls are getting older), a pumpkin night light, and Halloween themed silly bands. When it just is getting dark, we are going to leave the goodies at our neighbor’s door and run away so they don't know it is us! Then it will be there turn to boo someone else on our street. There will be a sign on their door that says I've been Boo-ed so you know who has been done. It is just a fun Halloween tradition we do each year.

    Bella I hope you have a less roller coaster type of day. Maybe go for a less stressful ride like the Tea cups with no spinning!

    Much love to you from Louisville, KY.


  45. Continuing to lift all of you up in prayer. Expecting that miracle God desires to do in Bella and your entire family!!!

    Michelle in LCMO

  46. actually I am from KCMO lol fat finger syndrome

  47. Good morning Bella,

    My daughter and I read about you every morning. Alyssa, who is 2, says, "Baby sleeping" every time she sees you. We are both looking forward to the day when you show us your big smile again.

    This morning when we saw the picture of you in pretty new hat, Alyssa said, "Look Mommy! Bella has the same hat as 'Lyssa! I wear my hat today, ok?" So today, Bella, you and Alyssa are twins.

    Love and prayers from Virginia,
    Meredith (and Alyssa)

  48. Bella,
    Love the hat and the socks! Dr. Seuss can make anyone feel better. I know you are building up strength so you can dance with Ali and laugh at Dad's funny dance moves.


  49. Bella,
    You remind me so much of my own little girl, Caroline, who has EB - just like you (just a different type). When she was born, she lived in a room a lot like the one you've been in for 133 days. During that time, many people doubted her future, but she has the same spirit and strong will that you do! Today, she attends Kindergarten, rides a trike, loves to read, and has an amazing memory. She is also beautiful, with a sparkle in her blue eyes. Your eyes have understandably been closed a lot lately, but I've seen pictures of your fiery eyes... that spirit/spunk/hutzpah - whatever you want to call it - will see you through these hard times. And they will see your family through them, too. You know, don't you, how hard your family works for you? Because they love you SOOOO much! And who wouldn't? You are an AMAZING little girl, and we think you're all pretty special!

    Now, you have 2 jobs right now. 1) Get that blood pressure up and get breathing on your own. Those are the first steps to getting you out of that hospital bed!! You are SO strong and you CAN do it!! 2) Every once in a while, give your mom and dad and Ali a little squeeze on the finger or long look in the eyes. It'll make your first job easier!

    We LOVE you and are praying for you. As I go for my morning runs, I say your name in cadence with my feet ("Bella go. Bella go.") Peace be with you and your wonderful family!

    Hugs from Caroline and all of us,
    The Provost Family, Palatine, IL

  50. Bella you look so absolutely adorable with your pumpkin hat.. I LOVE IT! I'll be saying prayers for you today while I work..!! Love to you!

  51. Hi Bella!
    I LOVE the pumpkin hat. You look so adorable in it. I have been thinking you're coloring is looking better and better and somehow more relaxed. Like maybe you are more just hanging out resting and waiting and healing now than almost hiding from the huge amount of stuff happening around you and to you. I think you must love having your daddy read to you so much! and that has made a big difference.

    I love to look at your pictures and those of your beautiful family. I laughed at the comment about Tim and Alli dancing. I will have a good day today thinking positive thoughts about you Bella. And that means a lot to me because I sometimes over worry everything or struggle with depression. You all have helped me with that.

    Love from Arkansas, Susan

  52. Bella Bella Belissimo

    Greetings from the sweetest place on earth! You are a doll, just adorable and I hope your parents will give you lots of hugs and chocolate kisses from us. You are such a wonderful girl and we cant wait to see you up and dancing with your sister. Lots of warm thoughts,prayers(and we are not religious but will pray for you) and wonderful karma on the way to your from Hershey PA

  53. Good Morning Bella! Your pumpkin hat is adorable and definitely fitting for upcoming Halloween! Keep fighting and I hope and pray that your new medicine this morning works!

    As I read last night's post about Dr. D coming around, I couldn't help but think to myself - that's the "Power of Bella!" How could Dr. D not jump on board? Bella's spirit and fight is truly amazing and who couldn't be wrapped up in her and do all they can to help her in her fight!?

    The dancing pictures are great! Ali is so happy and such a good big sister!

    Praying for you in Kansas!
    Darci Spear and Jack (16 months)

  54. Hello dear Bella,

    I've missed posting over the last few days because I traveled to Northern Virginia to be a bridesmaid for a dear friend of mine (though I did keep up with your posts on my husband's phone.)

    I thought about you a lot when I was up there. All the beauty of the countryside -- the rolling hills, the canopy of trees shading the gravel roads, the soft sound of Goose Creek -- made me think about you. One day soon, you and Ali will be chasing butterflies in the hills. One day soon, you, Ali, Mommy and Daddy will take a drive with all the windows open on a winding back road. One day you and Ali will splash and play in a creek.

    As I watched my friend walk down the aisle, I again thought of you. One day (when you're much bigger), your Daddy will walk you down the aisle to join your great love. What a beautiful day that will be (maybe under your dress you could wear a pair of your fabulous socks). Team Bella will rejoice on that day as we do every day you continue to fight (and win) now in the hospital.

    The officiant of the wedding is a well-known author. She writes a lot about angels (I'll send a copy of one of her books to your Daddy so he can read some of it to you). She spoke of the angels that are everywhere and that they hold us up when we need them. She also spoke of the miraculous power of love. That in love and community and God everything is possible.

    While your body is healing, run and play and laugh with your angels -- angels make great company. I know they love listening to the wonderful stories your Daddy is reading to you. They love seeing your Daddy's funny shirts, hats and silly faces -- angels have a great sense of humor. You are kept warm and safe and loved in their arms until you are well. God has sent His most special angels to help you win this fight. I am so proud of your strength and fire. You are mighty, dear one!

    Sending lots of prayers your way.

    Love and hugs,
    Kelly in Tampa, FL

  55. Hey, sweet Bella!

    I missed commenting yesterday, and I am so sorry! I always feel like I need to just check in with you guys...kind of like calling family to see how things are going. I suppose I can be Bella's somewhat "loca" auntie who lives in NC. How's that? I have a niece who calls me "Tía Gato" - a nice combination reference to my Spanish teaching and my kitty rescue work. So please give Bella some love from her Tía Gato...don't forget!!

    And I must say that is about the cutest little pumpkin head I've ever seen. What a lovely and thoughtful gift. Again, more beauty coming from this garden you have planted, Ringgold family.

    As for the dance moves - My motto is "Go big or Go home". Way to rock it out, Dad! You're the type of parent that all kids love. Ali had to get her zip and zest from somebody!

    Wishing you all a great day. It's wonderfully cool here in NC this morning - so very refreshing. I hope you find something to refresh your spirit today.

    With affection and praying for healing,

    A friend in NC

  56. Hi Bella. I hope that when your dad reads my message to you he puts his best Spanish accent since I'm from Argentina (Tim, try Gloria's accent from Modern Family; not that I look like her!). You will have so much fun when you are older and see all those beautiful pictures your dad share with us. How many butterlies do you have in your room by now? I'm sure that a lot!
    I read the bolog first thing in the morning while we have breakfast so that everybody is thinking of you since very early. Martin and Victoria love your new hat.
    Always praying for healing, patience,and strength.
    Love all the comments!

  57. Hi there Bella, it's night time this side of the world and I am on my way to work, but I had to just say I love that hat :) we don't do halloween here, but I love seeing how you guys dress up :)
    Bella, sweet heart, you have some smart, strong, awesome parents and I hope that this new medicine work, look forward to checking in on you in the morning
    Jess, S.A

  58. Hi, Bella!
    What a cute little pumpkin you are! You are such a special little girl. I found your blog several months ago via Jonah. I already spend too much time online, so I didn't think I would follow your story, but then I noticed something that I could not ignore. You were born on the exact same day as my little girl! Since then I have felt a strong connection to you and I have been praying for you constantly. Thank you, Bella--you have helped me to be a better mommy.
    Now, you are only 8 months away from your 2nd birthday! You better get well and be ready to party because I think LOTS of people all over the world will want to celebrate with you. Fight hard!
    Love, Sarah in Tennessee

  59. Good morning Bella Boo!! I hope you rested well last night and are ready for this new drug. I pray that it is the answer to help you through to the next stage of your journey. We miss you and can't wait for you and the fam to come home! We have so much playing to catch up on.. and yummy dinners and wine for us adults! Tim, we have missed our dinners with you guys, those are wonderful memories we hold close to our hearts :)
    To catch you up on a few things happening here, Everlee is sitting up with out us holding her up, so that is exciting, hopefully she will start crawling soon. Meredith checked into the hospital this morning to be induced! Her daughter Teagan will be yet another fun gal for you to play with! My mom, sisters, Grant, Everlee, and I are excited to be walking in your honor on 17th! We feel priviledged to do this for you and we will be sending you a pic of all of us in our shirts so that you can have it in your room!
    Continued love and prayers are being sent your way EVERYDAY! Lots of kisses to you and Ali!
    Love always,
    The Vanderbooms

  60. Little Bella,
    You go girl, have a great day!
    Open your eyes, move a pinkie or two!
    You go girl, we're praying for you!

  61. Bella,

    I was on my way home from work and the care in front of me had an Alabama license plate that said Cur EB! I was so excited! I wanted to follow them to wherever they were going but had to get home to my little girl so I resisted that urge. Praying that the new medicine works!


  62. My pastor once told me that: "God may give us more than we can handle, but He will never give us more than HE can handle". And I truly believe that. Just as we are about to go under, God steps in and takes over. (My pastor also told us us to give all our crap to the Lord, but that doesn't sound as good.)

    You are an amazingly strong family and God watches over you, walks with you in every step, every process that you have to go through.


  63. Lynne, Bob, Jack and BenOctober 6, 2010 at 9:56 AM

    Bells -- I can't say enough about the hat. You are fabulous, even in ICU, pumpkin. Jack would like you to know that he is going to be a man- eating shark for Halloween, while Ben will be one the little green aliens from Toy Story. He has been walking around saying "The Claaawww."

    The boys include you in their prayers each night, and are perfecting butterflies to send. Please know that when your daddy is holding your hand, it's like we are all holding you. Know that you are wrapped up in love from all over the world. Know that one day, you will say "yeah I was born with this horrible skin disorder, but when they took me home from the hospital, it went away."

    Love you.

  64. Hello Bella

    I hope this note finds you sleeping comfortably with great pressures :)
    Tripp, one of your EB friends, is not doing so hot these days either. I lift both Tripp and yourself up in prayer every night. I ask the Lord to please ease any pain you may be feeling and fill your bodies with strength and healing. You are a beautiful girl with a beautiful family. As said above, every little girl (and boy) needs a daddy like yours. Please continue to fight!! Until next time, God Bless

    Bonnie from Louisiana

  65. Hello Sweet little Bella- You look so beautiful today!! I understand it wasn't the best day, but that's ok sometimes. I pray that today will be a great day for you. I pray for your strength and tolerance today! I pray for your family and that they continue to have strength and courage for the day. To be renewed each day, to help you fight the good fight everyday. You are a precious gift from good and he has a remarkable plan for your life! I pray for your Doctors and caretakers to have the wisdom needed to help to continue to heal! I know that you will leave this hospital saying that you had this rare skin disorder and know you don't!! God Bless you and your family and please know that my family lifts you in prayer daily!!! Love the Larsons, Patti, Erik, Brittany, Cameron and Savannah

  66. Hi Bella!
    Wow, you sure have a special mommy, daddy and sister. They love you so much! And guess what?!... There are SOOOOO many more people who love you!... People you don't even know and people who have never met you. But we know your story and your strength and the love, faith and courage you have taught us all! My prayer for you today is that you feel it all coming back to you. I pray you feel the love that is coming from all over this world especially for you and your family. I pray you feel God's loving arms and that you feel my two little angels holding your hands, helping through the muck!
    Prayer is a powerful thing. Believe in it. Feel it.
    With love,

  67. Bella:

    I love your new hat! It reminds me of a similar one that we had when my daughter was your age (now 7 years old). It looks great on you and I am so glad to hear somebody made it just for you (even more special).

    Your socks are awesome too. Daddy and Mommy have kept you in fashion the whole time; I am sure Ali has helped on that front too (your sister is quite the cutie too). I love that story, One Fish, Two Fish, Red Fish, Blue Fish. I hope Daddy can find you a copy and read it to you too. It's a cute rhythmic book.

    Your Daddy is very bold and courageous. He is so honest about everything and all of his efforts are to get you back where you belong (at home showing off your beaming new skin). I am waiting anxiously for his next post. I hope the collaborative approach to your care will help with the solution to your pressure situation. I hope the new meds will do their thing and reduce the inflammatin and give you stable pressures once and for all.

    You have taught and you have raised an army of prayer warriors. You have shined. I pray tomorrow's new approach has the answers so you can make steps forward in your journey home.

    Praying for you Bella!

    Go Bella!

    Love from Rachel :)

  68. Hi Bella,

    I've been reading about you for a long time now, but haven't commented before. How special you are to have so many people loving you and praying for you. I really love the way your family loves you. It gladdens my heart.

    My name is Lindsay, I'm twenty-four years old and I'm studying for a Masters in social work. I've got a child protection placement at the moment, which breaks my heart every day, seeing how damaged families can be. So I'm so glad that some families can stick together and grow stronger through difficult times.

    I live in the UK, in Newcastle-upon-Tyne, a northern city, almost as far North as Scotland. People speak very strangely up here (I'm from the South originally, so I had to learn to understand them!) but they are very friendly and they always call me 'pet' or 'flower' when I talk to them, which I like.

    Dear Bella, I have been through some difficult things in my own life, and I truly believe God is our refuge and strength, an ever present help in trouble. And He loves little children - you are so precious to Him, Bella, even more precious than you are to your parents - can you believe that? And God is in control of your life, no matter what happens.

    This year I have been diagnosed with AS (ankylosing spondylitis - a form of arthritis) which means my spine is fusing together. It means that I am often in a lot of pain. It makes me look forward so much to the New Creation, when everything is perfect and beautiful. Can you imagine that, Bella? No more pain! What a wonderful day that will be!

    I am praying for you and your family Bella, that God will strengthen you and them, and that you will not be afraid, because God is holding all of you in His mighty hand.

    Lots of love to you all,

  69. Bella, you looks so cute in your pumpkin hat!! And your cheeks just look so irresitable - I bet your mommy, daddy and big sis kiss them many times a day. I hope you are feeling better today sweetie. You are such a strong girl, I don't think anyone will ever mess with you:) heehee. Praying for a good day for you and also a lighter day for Daddy.Kisses!!!!

  70. Dear Bella -

    I hope you're having a great day! Your pumpkin hat must be keeping your head warm! It's adorable - wait until your dad shows you a picture of you in the hat.

    Speaking of pumpkins and Halloween and everything "October", did you know that they are now making Pumpkin Spice flavored Hershey Kisses? I couldn't believe it when I saw them at Target the other day. I just had to buy a bag to try them. They taste just like pumpkin bars - and if you bite into them, the inside is white - just like the cream cheese frosting that goes on top of pumpkin bars. They are yummy!

    Do you know what Ali going to be for Halloween? My Alli (Allison) is going to be a hip hopper. Since you're only one year old, you probably don't know what hip hop is, but when you're 11 like Allison is, you have definite ideas about what you want to be for Halloween, and this year it's a hip hop girl! Maybe your dad could try some hip hop moves to give you an idea what it is! I think the Moonwalk would be a good one for him to get started on.

    I hope your family is enjoying the incredible weather we've been having in the Twin Cities area. October is the absolute BEST - before you know it it'll be snowing and cold outside.

    Lyla in Hudson, WI

  71. Dearest Bella,

    What a splendid hat! I'm thinking Janet (Jack and Molly's Nana) has skills way beyond my fumbling attempts at knitting. I can do scarves (long and straight with no corners to negotiate) but a fine pumpkin like that? Not a chance.

    I do love the word 'pumpkin'. It has such plump and endearing qualities. That got me thinking - and doing some wondering. Wondering whether 'pumpkin' sounds so good in other languages. So [drumroll] here, for your listening pleasure, Miss B, are the fruits of my labours. What do you think?

    If you're a Portuguese pumpkin, you're an 'abobora'; if you're a French pumpkin, you're a 'citrouille'; and if you're a Dutch pumpkin, you're a 'pompoen'. Oooh, I like the Dutch one.

    Now, how about 'pumpa' (Swedish), 'dynia' (Polish) or 'dovleac' (Romanian)? Your vote please, Miss B. I rather like the Swedish.

    Or what about 'kurbis' (German), 'calabaza' (Spanish) and 'gresskar' (Norwegian).

    Or 'zucca' (Italian). That's a cool word, isn't it?

    Or Croatian - 'bundeva'. Bella with the bundeva bonnet. That's got quite a ring about it, don't you think?

    Shouting out for you today, Bella, from the rooftops, with a large multi-lingual dictionary grasped in my sweaty hand and a big grin for you.

    Fondly (and precariously),


  72. Dear beautiful Bella,
    Please know that everyone is praying so hard for you to get well! I can't start my day without checking to see how you are doing. Did you know that your dad is a riot?? When I see the pictures of you and your family, I realize how strong love can be. Stay strong and keep up the good fight!
    Love from North Carolina

  73. Hello Sweet & Dear Baby Bella;
    You are an angel sent from heaven and a real inspiration to all. You look so cute and adorable in your Pumpkin Hat. You are so blessed to have such wonderful parents and your sister Ali and so many caring people all over the world. You are so Brave, Strong and you are truly loved. Bella you have taught us not to take the little things for granted, everything is important. We need to be more thankful and grateful for each and every day and thing that God gives us. We need to count our blessings and give thanks. Bella you and your family are really enduring to the fullest. Praying the new medicine works. Stay Strong Baby Bella. You are always in our thoughts and prayers and We Love You.
    Lots of Hugs & Kisses for Beautiful Baby Bella.
    Myrna & Dwight CA

  74. Hi Bella,
    I dont think Ive left a comment on your website yet, but I want you to know Ive been there with you since day...44?. My goodness, you are one brave little girl who has already endured so much... but do you know something amazing... you are a girl of talent, one who steals the hearts of many.You know how to make our hearts softer, let those tears roll, remind us how fragile and precious life is.
    I love to read your story, Im amazed how strong and committed your folks are and be able to see pictures of your sweet sister. You have a family who loves you more than you will ever know. Bella, dear one, I want you to know that those many hours, days and weeks that you sleep through things...your family continues to be there for you and beside you. You are a girl who is totally loved.
    I havent met you, but do you know what, Bella... I feel as if Ive known you from the day you were born. Strange, but thats whats so special about you, you have a way of capturing our hearts. We are drawn to you....and we pray for you so much.
    Hang in there little girl. We will continue to pray you through....and trusting God to allow some wonderful things to happen in the days to come. Keep on fighting little one, know those tender loving angels are roaming around in your hospital room, keeping watch over you and your beloved family. God loves you and so do we.

    Ill be checking on you again tomorrow, and maybe again tonight. I just cant miss anything...:)

    Heidi C.

    PS please tell your daddy that he is a talented writer and how much we appreciate his willingness to share you with us. OH, how we wish we could give him a hug and encourage him along. Keep on keeping on, dearest daddy.

  75. Bella,

    I love your Dr. Seuss socks - they are awesome! I wish I had a pair. I read One Fish Two Fish Red Fish Blue Fish to my son, who is 7 months old and he loves it. I've been thinking about you every day but I've been traveling for work this week and haven't been able to check in each day. I know you are working hard to heal, and we are all praying for you!

    You have such a loving family and so many people who are supporting you from afar. Keep up the fight, little girl.

    Kim from NC

  76. Bella...you are totally rockin' that pumpkin hat! But lets face it, you are just too cute for words :)

    You are an inspiration to so many across the world. There is such a little fighter inside you! That inner strength will not only carry you through this battle, but all of life's battles that are yet to come!

    Sweet dreams :)

    Wewahitchka, FL

  77. Lookin cute in your pumpkin hat! We love you! Love, The Edlings

  78. Love the carrot hat! (Ok, ok, PUMPKIN!) :) You are adorable no matter what. Hope those new meds are the ticket to the next level, little one! We are praying for great results for you.

    It is getting cooler here in SC and we are breaking out our jackets. I know your family is bundling up more than us. Why, oh, why did I sign up to load kids onto the hay wagon at the fall festival tomorrow night? Oh, cause they asked when it was WARM! :) That was it!

  79. Dear Bella,
    I wrote you a long comment and then accidentally deleted the whole thing, so I'll try it again.

    It's definitely fall here in Michigan, despite the fact that it was 70 degrees today. I wish I had a cute pumpkin hat like yours, but I think I'd look a little silly wearing it at university.

    You are in my thoughts and prayers every day, and so is your family. Please tell your dad that taking care of somebody with a trach gets easier over time - my job while I'm in school is taking care of people with traches. It can be difficult to adjust to the equipment, but eventually it gets easier. And your dad has the very most important requirement - love. If you've got that, nothing else really matters. It can all be learned.

    Every evening when I get home I look forward to reading "your" blog and seeing what you've been up to. I am honored to be part of the team storming heaven's gates for you. After I read the day's entry I pray for you. And, starting today, I post something for you to hear. You are such a fighter and you are so strong.

    Now I have to get back to homework - reading "Atlas Shrugged." I think it's a rite of passage that college students have to read overwhelmingly long and boring books. Someday I'm sure you'll be complaining about something just as awful. :)

    Your friend,

  80. Dear Bella -

    YOU CAN DO IT!! Even though sometimes its two steps forward and one step back, you are a true fighter!

    Much love,


  81. Bella-
    Was crazy busy at work last night taking care of a baby that weighs exactly 1 lb!! - and was too tired this morning to leave a comment. I hope that you had a good day today and that the new med works its magic. I picked up an extra shift tomorrow (days... what I was thinking???!!!) so I'm off to bed before your Daddy tells us about your day.


  82. Bella, Love your new pumpkin hat! I had to write to tell you how nice your skin looks these days. Still pulling for you and praying for you in Colorado, Jen

  83. Dearest Bella,

    I was watching tv tonight and feeling sorry for myself.. I've written your parents a bit about my woes, but they are trivial and small compared to yours. I want a baby of my own, I want to live near my husband's family (whom I love like my own), I want to be on the west coast, and I want a job where I feel respected and valued. I want all of that, and I don't have it, so I was watching tv (Glee, the music is distracting and it's silly, which makes me smile) and feeling sorry for myself and then all of a sudden, I thought, "I miss Bella! I'm going to check in on her right now." I have no idea why I though of you.. or why sitting here writing to you with tears pouring down my face will make me feel better.. maybe it won't.. but I thought I'd share all the same. You are an inspiration and light. You and that remarkable Daddy of yours.. I'm starting to love all of you. You inspire so many people because of your strength and your determination to never, ever give up. We are all out here, cheering for you, rooting for you and knowing that you're a miracle child. Stay strong baby girl. You look beautiful in the pumpkin hat. I'm lucky enough to have friends who make home made knitted items for me, too! Aren't they special? I hope it's love and warmth help heal you. Oh, and awesome socks!! They remind me of a bumper sticker I had on my car in college. Dr Suess is the best =). Until tomorrow's check in.. be well baby Bella.
    lots of love,
    Ft Lauderdale, FL

  84. Bella,

    Great Hat and Socks!

    It is hard for me to write my thoughts, but the things that everyone else writes I am thinking for you! (If that even makes sense)

    As always PRAYING for you and your family!

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

    Becky (Texas)

  85. Hello Miss Bella!

    Love, love LOVE the new punkin hat!! Now it finally feels like fall. :) You rest well, and show those docs more of that beautiful, spunky spirit of yours! Really happy to hear that Dr "formerly known as Doom" (Tim, should we give him a symbol now??) has fully jumped aboard this ship. How could he not, after feeling all of the love and healing energy surrounding you from each of the many, many wonderful people who are sending their very best to you. I still begin and end my day with you Miss Bee...stay strong honey! As always, blessings to everyone, but especially to you Miss Bella, beautiful baby girl, because I see what I believe, and you have already been healed!