Sunday, October 10, 2010

October 10: Day +100



Heaveno!

Happy Day +100!

Well, we're obviously not where we thought we'd be today, but that's okay. In so many ways, this journey has provided so much more to so many more than if Bella had chosen to be born EB free. So, the fact that we're in the ICU on day +100 instead of on our way home is really no different than when we came home from the hospital without our baby over a year ago. She remained in the NICU for another week or so.

So, Bella's entire life has been one giant opportunity for us to practice letting go of what "Should be," and instead embrace, "What is." What a gift she is to teach us this.


Check out the next installment of "Bella's Fabulous HAT of the Week!"

Someone had mentioned doing something special and celebrating day +100. Well, Bella decided to celebrate. They D/C'd her precedex today, and BOY did that make a difference. Bella was more awake and alert today than I've seen yet. We are still weaning sedation every 24 hours. Today, the precedex was turned off, and no sooner was the precedex turned off than Bella's blood pressure JUMPED up to 110 over 80! It stayed there all morning, despite us discontinuing her phenylephrine and dropping her vasopressin to .0009! We also pulled off all 150 mL of fluid they pumped into her overnight, and she'll still end up around -70 for the day! Oh, and we started pressure support trials again on the vent.

How 'bout them apples?


Sitting up again today... check out the Halloween socks!

My favorite part was watching the completely blank stare on the attending BMT doc's face when he walked in while she was rocking so well today. You could just SEE how baffled he already is by Bella. Another new doc = another baffled doc. None of us here are baffled by now of course, because we've been following and rooting for Bella the whole time. We KNOW what she is capable of, and we know what God and the Universe are capable of.


Pioneer Hall courtyard, a fitting name for our experience here...
We did some dressing changes today... arms, lines, ulcer, and trach. Then, it was time to head off to Collin's 4th birthday party! Remember, Collin is 'one of Ali's Minnesota boyfriends,' as she describes him. We have really grown to love his family and I think the feeling is mutual. Deb and Spence, Collin's parents, are just such good people, and have really welcomed us into their circle of family and friends, much like Logan and Erin, Jay and Lonni, and Brent and Dayna have. We feel really so blessed to have such a strong 'extended family' on the ground here to help us get away when we need to recharge.


The birthday boy stepping up and takin' a rip...


Look at that form!


Check out Ali and Aubrey's butterfly shirts!


Spence taking his turn as the horse for Ali...

I'll say this, sleep may equal recharge for my body, but sleep does not totally equal recharge for my BRAIN. I NEED to change my physical latitude and concentrate on something completely different than Bella (my love, but primary stressor) in order to give my brain a break. Working helps Angelique accomplish this, and Ali goes to pre-school. I need to go to people's houses, go for drives in the country, get outdoors and connect with nature. Those are the things that I need to do on the weekend in order for me to mentally endure five 12-hour days in a row for the past 15 weeks or so.

What do you do to recharge?

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."

God night.

This is a cute sequence of me and Aubrey playing together...




46 comments:

  1. More good news. Hitting refresh on the iPad also will not cause damage.
    Go, Bella. Baffle them...amaze us all! Love that picture, are you whistling? ;)
    I was in a funk this weekend, feeling like I wanted to do nothing. I watched a lot of bad tv ( Swamp People, anyone?).
    After church today (and boy, did I get attacked with inquiries about YOU, miss Bella!), we headed to Disneyland. As hot and crowded as it was, it's a refresher. Enjoyed my kids, enjoyed the time together. Molly rode the Matterhorn today! That's crazy, she's not een 3 yet!
    Next time I'm at Disneyland, I will be with 18 other people who love you. 19 people and almost $3,000. To honor you. Can't think of anything more refreshing!
    Love from home!

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  2. I'm loving the halloween socks Bella! :) Glad today was good. You are doing it girl. You are on your way. We are all here when you are ready!!! Praying for complete healing!
    Lots of love, Michelle
    Houston

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  3. Keep baffling them BELLA! Love it!
    Cathryn (Colorado)

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  4. Bella, what an amazing girl you are! Keep up your good work, we are all here rooting for you!

    I like to recharge by singing loudly while driving in the car with the windows rolled down, taking a long, hot shower, reading a good novel, going for a hike in this gorgeous desert, and sitting down to good eats with friends and family (and maybe a glass of red wine!). A night out dancing with the girls is always a good way to relieve stress as well, but I don't get to do that as much now that I'm a mama. ;) So now I snuggle and read books with my little boy instead! Pretty good trade, I think. :)

    Hope tomorrow is another good day, Miss Bella!

    Best,
    Cara in Tucson

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  5. Bella,
    Love the hat and socks! You are so cute!
    Praying for you and your family!

    Becky (Texas)

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  6. Bella - how I LOVE going to bed with good news about your day!!! :) Keep the good days coming!!

    How do I recharge? I take a workout class called CrossFit ... it's really out of the box... we roll tractor tires around buildings, run with sandbags, and crawl like bears and crabs for miles. I leave my frustration (and sweat) behind!!

    We are all anxious to see your parents recharge by listening to your giggles and delighting in your smiles, precious girl!!

    Keep 'em on their toes, Bella!!!

    xoxoxo
    Denise

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  7. Sweet Bella! I am soooo happy that you had another great day! I love your new hat and Halloween socks!!! You look great sweetheart! Keep up the good work! Continue to baffle your doctors! I am so proud of you! You truly are the strongest person that I know! I hope you have another good day tomorrow! I cant wait to hear!! Sleep with Angels sweet Bella =0)

    All my love,
    Sarah in Colorado

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  8. I love them apples! My husband is going to roll his eyes if I tell him I stayed up til almost midnight for Bellas update. He is one of the people in my life that doesnt understand the connection I feel with Bella. He doesnt see the hope, the love, the faith, the belief. Thats ok...he doesnt need to understand. I do. He sees that I cry for her...my heart aches for her. But that is part of this ride that I "signed" up a long time ago. Over a hundred days I believe. But there is no way I would stop reading now because a few people dont get it. There are hundreds of others of people that do. :)

    Bella- I wanted to tell you about my nephew tonight. You see ten years ago my brother and sister in law were accused of child abuse. But what the drs that accused them were not aware of was he had a disease that causes his bones to break very easily. It is called osteogenisis imperfecta (hope I spelled that right). It is much easier to just say brittle bone disease. :) The doctors didnt think that he would run or even walk without a walker. Justin started getting treatments at the Mayo Clinic about seven years ago. I believe they were kind of experimental at one point but these treatments work. He walks with out a walker. Last year I saw him run for the first time. I just stared at him and I said to his mom "he is running". It was amazing. See there always is hope and doctors dont always know the future. Sending you hugs and kisses and bunches of love. Can you feel the love? Wrap yourself in it and feel the warmth. xoxox

    Denise WI

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  9. Yeah Bella!! So glad you're having a fabulous day! You just keep showing them who's in charge :)

    May I suggest some mindless video games?!?! That's become my favorite downtime activity. Mario's always been my favorite, so I was pretty stoked when I realized that they had Super Mario Bros DS. It's the little things really. lol Of course, I do have to remember to share with my 4 kids, and "let go" when the 5 year old uses 1/2 my lives & then saves it. UGH!!! just kidding, kinda. Anyhow, great mindless activity. My other favorite downtime activity is scrapbooking. Sadly I'm about 10 years behind. Some day, I'll get some "free" time to get it all in order. Until then, I'll just keep on taking pics to someday be used.
    Great job Bella! Tomorrow will be even better than today!
    Prayers, hugs & wishes sent to you Miss Bella & to your mama, daddy, & sister.
    Brenda (Kansas)

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  10. Bella-
    Keep on fighting Bella and keep on baffling those doctors!
    We were gone for a few days and I couldnt wait to see how you are doing. What a roller coaster you have been on, but you are such an inspiration to so many.
    I wanted to tell you what we saw at the Monterey Bay Aquarium this weekend- an entire exhibit of seahorses. They are so delicate and beautiful and so different from the other creatures of the sea. You know who they made me think of? Your daddy. Sea horses daddies are the best there are- they carry their babies and give birth to them and protect them. Kind of like your daddy is carrying you through your hospital stay. He is your protector and defender. I pray that someday soon he will be carrying you out of the hospital and that one day he (and your mom)can take you to see the sea horses at the Monterey Bay Aquarium!

    -Jennifer in Davis, CA

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  11. Way to go bella!! I do have to say this though-- the drs are not the bad guys here, Like all of us they do the best they can wjth what they have and are learning every day.I am a medical professional and we ache when things dont go the way we want them to and our patients take longer to recover,but we hang in there for that 'miracle" that every once in a while happens.Along with my prayers for Bella.Daylon,elle and families I hold the medical staff up to our Lord.I pray that he showers his many blessings on all of us.With Him nothing is impossible. My destresso??I sew and think of little Bella working away. Bless you sweet baby

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  12. Jack and Molly's NanaOctober 10, 2010 at 10:28 PM

    Bella, Bella, Bella...you're really something, kiddo. I'm so glad you're feeling strong enough to be more awake and alert; you've missed WAAAY too many Clubhouses (also one of Molly's favorites)! I love your piggie hat; my next project is to look for a turkey hat pattern for your Thanksgiving "look". Oh, and what do I do to relieve stress? I knit and crochet, of course - hats of all varieties for chemo patients. I'm one of those people who can't "just" watch TV; my hands have to be busy, too. It's calming and quiet and relaxing...aah.
    Have another great day tomorrow; can't wait to read about the progress for day 101. Go, Bella!

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  13. Dear sweet Bella,

    I'm so glad you were more alert today! Before long you'll be laughing and telling all those docs who didn't believe in you "I told you so!" I LOVE your piggie hat - you have some very talented friends! Looks like your big sis had a very fun day today - glad she was able to get out and enjoy a beautiful one!

    Your dad wanted to know how we "recharge." Well, around here, those moments are kind of rare. Team Anderson is made up of 5 kids ranging in age from 10 to 3, so we (my husband and I) seem to be in full-on "go" mode most of the time! (By the way, our 5 Little As ask about you and pray for you often!!) Anyway, I'm NOT complaining - but it's definitely busy. Reading and working out are helpful, and also just taking time to be still and pray!

    Anyway, enough about me - please know that the Team in TX loves you and we're praying for you to continue to get better!!

    Laura

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  14. Wooo hooo!!!! Go Bella! You certainly did rock it today. Awe-some! What an excellent 100th day on 10/10/10.

    Recharge? I like to sit at my piano and just play. I play for me.... it comes from a very selfish place, but I always feel better afterwards.

    Loving the hats and the socks. Keeping it classy and sassy Bella!
    Much love,
    LaurenBev
    Gilroy, CA

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  15. YOU ROCK BELLA! I'm so proud of you and all that you have accomplished so far. You are AMAZING!

    Tim,
    I love the pictures from the party. Looks like everyone had a blast. I agree that you need to get away every now and then to get your mental energy back. I'm a stay at home mom and sometimes I feel like I'm gonna go crazy so I will go and a pedicure(rare, but very fun) or even just going grocery shopping by myself can be so relaxing. I'm glad you have found ways to recharge. At least MN has great scenery.

    Oh and Bella, I absolutely love your new piggy hat. It's awesome. And my daughter Malorie has those same Halloween socks. You have good taste. :0)

    Stay Strong.

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

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  16. Dear Bella, I just Found you a few days ago and since then I think about you a Lot! You touch People around the World: me for example, a German mom to Three Kids and a Little Baby Girl who is going to Be born and going to die in January... Right now I am spending my holidays in Crete/Grece, which is a Beautiful Place you have to visit once!
    So Keep going on Little girl, we include you in our prayers over here!
    Iko

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  17. Oh such a great +100 day!!!!!!! So happy to hear the good news!! Tim....Bella looks less puffy to me today....is this true? I Love the socks and hat!
    WTG Bellababy!!!

    So the other day I shared a little of my story with you but I didn't tell you that I have been a nurse for 25 years! I know medical professionals are "not the bad guys here" BUT I also know that A LOT of them have HORRIBLE bedside manner....while Dr Doom has great ideas he did not have good bedside manners....people need to also remember one VERY important thing....as medical people we MUST also nourish the souls of our patients AND families. That is almost as important as the medicine we give, the care we provide,because you see....if you break their soul nothing else you do will matter and the hope will be gone.

    Bella I know you have heard some tough things baby and that your to little to understand what is being said but I firmly believe you understand the tones of the voices you hear. Do not let it get to you honey they are not god and you are one strong little girl. Keep up the fight Bella....slow and steady wins the war!

    love from your friend.
    Marsha in Belvidere, IL.

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  18. Good news ... I'm so happy to hear... that your +100 day was so great.

    Keep the fight sweet Bella... I now that tomorrow is another good day.

    With love and all my prayers
    Sandra from Portugal

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  19. Dear Bella,
    I'm glad you had a nice weekend and your family too. I enjoyed your pictures as much as the ones of your family having fun! It's so nice that you have made some new friends in Minnesota.
    I recharge my energy or have a break of my worries going to my prayer hour, playing tennis (I used to play with aunt Tracy in England; she is better than me!), I go for coffee to a nice place and I love baking! I'm the designated birthday cakes baker in my family and for my friends. I would love to bake a cake for the Ringgold family one day.
    Always praying for little Bella and family.
    The sun is here in Weybridge and I hope it will be shining in Bella's room this week.
    Love,
    Mariana, UK

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  20. Bella, I love your new hat! I am glad that you are doing well and that you stayed strong this weekend. I went for a two hour walk (hike) with my husband and our 11 month old daughter Anna yesterday afternoon, which was a lovely jaunt through the German country side. We saw rolling hills and valleys, walked through forests and fields, saw lots of animals: horses, cows, sheep and deer and were pleasantly tired when we got home. This is something I like to do to recharge. I also love to cook and bake. I made a tasty pear bread yesterday and a loaf of sourdough bread too! Wishing you well today.
    Lots of love, Laura Valetutto
    Bergisch Gladbach,Germany

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  21. Morning Bella,it is great to read that you are doing well on your 100th day as I sit here eating some apple and blueberry crumble that I made yesterday, for breakfast - healthy I know :)
    Keep up the good work Bella, so what can they wean tommorrow??
    Keep those Dr's wondering my angel - yes they do great jobs, but sometimes they just need to be reminded about the power of hope and faith, they forget sometimes after years of seeing pain and sorrow, you are here to remind hem sweetheart and are doing a great job of it.

    what do I do to recharge, well my ultimate recharge is going camping in one of our beautiful wildlife parks here, love getting close to nature :) but can only do that about once a year. the rest of the time I read a good book, bake, and especially after a very rough day at work when I am reminded how short life really is, and I need a lift I go and do some volunteer work at a local baby's home, for little children your age and younger who don't have Mommy's and Daddy's as wonderful as yours, seeing thier beautiful faces and getting lots of cuddles is my recharge :)
    lots and lots of love and cuddles
    Jess - S.A

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  22. I LOVE them apples. Keep them comming Beautiful and we will make a sweet apple pie.
    Digging your hat of the week.

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  23. Bella,
    Reading that you ROCKED yesterday made my day!!!!!! And I am SO happy to hear that you were more alert, keep it up girl!!!! You are amazing! I am praying that you have another great day today! Happy day 100 sweetie! I'll come back to see you soon, and I have a gift for you when I do!
    Love, Amanda Schauer (Bryce and Corynn too!)

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  24. Way to go Bella- 100 days!!!!! You are a miracle. Praying for you always!

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  25. Yey!! Go Bella!! We know you can continue to get better, doesn't matter if there are dips along the way. We are always heading to the same outcome, your Mummy and Daddy's dream of you being EB-free. One day, we are in no rush, we know you will get there.


    For me, reading the few inspirational blogs that I follow on the net help me to recharge mentally. I always check Bella's first these days, every morning/afternoon, as soon as I can (since I'm 5 hours ahead). If things are going well, it makes me really happy for the day, and shows me there's really nothing in my life right now that I shouldn't be completely satisfied with. It helps to put things in perspective. If things are going bad, I know I need to direct more positive thoughts to Bella! It gives me time to reflect on everything. It reminds me that Bella is fighting, and if she can, then I can too!

    I always try and say to myself 'don't put something off until tomorrow that you can do today'. I try and make that the theme of my life, and Bella helps me to do that by giving me that get-up-and-go attitude. If a one year old can have that, then I can too!!! I only hope I'm half as strong as Bella and all of you there with her!

    Becky (scotland)

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  26. Way to go beautiful Bella.....and let's give a big shout out to Jesus!! Way to go Jesus!!! Let's keep fighting the good fight. Love that piggy hat!!

    Much love,
    Neysa

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  27. heaveno!

    sweet bella, you are such an inspiration! keep up the good work! maybe your daddy could play his guitar for you today and feel all the love we are sending y'alls way through the music!

    lifting you and your family up in prayer. praying that your daddy will be re-energized to be the best mouthpiece he can be!!

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

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  28. Way to go sweet Bella! Keep moving forward, in baby steps!

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

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  29. SOoo happy to hear you had another GREAT DAY Miss Bella! You just have your Daddy tell those Docs not to rush you...you have your own pace, and it works! Love the adorable piggy hat, and you are ROCKIN' those socks too! You are on my mind all day, and now that I have my own Vision Board for you, I can see you healthy and happy all day too! You may have all the docs baffled, but WE all know that you are just healing in your own sweet time! Love and hugs honey :)

    Tim, I'm with you, I love to relax by connecting with nature. Luckily for me, I live in rural West Virginia, so I can just walk out my front door to breathe in the trees...and the cows (sometimes THAT gets interesting), heehee! When I can't go out, I turn to reading, but I only have time for that right before bed...if I'm lucky! I'm happy that you have so many wonderful friends to help you unwind, and to feel connected.
    Hugs and Blessings to all of you!

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  30. Glad you had another good day yesterday Bella! That hat is way too cute on you!

    One of my favorite ways to recharge is to curl up with a good book. A glass of wine every now and then doesn't hurt either!

    Speaking of recharging - it's time for me to go to bed! Was a long night in the NICU last night, and I'm back at 7pm tonight to do it all over again!

    Jess
    Chicago, IL

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  31. What wonderful news Bella. I love that you make those Docs scratch their head. One day their jaws are going to drop when they walk in your room...I just know it. You really are a magical little girl. And you make so many people smile.

    Today I was going to take my little ones to the neighbors to jump in their bounce house like I saw your sister doing. But it's rainy out...no fun for anyone. I guess we'll have to read lots of stories and color. That's fun too....not as fun as a BOUNCE HOUSE...but more fun than doing the dishes I think :)

    Love from Dallas!
    Amy

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  32. Oh...I forgot to tell your daddy how I recharge. I stay home with my kiddos all day, they are my job. Even though they don't pay much and are demanding bosses, it really is the best job. So when I want to recharge I have to get away like your daddy. Usually I get away to the mall because I love to window shop. I also love to read but when I get involved in a book it's very hard for me to put it down. And having kiddos makes that hard to do. So I usually save that release for when Grandma and Grandpa come to visit and will watch the kiddos.

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  33. Good Morning Miss Bella,
    So happy to read about your Sunday being a positive day. Just remember we are all cheering for you, all pulling for you, all praying for you. Day by day, slow and steady wins the race! You can do it Bella, we all know you can!

    Hope you get to enjoy the day with mommy & daddy today!

    Praying nonstop in NJ because I know you will say "I was born with this rare skin condition, but when they brought me home from the hospital, it went away."

    Tim, Angelique and Ali I am so glad you got to get out in the fresh air, enjoy a party and friends! Family and friends to hold you up, recharge you and give you the strength you need to keep moving.

    Praying nonstop
    Tina from NJ

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  34. WHO ROCKS THE NICU. . . BELLA ROCKS THE NICU. . .YEAH, BELLA ROCKS THE NICU! (Sung in my best, albeit cheesiest cheeleading voice) =P

    Yeah sweet Bella, you are doing GREAT! I love that you keep them all guessing. Your doing wonderfully Bella. You rest when you need to and take a step forward when your ready. We think of you several times a day and cant wait to see how your doing. It occured to me that I never sign my husbands name on my comments. Its not because he doesnt care sweet Bella, he just gets too upset so see you when you dont feel good. Oh and I just love your hat and socks. Ah-dor-able!

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

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  35. Good Morning! We had a busy weekend so I'm just now catching up this morning and I'm so excited to hear Bella is doing better (again!)! That's great!

    When I need to recharge I either take Jack out and run, go shopping alone, or spend an afternoon alone with a fast-food burger and fries and a chick flick (maybe you could watch an action flick?)!

    The new hat is adorable as well as the Halloween socks! I'm looking forward to a good week here in Kansas and a good one up in Minnesota!

    Darci and Jack (16 mos)
    Pittsburg, KS

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  36. Praising God for the work He is doing in Bella!!! Nothing like keeping the human doctors baffled and befuddled!!! Bella, I am in awe at the report from your daddy!! While it baffles some, it continues to strengthen the faith of many. You are an awesome little girl and we love you here in KCMO!!!!! Praying for strength for you and your family today!!!


    Michelle

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  37. God Morning!
    Bella you are head to toe fabulous!! I was sooooo happy to wake up and read such wonderful news. You go girl!

    What do I do to recharge? hmmmmmm....visit Jesus at Eucharistic Adoration, read a book, get my camera and play photographer, and sometimes my husband and I run away together. We just pick up and take a little trip somewhere. I call it "running away". Not for too long, because I miss my grandkids too much. I'll tell you a little story about that. You see, I babysit for them and at the time, Evan was 2, his sister Madeline was 1 and their cousin Emily was 1. I decided we needed to get away, so we got in the car and took a trip. We had made our way to Florida when I recieved a call from my daughter. She said Evan wanted Granny, but she told him Granny ran away. He burst into tears and said, "But, I love her!". Then, I looked at my husband, aka PawPaw, and said, "We have to go home!". We love them too. They are now 7yrs., 6yrs, 6yrs, and we have one more, Dylan, who is 4. We have a LOT of fun with them! This weekend we went camping. I bet when you get out of that hospital and all healed up, you would enjoy going camping.
    Well, the Saints lost yesterday. Bummer! But you won and that's more important! Keep up the good work!
    Still praying and sending healing blessings your way,
    Mandy

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  38. Big happy sigh! Yeah Bella! Way to keeping on moving forward! We are so proud of you! SO happy to read about the positive last couple days. Mine and Grant's TEAM BELLA! shirts come today... we are so excited and proud to walk for you on Sunday. Everlee won't fit into one of the shirts, so she'll be wearing a butterfly onesie in your honor :)
    Keep resting sweet girl! Love and strength coming your way every day.
    P.S. to recharge my brain... I like to go shopping, get coffee, or watch a funny movie.
    Buckets of Love,
    The Vanderbooms

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  39. Lynne, Bob, Jack and BenOctober 11, 2010 at 8:40 AM

    Bella - We are thrilled, but not surprised, that you are doing better. We know how strong you are, and we know what love is capable of. Keep rocking it girl! We followed the blog this weekend but didn't post, so we have a couple questions to answer. To recharge -- I do yoga, take a walk, or have a long talk with my best friend. Bob rides his bike. Jack gets in in swing chair with me and we talk and rock. Ben is Mr. Perma-Charge.

    In terms or what we are giving up? Both Bob and I are giving up being right and being safe. We got there because of you and your amazing, generous and wise Daddy. We love you all so much.

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  40. GOOD MORNING BELLA! YOUR HATS AND SOCKS ARE THE BEST! YOU ARE SO BEAUTIFUL AND STYLISH...SO GLAD TO HEAR THAT YOU ARE HAVING A SOLID COUPLE OF DAYS. YOU ARE SO BEAUTIFUL AND STRONG, KEEP UP THE GOOD WORK. HOPE YOUR DAY TODAY IS EVEN BETTER AND YOU GET TO SIT UP AND BAFFLE THE DOCTORS EVEN MORE. YOU ARE JUST FULL OF SURPRISES...LOTS AND LOTS OF LOVE IS COMING YOUR WAY! MOMMY, DADDY, AND ALI LOVE YOU SO MUCH AND CAN'T WAIT TO GET YOU BACK HOME!

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  41. Fabulous hats Bella - for a fabulous person who has a fabulous family! I can't wait to see the next installment of 'as the hat turns' :-). Have a great day!

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  42. Hey, you cute girl with the snazzy accessories!

    So we're rocking the hats now, I see! Love the look. Socks AND hats. You are our trend setter, sweet Bella. And I certainly hope the trend of the past few days continues with improved numbers. Those docs may be baffled, but not us! For we are expecting our miracle.

    What do I do to re-energize? I spend time with the kitties at the shelter where I volunteer. It's hard work, but when I walk in their room and they all (about 20-25) come running toward me...well, I must say I feel a bit like a rock star...as well as very loved. That sure puts some fuel in my tank after a long day of teaching. I also listen to music and like to play the piano. That just seems to take me to another place.

    Thinking of you all and looking forward to another encouraging post tomorrow! And remember-"Don't give up. Don't ever give up."

    Praying for healing,

    Susan
    A friend in NC

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  43. So comforted to hear it was an up day Bella! Keep baffling those doctors and proving them wrong - one day you will look back and say you had EB and another day you'll see how YOU are helping future EB fighters beat back EB!

    May you always be an example and a leader!

    Love from Boston
    Tamar

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  44. Go Bella! I can tell that you've been fulling the fluid off! You look adorable in your hat! I wish I had one. I saw a panda one at Forever 21 the other day. Of course, the store is over an hour away, or else I'd get it for you!
    You keep fighting and staying strong. Jesus loves you, sweetie.

    Savi - from Houston, TX

    My flesh and heart may fail, but God is the strength of my heart and my portion forever.
    Psalm 73:26 NIV

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  45. Wow, what a good weekend you ALL had! Glad you had a chance to re-energize this weekend with friends. The kids couldn't stop talking about all the butterflies they made for Bella today in church...what colors they used, who's names were written on them...Sarah said she used her VERY best cursive she could to write all the names - hope you can read them :) It was precious. Please remember you have lots of prayers coming from home in California - even an entire 3rd grade class!

    How do I recharge? I used to like to go for walks around our quiet cul-de-sac at dusk, though it is difficult now with a broken toe...so, I sneak off with my oldest son's DS and play a video game or two...;)

    Bella, keep up the great work. we are all praying for you. Ali, you are a wonderful big sister, keep having fun with your new friends! Ang, I love the twinkle in your eyes while you were holding up Bella. Tim and Ang, enjoy the autumn in MN, fresh air and God's abundant beauty and grace!

    Blessings,
    Nancy

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