Saturday, September 25, 2010

September 25: Day +85


Heaveno!

Wow. What a moment. Picture me standing next to my bench this morning looking out over downtown on my way to the hospital. It is at this spot that I used to read your comments (when there was 5-10 a day), then talk with God about the day. This morning, my prayer to God was this: Please, God, don't let yesterday's blood pressure be a fluke.

Here is what I walked in to...


My heart jumped and my spirit just soared around the room. I have never felt so 'light' as I did this morning walking in to this scene. Remember, at the beginning of the week, Bella could hold her blood pressure up while she was awake, but it would TANK when she fell asleep. Well, this morning, she was comfortably in a deep sleep, and her blood pressure was ROCKING!!!!! We are already on less then half the phenylephrine we were on just 2 days ago, and just one step away from completely D/C'ing her precedex!


Even though there is some discoloration, her left leg has never looked the same as the right leg, until now.

The change has been no less than a miracle in my book. From my family to you and yours, THANK YOU for being the CAUSE of the miracle. It wasn't until we started reading your letters of support to Bella that things started turning around. I was reminded of the scene in Ocean's 13 when they read to all the letters of positive affirmation to Reuben and he makes a dramatic recovery. I know it's a spoof movie, but it has really worked with Bella! Just this afternoon, Bella's pressures started to wane a little, so Angelique read to her today, and sure enough, BOOM! Back up it went!


Ali coloring the tape to help the dialysis nurses see where the Prisma circuit needs to be after they are done.

In other news that's not so hot, Bella's Prisma circuit crashed today after only being up for 1 day. Turns out there was/is a GIGANTIC clot in her dialysis catheter. That's the one sticking in and out of her right shoulder. They had to take her off the circuit, and the are putting TPA in the lines overnight to try to break up the clot. If it doesn't clear by 6 am, we're heading back into the O.R. first thing tomorrow morning to get a new line placed. Let's hope they clear the line; no one wants another trip to the O.R. if we can avoid it.

So: visualization/meditation/intention/prayer request #1: No clot tomorrow morning.



Outside the hospital walls, we took a trip on the Minneapolis queen riverboat today, and got to go through a locke. That was cool! Being in essentially an elevator powered by water for boats is an awesome thing to behold. I am not of the engineer mindset, but a locke is definitely the stuff of Modern Marvels (although someone is bound to tell me lockes have existed for millenia). Ali had mixed emotions over the trip. I think it's because she had a hot date with Collin afterward and wanted to get to it! LOL.



Check out the kids' ramp and bumpers for the gutters! Kid - Friendly Fun!

So, after the boat, we brought mommy back to the hospital to take care of Bella. Ali and I went to Collin's home and we all went bowling, then Deb and Spence invited two other families over and we had a big party that included dinner and a camp fire! It was awesome. The Kerstens are just an amazing family, and their friends couldn't have been nicer. It was so nice to sit around and joke and laugh and be in a normal setting for a change where the stakes aren't so high. It was r-e-l-a-x-i-n-g. For that, I am so grateful. Plus, to watch Ali just beam throughout the afternoon and evening while playing with the 5 other kids there... magical. Ali is truly a magical little girl. She really hits it off with Collin's daddy, Spencer, and to watch the two of them together is really sweet.



We really didn't want to leave, except Ali was so tired, and I knew there were more than a handful of YOU ALL that were waiting for the blog to post! :) I am so beat from a fun filled day that I wanted to skip posting and go to bed. However, you are too important to Bella to skip out on, even for one night. I made a pledge that I would update every single day we were here, and I expect myself to live up to that pledge. When we were reading other blogs of Rafi and Sam while we were considering coming here, I hung on every new update to help me decide whether or not this was a good idea.


Know what? After 83 straight days in the PICU, I still think it was a good idea. Look at the waves Bella is sending out throughout the world?

God night.

69 comments:

  1. I was just about to go to bed, but thought that I'd check the blog one last time for today's update... :-)

    So glad that Bella's BP behaved itself today!

    ReplyDelete
  2. I have been refreshing your blog for the last 15 min. So glad to have an update before I go to bed :) And so glad that it was a positive one too! Great job Bella on keeping your numbers on mark! And outside the hospital walls it looks like it was a great day as well. I miss Minnesota so much so reading your blog is a guilty pleasure when you talk about it :)

    I'm going to go to bed now and sleep easy. I hope you all do too!

    ReplyDelete
  3. Thankyou for posting. I would go crazy with no post, wondering what was happening with your girl. So glad her blood pressure is holding up and that you were able to relax.

    ReplyDelete
  4. I've been refreshing the page for about 20 minutes, wanting to read before bed. ;) So, so happy to hear that Bella's blood pressure is maintaining! Also glad to hear you all had a nice time outside of the hospital today. That Ali sure is a cutie. I hope tomorrow is a great day for all of you!

    Cara in Tucson, AZ

    ReplyDelete
  5. I have been checking all day for your updates. I am so proud of Bella! God really does work in mysterious ways. I am glad that He has brought your family to this blog where you have met so many new friends. That alone speaks of so many new possibilities. On a side note, the weather looks so "Autumnish" there! I am envious. It is SUPER hot here in Southern CA!!!!
    Le Anne
    Riverside, CA

    ReplyDelete
  6. I am glad that WE ALL are working. I am sending you more prayers and hugs. I am glad you post every day because I have now become addicted. I am posting a link to your blog on my facebook tonight for all my friends to see and send more prayers for your little sweetheart :)

    Molly in BC

    ReplyDelete
  7. CLEAR OUT OF THERE CLOT!!! And GO BELLA! Saying prayers and going to bed myself. Standing on faith for even better news tomorrow!!

    ReplyDelete
  8. I checked a little while ago for the update, then checked again one last time...I sleep better knowing how Bella's day went - even as I type that I feel it may seem a little odd, a family I've never met, a child I've never met, yet people that touch my family each day. I have never considered myself to be a person of "faith" per se, I've been through some difficult personal times and have struggled to find "that place" that makes everything make sense, that gives everything a higher purpose...I think that's why I found your family, really, what were the chances? Your faith and purpose has provided me with a perspective I never thought I could relate to, let alone find comfort in but the miracle that is Bella has changed my life in the most profound of ways.
    Kelly - from Canada :)

    ReplyDelete
  9. Why do I follow your journey? I'm not sure. Perhaps because I can relate to how much you love your little girl since I have two boys around her age. Perhaps because I struggle so much with believing and having faith ("Lord I believe. Please help me with my unbelief") and yet there is something in me that knows Bella is going to be okay. Perhaps because I get chills every time I read that Bella was born with a rare skin disease, but then she went to the hospital and it went away. Perhaps because you are real and that makes you likeable. Perhaps because I have started to feel like I know your family and want to support you however I can.

    Bella,

    I am sending up prayers and good thoughts. Keep up the good work. Keep fighting. We know you can do it!

    Amy R
    Bakersfield, CA

    ReplyDelete
  10. Love this good update on blood pressure! To God be the glory! What an amazing little girl you are Bella! I can't wait to see you running around and having fun with your sister!
    Michelle - Texas

    ReplyDelete
  11. Good job today Bella, I am sure having mommy all to yourself today helped even more. Tim, glad you were able to r-e-l-a-x, even a couple hours helps in stressful situations. Keep doing what you are doing and keep the faith. You guys ROCK!

    ReplyDelete
  12. i tried to go to bed but thought i would check the blog just one last time....so glad i did! so happy that bella's bp is improving so much!! praying the blood clot isn't an issue in the am :)

    so happy to see ali having a great time and making so many new friends. i pray she will be able to take sweet bella on playdates very soon!i also can't wait for the opportunity to meet y'all someday down the street in nc!

    thank you for thinking of us when writing these updates...amazing that with so much on your mind you would take time for us! my family also is praying for bella, even though i am the one reading the blog - everybody is asleep when i read the updates..lol. we, just like all of the others around the world, are touched by bella's story and are inspired by her!

    god bless y'all!

    susan
    w-s, nc

    ReplyDelete
  13. Bella, keep those BP numbers on track and continue along your path to health. Praying for that clot to be moved on out by morning and another good numbers day for Beautiful baby Bella, who WILL be WELL! (I really do believe that, even if some of her doctors don't) Judy T. (Leah's Grandma), Bowie, Maryland

    ReplyDelete
  14. Tim,

    Rooftops lady here. I had a good shout today on Bella's behalf! It was a sunny day in Vancouver and I battled with weeds in the garden, and my children and a friend ran round the yard, and all was right with the world. And I felt a huge buoyancy from my thoughts of Bella in Minnesota, slowly brewing her way towards her future.

    Don't give Dr Doom/Gloom any credit for the surge that occurred in email earlier this week. I was not the only one to have responded to your words before Dr Evil came on the scene. What made me thrust aside my cloak of anonymity was your fear (expressed c. Sept 21) that things might not go right for Bella. I was responding to you (not to any nutty doc with a superiority complex and the bedside manner of an armadillo with a bad case of fleas) when I finally left limboland and spoke out.

    We don't hear the docs, we hear you.

    Your efforts to keep a daily record going are monumental. I have regularly wondered when you fit in time to write a detailed resume at the end of days that are often harsh and unforgivingly relentless in their pressures.

    Now I know where Bella gets her staying power.

    For all that we, your readers, have given you strength in the last few days, you must remember - Tim and family - how much you have given us. For months now, readers have gained a bit of strength and gone to bed with that little treasure every night. It's about time we all raised our heads above the parapet!

    I am honoured to be counted among your newly loud chorus, singing for Team Bella,

    Fondly (and loudly), from my perch upon the roof,

    Jane

    PS I'd definitely embroider that sweatshirt for you, with any number of direct-and-to-the-point epithets to make the doctors' eyes water, but you haven't seen my embroidery skills. They are - ahem - poor. Verging on abysmal. Otherwise I'd have been honoured to have lovingly handcrafted an 'Up yours, Dr Doommeister' sweatshirt. Oh yes.

    Sleep well...

    ReplyDelete
  15. I usually read your updates in the morning but was up late and was happy to see you had posted before I went to bed. What great news that her BP has maintained for 2 days now. Just praying for Bella not to have to go into surgery. As much as I love seeing those adorable socks, it was nice to see those cute little toes. Sending more hopes/wishes/prayers your way. A friend from the UP of Michigan.

    ReplyDelete
  16. Whoooaaa!!! Stellar Numbers Bella!! Atta Girl! I am grateful to witness this ongoing miracle. Part of what amazes me, Bella, is how far your spirit extends around the world. You have readers all over this Earth. And they are all praying, cheering, and hoping for you! That is pretty Awe-some.

    Bella, I have been following your story since the beginning. I went to school with your dad and first heard about you and your fiery spirit soon after you were born. It has been quite the journey! Out of all your lessons and mysteries, you have taught me most about hope. Even when it feels like there isn't anything left, there is always, always hope; it is what inspires patience and serenity, even when facing difficulty. If we continue to muster up some hope and continue moving forward, we are able to see the blessings in front of us, the humor and delight in each situation, and the value in overcoming obstacles. I love it. Bella, you are a living example! Give those docs a run for their money. School is in session- you have many lessons left to teach them.... and us too!

    I am praying, hoping, sending thoughts, vibes and warm fuzzies to you (especially for that nasty clot) and to your mom, dad, and big sister for hope and inspiration as you all continue the journey. I always look forward to reading the daily updates. Keep it up Bella! You are doing it!
    Much love from Gilroy, CA
    LaurenBev

    ReplyDelete
  17. Bella baby!!!!!!!!
    AWESOME way to show the docs up baby girl!!!!! You keep up the good work Bella because until you get healthy I am still cheering for you! SOOOO happy your blood pressure is doing so well, now baby girl its time to show them you can PEE and that you don't need that vent for much longer!!
    No pressure Bella because we all know that you and god have a plan and it will ripen in due time.
    So dear father please please please NO CLOT for Bellas line!!! She really does not need another OR visit father. Amen!

    ReplyDelete
  18. Jack and Molly's NanaSeptember 25, 2010 at 11:37 PM

    And look at the waves the world is sending to Bella! So happy to read about your day, and anticipating another wonderful one (highlighted by the "no clot" headline) tomorrow. I am always so pleased to know that you are able to get away for a "normal" day with Ali every once in awhile, and I'm not surprised at all that she makes friends wherever she is. Seriously, look at that face!
    Have a restful night, and thanks for putting off that rest until AFTER your blog was done!

    ReplyDelete
  19. Praying that Miss Bella keeps up the fantastic work! Miss Bella, you are doing super great and I'm so glad to hear you're BP is doing so well! We're all praying about your clot and we will keep you out of the OR. Keep up that strength! and God night to you too!

    ReplyDelete
  20. Just got home from a wedding...and no matter how tired I am...I can't go to bed without checking in here! I'm soooo happy to hear Bell's BP is doing so much better...thank you Lord! I will pray for her clot and ask that it disappear A.S.A.P!
    God night,
    nicole

    ReplyDelete
  21. Why do I keep coming back to your blog? I have thought about that a couple of days now and the answer is obvious. I have this strong feeling, or may be a picture in my head, of Bella smiling and waving good-bye to the hospital and I want to see that happen too, want to be there when you post that photo on the blog. I can't explain better (probably because I'm not very good in English) but I always keep sending positive thoughts and wishes for Bella and for you all in her family.
    Helena (from Sweden, Europe)

    ReplyDelete
  22. Bella, here in Switzerland we are seven hours ahead of you, so when I get up in the morning and check your blog and start 'wishing for Bella', your folks are asleep, tanking up for the new day. That's really cool, over here in Europe we're your 'night-shift'of wishers.
    Bella, I'm wishing that next summer you'll be out there dancing in the garden with the butterflies, that you'll be running along the sands and looking out over the ocean and you'll know that the world is good. Believe me, that's going to happen. And for now I'm wishing that the clot gives no bother and your Sunday is good and your family can rest easy.
    The blue butterflies still dance in the corner of my screen, I think of you many times each hour.
    Li MH

    ReplyDelete
  23. so happy to hear that bella's pressure is holding!!!
    I live in France and am I just starting my day, I you just made my day!! keep the good news and I pray that the clot is gone soon.

    hang in there Bella, you are amazing!

    Nathalie From France.

    ReplyDelete
  24. As soon as I saw that beautiful pictures of you, Ali and Ang smiling, I knew there were good news. And there will be more coming. Praying for that clot to disapeared. Thank you for thinking of us and finding the strength to write every day. So glad you had a relaxing and happy day.
    Lots of love,
    Mariana,UK

    ReplyDelete
  25. Go Bella :) you are doing amazing.. See we all knew you could do it.. I can't wait for the day we all get to see a picture of you wide awake and outside thos hopsital walls with your family. We love you Bella your our inspiriation.. I think we all need TEAM BELLA Shirts :)
    Christy
    momto3daughters@hotmail.com

    ReplyDelete
  26. I am really glad that you are getting better!!! Keep this way Bella!
    Love from
    Sandra, Azores

    ReplyDelete
  27. Im so happy to hear that this weekend has been going so well! Though I of course continue to send my thoughts and prayers your way, I can rest easy today knowing Bella is doing a little better.

    ReplyDelete
  28. Keep flying Bella!!

    I wake up every morning with baited breath to see how your day was and the last three morning have made me so happy for you!

    Yesterday in synagogue during a section of the service where we are just sining a melody with no words I thought of you and your daddy's music therapy and sent all my positive light and energy your way!

    Now you keep on getting stronger and better because I know your big sister wants to share the wonderful experience of snow with you!!

    Love from Boston -- Tamar

    ReplyDelete
  29. Great job, Bella! You are enjoying making the doctors amazed aren't you? I'm so glad you had another good day. You'll work through this prisma thing. Continue to stay strong.

    Praying for you in Atlanta!

    ReplyDelete
  30. Hi Bella! I know your mom or dad is going to read this to you. I hope you know how many people out here are praying for you and cheering you on. My name is Julie and I live in Maryland. I come here every day to see how you are doing, and I'm watching the updates on all of the beautiful EB kids in the BMT study. I feel so humbled when I see what EB children and parents have to face every day. I know I have my own challenges with my life and my kids (one of my daughters has high functioning autism), but I have become so aware of how blessed my life is when I see the issues that other people deal with. I cannot even imagine how you get through every day and just keep going, except that I know God is with you every step. Bella, you are such a fighter, and your parents have such a strong faith when they could so easily lose hope. I am praying every day for you and check in here every morning to see how your day has been. Please know that I am cheering on every positive step, and I'm so happy today to see your great blood pressure! Keep going girl! And mom and dad, you are "surrounded by a great cloud of witnesses", cheering and praying for you too. I hope you all have a great day today, and I know you feel all of the prayers surrounding you! Go Bella!

    ReplyDelete
  31. the first thing I do each morning is come here to check on bella! It brings such a smile to my face and heart to see a good update again! Way to show um bella! Bellas legs look amazing..what a journey so far but like you after reading all you have went thru..to give your child a chance at a normal painfree life..I think if I had a child like Bella..Id make the same choice! Go Bella Go..Fly Butterfly girl! Show the world what miracles are made of!
    and to Mom and Dad and your Sister..you keep the faith and keep marching on..the best is yet to come!

    ReplyDelete
  32. Dear Bella,

    I believe you have turned the corner!!! Keep fighting! You and your family are beautiful in very way. Tears are running down my face... What a beautiful miracle.

    Alexandra in Australia

    ReplyDelete
  33. Praising God for the miracle He is doing in Bella!! Continuing to lift your family up in prayer that this continues, that Bella progresses AND that your family continues to grow and strengthen in all of this.

    Michelle from KCMO

    ReplyDelete
  34. September 26, 2010 6:19 AM
    A friend of mine told me about the blog for Bella, and she said it was so inspiring, so of course, I had to check it out. I'm so leary on reading about the BMT kiddos, but Bella has been in my thoughts and prayers since the day I started reading. The way you write, I feel as if we are there with you all, holding Bella's hand and feeling your joy, and fear, and your total faith throughout this process. I have two kiddos with EB as well, (Zach 8 RDEB and Tommy 5, EBS).

    I'm so excited to hear about Bella doing well right now, and that is truly AMAZING!! Take one day at a time, and know that there are some folks here in Missouri thinking and praying everyday for your family!! Many hugs, Terasha Johnson and Family!!

    ReplyDelete
  35. Good morning, Ringgold family!

    I have some messages for all of you:

    1 - Miss Bella...Great job maintaining your BP yesterday! Keep up the good work. And may I add that you've got some great looking legs, young lady. Keep healing, sweet girl.

    2 - Big sis Ali...I just love the life and energy that is so visible in all the pictures of you I see. You always make me smile. I'm sure it's hard having your little sis in the hospital, but what great times you all are going to have when Bella is healed and home.

    3 - Mom and Dad...I marvel at the job you guys are doing keeping things "normal" for your family when your life is anything but normal. That's a tough road to walk, for sure. You seem to be balancing so well life inside and outside the hospital. Way to go!

    4 - Tim...A huge thank you for your dedication and diligence in maintaining this blog. That is no small feat, for sure, considering how whipped you are at the end of every day. I especially appreciate that today you gave us something specific to pray for (no clot). I like knowing exactly where to direct my prayers. That really helps.

    I hope you all enjoy the rest of your weekend! Looking forward to more positive news tomorrow.

    Praying for healing,

    Susan
    A friend in NC

    ReplyDelete
  36. Dearest Bella: Just loved looking at the pictures of your beautiful legs and toes. You are an amazing little girl and you are loved by so many people all over the world. Keep up the good work. Your Mommy, Daddy and Ali are waiting for you to get better so you guys can go home to California before you are snowed in.
    You are truly loved and so blessed. Lots of love coming your way, beautiful Bella. Will continue the prayers for you baby girl. Love and peace. Love Leah's Nana (praying here in Rocky's town, Philadelphia, Pa.)

    ReplyDelete
  37. Go, Bella!

    Still praying for you in Missouri....

    ReplyDelete
  38. Good morning, sweet Bella (and your sweet family too!)

    Praising God for reading good news about you this morning and will pray that the clot is already gone as I type this. We love you all the way from Texas!

    Laura

    ReplyDelete
  39. GO BELLA GO! We are here praying and thinking positive thoughts for you! You can do it Bella! You can do it little by little, day by day, get better and better! Team Bella is strong - keep fighting baby!

    Tim - thank you for being so generous to us and allowing us to be part of your family!

    Love the picture of all 3 of you! Miss Ali you are a real doll!

    Prayers continue nonstop here in NJ! Tina

    ReplyDelete
  40. Little Bella,
    Hip Hip Hooray!

    ReplyDelete
  41. What a beautiful picture of the three of you. Go Bella Go! Grandma loves you. Hope you have a good day.

    Love always,
    Grandma Carolyn

    ReplyDelete
  42. Alrighty, pom poms dusted off...marching band cueing up in the background... give me a C. C! Give me an L. L! Give me a CLOT-BE-GONE!!! Team Bella is all set to keep cheering you on!

    Bella, I was so thrilled, ecstatic, well, just plain tickled pink to read about your blood pressure these past few days. Go warrior Bella! While I wish with all my heart that you didn't have to fight this battle, I am honoured to watch the strength with which you fight. You will come out the other side. Not only will you have fought a disease but you have touched so many (myself included) with your bravery, fire and faith.

    You are God's special warrior. He is walking with you hand in hand during this time. Holding your spirit close while your body heals. He is holding you in His arms until the time when your body is well enough so he can pass you back whole and healthy into the arms of your Mommy, Daddy and Ali. What a day that will be!

    What a wonderful picture. Your legs look sooooo good. Ahhhh, baby toes. A miracle in themselves. My littlest guy, Reid, is just about 2 months younger than you and I love to squeeze his pudgy little toes and feet. I think he gets annoyed with me but I just can't help it. Tell those angels that they need to give your toes a squeeze from me.

    Sending lots to prayers your way. I pray that your blood pressure continues to improve. And today I will pray super-duper hard for the clot to dissipate. Clot be gone!

    Keep fighting -- show 'em what ya got!

    Tell your Daddy that we'll be standing vigil with him, your Mommy and Ali until you're well. Go Team Bella!

    Love and hugs,
    Kelly in Tampa

    ReplyDelete
  43. So glad to hear that Bella's BP was doing well, I keep checking in to see her progress, thanks for keeping us so well informed Tim.

    You and your beautiful little family will continue to receive all the prayers and positive thoughts I can send.

    Take care, Stay strong Bella,
    Darci

    ReplyDelete
  44. WOOT WOOT BELLA! The triplets and I are doing a happy dance for you today that your blood pressure is doing well. We will be praying the blood clot goes away safely and quickly. Hugs!

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

    ReplyDelete
  45. Big exhale and then a smile......so SO happy to hear you are doing better Bella! Keep it up! Lukas saw your picture the other day and informed me "that baby wants to go home. She doesn't want anymore shots." I think he's on to something.

    xoxo
    Rada

    ReplyDelete
  46. Thanks for the update on Bella! I'd never commented until 2 days ago, but now I will everyday
    Bella- keep on fighting! I am praying for you. You WILL one day be healed.

    ReplyDelete
  47. Go Bella Go!!!

    If I could read to her myself, I would, but I can't - so I will comment on her blog and send well wishes!

    Keep fighting little Bella - you CAN do this!

    ReplyDelete
  48. Bella - Here's to another great day! You have an entire world of people pulling for you.

    To Alli - you are a wonderful big sister. I loved the picture of you coloring the tape for the prisma machine.

    ReplyDelete
  49. So thankful for the encouragement of the increased and more stable BP. Praying that it continues, and that the clot gets busted!

    Karen in Canada

    ReplyDelete
  50. Bella! Great work! We are all pulling for you! I couldn't wait to hear how Fridays blood pressure improvement held on Saturday! I can't wait to hear how today goes! I will be checking in on you again before I go to bed!

    Hugs from Colorado!
    Cathryn & family

    ReplyDelete
  51. Way to go Bella! You just keep that blood pressure up and prove the naysayers wrong! And look at those BEE-U-TIFUL legs! Woohoo! Praying that they're able to clear that clot out of your line so no OR is necessary. Tell your big sis that I love using the bumpers when I go bowling too!

    Love from Tennessee,
    Tracey

    ReplyDelete
  52. Hi there, all the way from South Africa, your blog is my first stop each morning, I can't start my day without checking on your gorgeous fighter, those numbers look awesome, go Bella, you can show those silly Dr's - I am an ICU nurse - I hope the TPA and all the prayers have done thier job and that you can avoid surgery.
    I love to see pictures of both your beautiful girls, and those socks are indeed fabulous :)
    Take care and know you are always in my thoughts
    go team Bella
    Jess - South Africa
    p.s any chance that we here in S.A would be able to get your book
    oh and Lockes have been around for centuries ;)

    ReplyDelete
  53. Yay for good days! I will continue to pray for Bella's continuous improvement and complete healing! Also for the love comfort and support of y'all as you love comfort and support her.

    Lauren,

    A momma in TX

    ReplyDelete
  54. Nice legs Bella! Lookin good baby girl. I'm so so so glad to hear that you are still fighting and doing so well. You are one awesome child. I'm so sorry I didn't comment last night. I always try to read your blog before I go to bed at night but I was feeling really sick and just had to lie down and go to sleep. But of course I still said a prayer for my friend Bella.

    At church today I told everyone about Bella and Daylon and shared my testimony of the power of prayer and positive thinking. Everyone was so touched by your stories and agreed with me that you are some special spirits. Stay strong Bella! I'll be praying today that your clot clears up and that Prisma can begin working again tomorrow. We don't want to hear about you going to the OR tomorrow!

    Lots of Love,
    Amber Craig, Malorie(2 1/2), and Liam(8 mos.)
    The McLaughlin Family,CA

    ReplyDelete
  55. Hi, so glad to hear good blood pressure news! I got connected to Bella by my interest in BMT.
    My youngest daughters uncle lost his fight with leukemia after his 2nd BMT just 12 hours before
    she was born. Then some time ago I was following a caring bridge page for a coworker who also had
    leukemia and a BMT when I discovered and started following Keric's journey. Wow. I was awed
    by the strength I could feel in the families fighting EB. I had never heard of EB before. The kids with EB and you parents are my heroes! I am uplifted by your courage as you work through the struggle that is EB. I try to check in with Bella everyday because she deserves at least that from me.

    Incidentally, I live in Minneapolis. I am happy to hear that Minnesota has been able to give you some small joys during your journey. I am particularly happy that our Ronald McDonald house can be there for you in ways I never even knew about! (and they have my regular support!). Also, my youngest
    daughter...who lost her uncle before they even met...well she is merely steps away from you.
    She is a student at the U of M and just recently started a full time job with the College of
    Pharmacy, and her thoughts and prayers are with Bella everyday too. We are hoping and praying that this BMT trial finds the path to cure for EB.

    Robin
    robin2821@aol.com

    ReplyDelete
  56. Bella, I know that you don't understand about blood pressures, heart rates, labs, dialysis, lines, and all those other medical terms and numbers, but that's part of the things that keep us grown ups happy. Just know that Jesus is holding you close and taking care of you. He gave you a really nice mommy and daddy to take care of you and a big sister to love you and play with you when you get well. And, you have another huge family that loves you. People from all over the world love you and pray for you every day. You just lay there and get better. I know that you must be feeling bad and hurting, but the doctors are working very hard to make you get better. There is a whole new world waiting for you when you wake up.
    Carla (Portsmouth, Ohio)

    ReplyDelete
  57. Hey Bellagirl! Very proud to hear you're doing fantastically!!!! Those are some pretty cutesy legs you're displaying! You need some pretty nail polish on those cute toes of yours pretty soon! or some new socks to pull off the look! I think someone should find/make you some ruby red slipper shoes like Dorthy on the Wizard of Oz, cause like her, you're a fighter !
    Hope to hear today is going well! I"ll check back tonight for an update perhaps!
    Love from Wisconsin
    K, M, J, I, J

    ReplyDelete
  58. Here in Cairo, Ga, I am still praying for your family! Come on sweetie, you can do this!

    ReplyDelete
  59. Hello!

    I have been meaning to comment the last few days! Bella has been such an inspiration to me! I pray for her daily and check the blog for updates before I get ready for work in the morning! I can't wait to see what new blessing and miracle God has been working in her life! Thank you so much for keeping us all updated. Even though we have never met, I feel connected with your family!! My girls love looking at your little ones pictures! Praying daily for sweet Bella!

    Kara, New York

    ReplyDelete
  60. This comment has been removed by the author.

    ReplyDelete
  61. Oh what fabulous news! Keep those pressures up baby girl!! Very happy to hear there was more relaxing time for Dad and Ali, and that Mom got to spend some alone time with little Bella. A few days ago, I was drowning in sadness. So much so, that I forgot to focus my intentions in the proper place. So, I am changing up my intentions for Bella a bit...they have always been that she WILL BE WELL. But my intention is for her to BE WELL, not get well in some distant future. So for all the wonderful people out there who have been pulling and praying and hoping the best for her, I believe that the Universe has heard us, I believe that Bella is AT THAT CORNER, RIGHT NOW, and that we are all with her as she turns it. Because Bella, beautiful baby girl, as far as I am concerned, you have already been healed! Blessings to you all, I am honored to be a part of this community!

    ReplyDelete
  62. So happy to read Ms Bella is holding her own. Good for you - reading to Ms Bella. She needs to hear your voice. To know that you are near. To know that she is deeply loved by you, by others and especially by God. Keep us readers informed. Blessings. sg-KS

    ReplyDelete
  63. So happy that clot broke up! You go Bella - keep it up! We are all still rooting you on!

    ReplyDelete
  64. Hey Bella,

    I have been away from my computer for a couple days, and I was so excited to see the improvements you've made. Go, Bella, Go!

    Martha Cate

    ReplyDelete
  65. Hi Bella! I just found your blog a few days ago, and you have already inspired me so much. I am praying for you and I hope you feel better soon!
    -A in Ohio

    ReplyDelete
  66. Go Bella Go !!!!
    Go Bella Go !!!!
    Go Bella Go !!!!

    I am so totally team Bella now :) Keep those pressures up and show those docs a thing or two about "statistics" and what they can do with em. You legs are absolutely gorgeous :) Keep up the ginormous effort baby girl... It will all be worth it in the end. Ali.... you remind me of a ray of sunshine, bringing warmth and happiness to those around you. So Beautiful. I have daughter about your age, such a fun time, everyday is a new discovery. Keep Smiling Sunshine. Mom & Dad.... Your amazing! the strength and resilience you have shown in the face of this frightening journey.... absolutely breathtaking. I pray that one day you and your family can have a stress free and pain free existence.... and until then i pray that you continue to have the strength to make it through each day.

    Love and prayers from Maryland

    ReplyDelete
  67. (Please "cheer" this to Bella!"

    Bella, Bella, You're so fine!
    Bella, Bella, You blow our minds!
    Goooooooooooo BELLA!!!!!!!!!!!!!!!!

    Love to the Ringgold Family!

    A family in Tennessee

    ReplyDelete
  68. Bella and family,
    So excited to read the update. I love checking in and seeing such great news. You all astound me with your love, commitment to one another, and zest for life. Bella, keep up the good work, girl. I'm thinking of you and praying for you and your family.

    ReplyDelete
  69. Bella...I must admit I love baby toes and feet. I love to take pictures of my sons (Noah) and daughters (Clara) feet. Ok lets make that anyone I take pictures of under the age of five. :) So the picture of your legs and feet brought a huge smile to my face. Keep fighting Bella. XOXOXO

    Denise WI

    ReplyDelete