Saturday, October 2, 2010

October 2: Day +92



Heaveno!

Well, an okay today for Bella... it was kind of a win... 2-1 in favor of Bella... (I have English Football on the brain... tomorrow Arsenal travels to Chelsea - big match up)

Points for:

We changed her dialysis circuit today, but will still end up even for the day on fluid in and fluid out. This is a definite victory as we are usually 200+ up on fluid on circuit change days. She also tolerated going back on Prisma extremely well today. Definitely in her top 5 circuit changes to date. We never know what to expect on circuit change days... some days she's tachycardic - her heart rate goes through the rough -... some days she's hypotensive - her blood pressure goes through the floor. Some days, she looks like she's withdrawing. Today, she opened her eyes for a couple of seconds a couple of minutes into the new circuit, and wiggled around for about 30 seconds, then was back to her recently snoozy self.

We weaned her ativan today and you would never have noticed. That's two good days in a row of sedation weaning, without any negative effects. We are rotating one item a day now, whereas last week we were weaning one item every 12 hours. This new pace is working better for her in terms of her being comfortable. In fact, I can see tomorrow going the same way, which is a good thing.

Points against:

We had to go up on vasopressin today to .0006 from .0005. Even after the increase, Bella's blood pressure has remained right at the minimum acceptable level, and hasn't allowed us to pull any fluid today. She was really lethargic all day again (like yesterday), and regardless of what we did, we couldn't get her pressure to have much head room, like in recent days past (passed?).

So, we came out on top for the day, but not without being scored on. As a goalie and defender, I like to keep a clean sheet (maintain a shutout), but I'll take the win over a draw or loss obviously any day of the week.

In other news, we took Ali to see Legends of The Guardians, the new animated owl action movie. Who knew you could make an action movie for owls? Ali sat through just about the entire movie - save one bathroom break (innocent enough) - and actually liked it! I thought it was going to be too scary for her, but she claims she liked it, so... Great! We then hit Macaroni Grill and a little shopping in the mall for fun. Still, it was hard to keep our minds off Bella. We know we need to unplug and recharge as a unit, but it still gnaws at me that no matter what I'm doing, my baby lies helpless in a hospital bed, for another day in a row. At least that feeling doesn't persist constantly. I know that she has a nurse in her room with her 24/7, so she is completely safe.


At times, I am able to be present and laugh at Ali or Angelique or the movie. Tonight, while waiting for our table, we played "hot potato" with the little buzzer they gave us, and we spontaneously adapted the game to say some noun before the words hot potato before handing to the next person, and it couldn't be the same thing as had been said. Ali was right there hanging with mommy and daddy for what seemed like forever! Man, that kid is S-M-A-R-T (very objective opinion, I know).


Cooling off a head booboo with... a bottle of smirnoff ice? Hey, cold is cold. What's in her mouth? Best guess wins...

Thanks for all the specific prayers, wishes, thoughts, and intentions today! It was so nice reading to Bella. I really enjoy that process. I get to feel like a daddy again, not just a caregiver. I love just resting my hand on her head or sticking my finger in her hand while I read your words to her. See, when I am working on Bella, often I have to turn my heart off to manage whatever the situation I am dealing with. For example, when we did the trach dressings and change, I am not yet accustomed to that giant LOUD hole in Bella's throat. It is rough for me to get used to. But when I'm doing those changes, I have to be very clinical, or my heart will break if I consider how far down the rabbit hole we are to be dealing with a trach in the first place. Similarly, when I am changing the dressings on her 4 lines (dialysis catheter, med line, arterial line, G/J tubes)... I need to not think about all the tubes going in and out of our daughter to keep her alive, I just need to look at the patch of skin or dressing, and not "see" our daughter. It's my defense mechanism to avoid being overwhelmed by it all.

However, when I am just reading to her, I'm not reading to her skin, or a wound. I am reading to the self inside that little patient. I am reading to her soul. It's still safe to do that; I know I can't accidentally hurt her by doing that, so I can leave my heart on, and I KNOW that she can tell the difference between the two experiences, because I KNOW that I can. SO, thanks for continuing to give me material to read to her about.

Open note to all our friends/family that did know us before the blog... just fill us in on what you guys are up to. You know what we're up to! We miss hearing from you, and it would be fun to fill Bella in on the seemingly mundane and ordinary. Frankly, it would be nice to read about the "normal" life since we are nowhere near that right now. (You didn't have to be friends or family to do this by the way. We really LOVE getting to know all of you a little bit more every day you share)


The wall continues to grow!

Thank you to all of you who have answered the call and let us in a little on your lives. I feel like we are getting to know you, and we feel closer to you every day. That means a lot to us. I bet you guys are starting to learn a little about each other as well. This IS a community. WE ARE a community. We may be here to follow and support Bella, but inevitably, we learn to support each other as well. I LOVE when I see someone comment on a comment and begin a thread of a conversation! We ARE connected. Through Bella. Think about it. SHE did this, and she hasn't even spoken a word yet. Just BEING strong, and just BEING as joyous as she was before transplant despite her disease, SHE inspired Angelique and I to step up in our own lives. If she could maintain that wondrous state, what did we have to complain about?

One day, Bella will look back and say, "Yeah, I was born with this rare skin condition, but when I came home from the hospital, it went away."

God night.


Fall is upon us...

42 comments:

  1. Dear sweet Bella - Praising God that you had a good day today! When you wake up, be sure and ask your daddy to show you the picture he posted of the BEAUTIFUL fall leaves! Where we live in TX, we don't get to see too many of these (just not enough trees!)

    Praying for you to have a great day tomorrow and that your mom, dad and sweet Ali will have a peaceful, happy Sunday.

    Love,
    Laura (for Team A)

    ReplyDelete
  2. Bella,

    Let me introduce myself. My name is Cara and I am a mommy to a little boy who is very close to your age, he is almost 15 months. His name is Ari and he is a firecracker but also a very sweet soul. He has a daddy named Sean. We live in southern Arizona and found out about your blog through Sean's sister, who is a music therapist and knows your dad.

    I can't help but think about Ari when I read your blog every night, since you are so close in age. He was born early but thankfully has been very healthy. He loves music, anything with wheels, being a ham for the camera, bath time, his Indiana Jones hat, all kinds of food, and of course his mama and daddy. I think you would like him and I know he would like you and would want to give you kisses and raspberries and 'loves' just like he does to the other little ones we know.

    I hope you have another positive day tomorrow, little miss Bella. We are still thinking of you here in the desert, and I will mail out that package I told you about yesterday, this Monday. :)

    Best,
    Cara in Tucson

    P.S. We ate at Macaroni Grill today too, YUMM!!! :D

    ReplyDelete
  3. Dear Bella,
    Things here are exciting and busy. On Friday at work, there was the biggest thunder and lightning storm EVER. A palm tree in my schools neighborhood caught on fire! All my kindergarteners were on the playground when the first boom of thunder hit and lightning crashed! Exciting day for sure.
    Your daddy needs to check our blog for some crazy Mollly videos...she's had some adventures!
    Your silly sister eats her spaghetti like my Jack....that made me smile.
    Tomorrow I'm going to church with the latest Bella update at my fingertips...we all think of you.
    team Bella has almost met the goal I made. I aimed kind of high, but I think we will get there. I made the shirts for everyone and am going to email everyone soon. Tell Daddy his request was made and ordered this morning. Hope it inspires those around you even more!
    Your skin looks so good

    ReplyDelete
  4. So.

    Ali has a wintergreen lifesaver in her mouth (mad girl - those things taste like toilet cleaner to me. Or at least what I suspect toilet cleaner would taste like if I were ever insane enough to consider the ingestion thereof).

    Do I win?

    You sound good.

    Bella looks good.

    Another glorious day here in Vancouver. The rain gods (who love our little town) are holding off thus far, though I am watching the leavers turn. Nowhere near as spectacular as that street of trees in your photo.

    It's a delight to feel like I am talking to you all. My elder daughter just walked by the computer and asked about the photo. This is the first time she has seen Bella - she's usually in bed when I read your daily posts. Straight out of her mouth were the words 'Cute baby'.

    It's also a delight to feel like all of us, your supporters near and far, have a bond.

    Life is good,

    Fondly,

    Jane

    ReplyDelete
  5. Sweet Bella - Today was an absolute beautiful day here in Houston! We do not have too many days like this and so we are soaking it up! :) We are starting to see pumpkins at the store which excites us that fall is here, regardless of the warm weather! I am praying your day is going wonderful and healing is taking place. God sure has given you a strong purpose in His plan. You have been blessed with awesome parents and an adorable big sister! I love all the butterflies in your room. Stay strong little one and we will watch and see you bloom!

    ReplyDelete
  6. Bella,

    Glad you had a mostly good day today. As a NICU nurse, I know all to well the ups and downs of an ICU course. How you have to learn how to take even the smallest victories when they come.

    It's been a rough week on our unit. We gained a few more angels this week, and it's just been hard.

    I also found out that a baby I took care of a few years ago (he would be 2 this November), passed away this week as well. He was born with Treacher Collins Syndrome, and had some deformities in his face. After a few surgeries, he was doing great. His airway was better, and he recently got his cleft palate fixed as well. He also recently started preschool for the hearing impaired, and was doing great! Earlier this week, he choke / aspirated on something. Despite all of his parents, the parimedics, and the ER staff weren't able to save him. I know that he is one of the angels watching over you now.

    Each night, I look forward to your Daddy's posts about how your day went. Even when I'm at work, I try to snag a few free moments to check up on you (although the pictures don't load on the browsers at work...).

    I'm so glad that you're overall having a good day!

    Jessica
    Chicago, IL
    (keep taking great care of fluffy Gloom!!!)

    ReplyDelete
  7. Hiii Bella Doll!

    So glad to hear that you had another great day- Praise Be To GOD!
    Well we got home from Disneyland about an hour ago, and I was so super excited that both kids were sleeping by the time we pulled up to the house! However, Christian decided to pull a fast one on us and 'pretended' to be asleep, just so he can get a free lift up the flights of stairs. And Brooklyn, she cried for a bottle the minute I started walking down the hall from laying her down in her crib. Low and behold, our daily routine began @ 8:50pm, 3hrs behind normal days...we took baths, made a bottle for the baby and laid in Christian's bed to watch Racing Strips. Earlier today, I thought about you, and wondered how you were doing today. When I logged on to Facebook and saw your daddy have some activity in accepting friend requests, I knew you had to be trucking right along!! Alrighty little beauty, off to throw a load in the washer, load up the dishwasher and go to bed to be rested and up for church in the morning! Sleep tight Princess. With all our love from the Baca household,
    nicole

    ReplyDelete
  8. ps...the foliage is beau-ti-ful!! The photo looks like a painting! Wow- gorgeous...I pray that you will soon be able to dance in the leaves- XO

    ReplyDelete
  9. Tonight Bella I was out front playing with my kiddos when a big beautiful butterfly flew by us. It was the first one I've seen all year if you can believe it! I of course thought of you and wondered how your day was going. I'm glad to hear that all in all it was a good one. I hope tomorrow is even better.

    The picture your daddy posted of fall is really making me miss Minnesota! Here in Texas we don't really get fall. We get HOT summers and windy cold winters. No pretty colors. I hope someday soon you get to see them for yourself!

    Sleep tight Bella!
    Love from Texas!
    Amy

    ReplyDelete
  10. heaveno!

    thanks for posting daily tim...i know you're tired but sweet bella has become a big part of so many of our lives now and well, you shouldn't have spoiled us :)

    sweet bella, i am so glad you had more positive results today. you are such a brave little girl with such a wonderful family! soon i hope you will be able to join them on their wonderful adventures! you know i hope one of those adventures is here to nc to see your aunt mary and the rest of the gang!! don't forget, i love to give all of your cousins candy and can't wait to do the same for you and your sister! wait until your daddy shows you the pictures of ali eating spaghetti and your mommy holding an ice cold drink on her head to help her boo-boo! i think she even had a green lifesaver in her mouth! (did that guess win?)

    i really can't wait to hear you tell everybody "yeah, I was born with this rare skin condition, but when I came home from the hospital, it went away."

    sweet bella, i'm praying for you to get all the rest you need and that your parents will too! stay positive and keep moving :)

    god bless y'all
    susan
    w-s, nc

    ReplyDelete
  11. I am up late tonight and need a break from the photo editing that I am doing. Seriously pulling out my hair. :) I needed a smile and a picture of Bella will do that any day!

    Bella- Look at all the butterflies! Butterflies for you. Kind of for me too. You see this summer has been full of butterflies for me. It was amazing because they were everywhere. Typically for us we get a few...nothing like this summer. Lots of different kinds of butterflies too! We had your typical yellow and white. Monarchs and the big black and yellow ones. We also had a few I havent seen before. Little lavender ones and brown ones with one large white spot. Stepping outside almost seemed magical...as the butterflies danced around me. Your butterflies may not dance but they are filled with love. Through you my summer continues because you are surrounded by butterflies. :) Do you feel the love Bella? XOXOXOX

    Denise WI

    ReplyDelete
  12. Jack and Molly's NanaOctober 2, 2010 at 10:38 PM

    I hope that the blood pressure mystery is solved soon with the slow but steady medication changes. But it sounds as if la Bella had another good day, and I'm glad you were able to have a bit of family time, too.
    I also loved the leaves photo; I'm originally from Pennsylvania, and fall has always been my favorite season. These trees are especially beautiful and make me remember the sound of crunching leaves on the way to school (yes, it WAS uphill both ways).
    Have a restful night and a beautiful Sunday!

    ReplyDelete
  13. She is looking better and better each day ! I got Moesha baby tights with butterflies on for Bella. I will take a picture and send it to you.

    ReplyDelete
  14. Bella,

    It's been awhile, and I apologize for that. I have been having a hard couple days with my recovery. I read, and I pray, and everytime I see a butterfly, I smile. But you are doing so well, whereas I am not, so I do not want my words to bring you down.

    Just keep on doing what you are doing, Baby Girl. You are my inspiration and what keeps me going some days. NO LIE.

    God is good.

    Love,

    Melanie

    ReplyDelete
  15. Keep playing strong Bella. You are going to win this - you're a champion and you're going to kick EB to the curb. You are your family team are so strong and are behind you the entire way.

    Keep strong little one,

    Love Tamar in Boston

    ReplyDelete
  16. Hello sweet baby girl

    I am playing Lexulous [like Scrabble] online with my husband. Our crazy kids are in bed, and may even be asleep. They are very tired as we've been away for a week on holiday. I hope so much that one day soon you will be digging in the sand with your best pal Ali.

    ReplyDelete
  17. Tim and Family:

    I love hearing about the things you guys do as a family away from the hospital. I think you are setting a greaat example for other parents who are in your same situation and may feel guilt about taking time away from their sick children. You guys are doing the right thing by getting away and it makes you stronger so you can come back the next day and do it again.

    Hope you guys have a nice Sunday and sending Big Hugs for you guys...

    Still praying for your Sweet Family...

    ReplyDelete
  18. Green fruit loop..... & thank you for the tree pic....oh how I miss the change of color....about the only thing imiss season wise from moving south...
    So our lives? Hmmmm really not too interesting...hubby is sick, finals weekend, work is a little batty...and I have a long todo list to prepare for our vacation (one week away)... Gosh, wish I could give it to you guys.
    yesterday we got disneys movie totoro....so good! There is a big and little sister in it, reminded me of ali how good the big sis was with the little one...highly recommend! Off to todays big scramble of tasks...grateful for each one. I was reading jessicas post and was reminded so strongly how life happens...may that baby rest peacefully.... I just think sometimes that no matter what I do or don't do, a greater plan is underway for each of us. Bella, you are a chosen one, a great spiritual teacher for many. Congratulations on such amazing accomplishments at such a young age... You have lapped this old fart ... And you will keep on going...i feel your fire... You my dear are simply incredible and I am so lucky to be a part of your online family. I love you.... Today is going to be another great day! :)

    ReplyDelete
  19. Happy Sunday, Ringgold family-

    Oh, the simple joys of life! Spaghetti and beautiful fall colors - among the best of the unadorned blessings we enjoy. The leaves here in NC haven't begun to change yet, but with the recent rain we've had I'm sure the "painting" will soon commence. And I can't wait. I just love fall - cooler temps, sweaters, the orange of pumpkins, and God's handiwork in the colors of the trees.

    Bella, I wish you could see me as I'm trying to write this. One of my kitties is lying on my desk, making it very difficult for me to type. His name is Sam and he is a BIG boy...like about 21 pounds of buff-colored love - complete with whiskers and tail! When I'm typing, I just rest my arms on his big, fat tummy. It's quite a sight, I must say. I bet if you could see my Sam, you would just smile and giggle and clap your hands. I can't wait for the day when you are healed and are able to do all those things.

    Take care, sweet family. Wishing you a great day!

    Praying for healing,

    Susan
    A friend in NC (I'm in Winston-Salem too, like the other Susan. Small world, huh?)

    ReplyDelete
  20. God morning Bella, Ali, Ang, and Tim,

    It is a beautiful day here in Louisiana, nice and comfy at 63 degrees right now. It'll warm up to the high 70s though. But we'll take it! It's better than the 90s and 100s we've been having! Happy fall y'all!
    So you wanted information about what we're doing. Let's see.....Today my 6 year old granddaughter, Emily, and I are hanging out. We plan on watching our favorite football team, THE SAINTS, win today (if their kicker decides to kick right)! In case you don't know, the Saints won the Superbowl last season! Let me tell you, if the Saints can win the Superbowl, you can beat this!!!! See Bella, as a Saints fan we are taught never to give up. And believe me when I say things didn't always look like there was much to believe in. But, year after year we watched and cheered! It took awhile but we got there. AND YOU WILL TOO! I'm watching. I'm cheering! Who Dat, who dat, who dat say dey gonna beat EB?!!! (that's cajun talk by the way) I'm praying!
    I'll see you tomorrow and let you know how the game went.
    Lots of love,
    Mandy

    ReplyDelete
  21. What beautiful fall foliage! Love it. Here in southern Nebraska, we don't get much of the color that other areas of the country see. Hope you get better soon so that you can enjoy the changing seasons.

    Cooley family in Nebraska

    ReplyDelete
  22. Good morning!
    I love reading your blog posts daily and hearing that Bella had a victory is a fantastic way to start my day.

    I think Ali has a green lifesaver. The "ice pack" is just what I would have used on one of my kids also!

    Enjoy our beautiful fall day, I hope the sun shines into Bella's room today (if she has a window) so she can enjoy this day that God has given us with you.

    Praying for another victory for your family,
    Holly in ND

    ReplyDelete
  23. Dear Sweet Bella,
    We are so thankful to have you, as I look out on a beautiful Sunday morning I reflect on how your story of faith, love, and strength has enriched our lives. You are a blessing and an inspiration!
    All our love,
    The Gleason's

    ReplyDelete
  24. Oh Bella you are looking so good. I can actually see the difference in your face. You're so beautiful and strong. I'm praying for you every night. You're such an inspiration to me. You lift me up everyday and you don't even know me. But I feel like I know you and that makes me feel special. Thank you for letting us in. Stay strong.

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

    P.S. I think Ali is eating a green gummie bear. How'd I do?

    ReplyDelete
  25. BELLLAAAAA!!!!!

    I hope you could hear there from here! :)

    I'm glad you've had a better week! You very much deserve it!!!

    Trent & I participated in the FAAN Walk for Food Allergies yesterday. Maybe Daddy will jump over to my blog and show you the funny picture of Trent running through the finish line. Silly kid. I think you may need to give him a talking to about Goofy, he wouldn't give him a hug!!

    You're always on our mind sweet girl! Trent received a new box of crayons yesterday...they claim to be large enough that they won't break easily so here's hoping I won't have them strewn all over the house! We're printing out your butterfly right now!!! Keep an eye out for it in the mail!!

    Hugs and kisses Bella!!!!

    -Sarah & Trent

    ReplyDelete
  26. Hey Bella! It's an absolutely beautiful day in south Alabama...78 degrees and sunny.. We have been to church this morning and then out for Mexcian at our favorite place, oh so good.. A little shopping at WalMart and Target and now we are home. My sweet husband is a firefighter and they had a house fire last night so he is sleeping away right beside me now.. I'm headed to the kitchen to bake 144 mini fall cookies and then decorate them. Stay strong sweet Bella and give daddy a wink next time he smiles at you!!

    ReplyDelete
  27. Bella! It's beautiful today in PA! I'm praying for your blood pressure and complete healing!

    ReplyDelete
  28. Hello Sweet Family,
    I miss seasons so much, that seeing your picture of fall leaves actually brought tears to my eyes!! And then I smiled at my own silliness.. although I do REALLY miss the change of seasons now that I live in south Florida. It's a small thing =). You said you wanted some normality, so here you go. Today we played fetch with the dog in our fenced backyard, we have an adorable chocolate lab who is currently 5 lbs overweight. And then the dog went swimming in our pool. She's actually a fantastic diver and made it to the bottom of the deep end today (only 5ft in our small pool, but still!) chasing a broken tennis ball. Now the dog is sleeping on the couch, I'm shopping on line for a friend's baby shower (sort of fun and sort of sad since we're now 6 months into trying for our own baby), and my husband is watching football. We had dinner with some couple friends last night and the solar panels finally got fixed after 6 weeks of falling off the roof (we are renting and the owners leave some things to be desired.. ). OK, I'm sorry, I'm trying to help, but I'm boring myself here =). I'm going to go visualize some increased blood pressure for miss Bella and then maybe I'll throw in a load of laundry. Thank you for making me smile and really, really appreciate the mundane weekend I'm having.. I mean it, writing this post has made me feel a lot better. I'm no longer feeling bored and stuck, I'm feeling grateful and silly. huh. Thanks for that, Bella! Now, rock your blood pressure so Daddy doesn't have worry quite so much. Lots of love,
    Emily

    Ft. Lauderdale, FL (originally from Portland, OR)

    ReplyDelete
  29. Hi Bella, Ali, Tim & Angelique,
    Here in NJ it is looking and finally feeling very fallish too!

    My Olivia had a sleepover birthday party at our house friday night - six 12 yr old girls, with a ton of snacks, way too much soda and a ton of balloons is kind of crazy. (Just wait to Ali and Bella have these parties!) On Saturday morning (before breakfast) they decided to write wishes on the balloons and walk to our local park (3 houses away) in their PJs and release their balloons. Olivia wrote her wish for you Miss Bella to get better real soon! (That made me very proud, mommy can fill you in on how sometimes Olivia and I do not see eye to eye and how sad I get and then I cry (alot), but watching your mom and dad be so strong is helping me deal with my little issues.)

    My girls (Rebecca & Olivia) have started working on their butterflies for you - being tweens and teens they want their butterflies perfect for you - silly girls!

    We are praying hard here in NJ and sending all our thoughs for healing and strength to you, mommy, daddy and Ali!

    Tina, Mike, Rebecca & Olivia in NJ

    ReplyDelete
  30. Martin and Victria are happy to see on the wall the butterflies we sent from Weybridge! Tim, I don't know how you manage to be "nurse, doctor" and a daddy ... you do an amazing job.
    Bella did better than Arsenal (sorry for the 2-0).
    Wishing all the best for this coming week.
    Mariana

    ReplyDelete
  31. ps. Ali is eating a green life saver gummie candy. That's my guess!
    Emily in Ft Lauderdale, FL

    ReplyDelete
  32. Sending Bella my love and prayers today. I do hope she is having a good day. By the way, isn't Ali eating one of her vitamins?

    Love you Ali, Angelique and Tim.

    Grandma Carolyn

    ReplyDelete
  33. Howdy sweet family!
    We've been away attending a wedding of one of Brad's (my husband's) cousins this weekend. I was so anxious to get back this afternoon and check on you! Bella is in our prayers and if you'd like to learn more about us you can "meet us" by stopping by our blog.
    http://betchanfamily.blogspot.com/
    Take care and heal fast precious girl :)

    ReplyDelete
  34. Hi Bella and Tim -

    I completed a 10-mile walk at a local park this morning. I finished LAST out of about 200 participants. Considering I skipped every weekly training/conditioning session in the ten weeks leading up to the walk, haven't walked farther than two miles in a single stretch in years, and I weigh 302 lbs., I'm just thrilled that I finished the thing!

    At this point, my feet, calves, thighs - anything used to walk - is so sore I can hardly move. I've lost over 50 lbs. since May 1, and I'm doing all I can to get healthier. I have no excuse not to take better care of myself.

    Reading about your struggle reminds me how truly blessed I am and inspires me treasure every day. Sending prayers and warm wishes (I'm sure you're starting to really miss California weather!) -

    Angela Ulrich
    Dublin, Ohio

    ReplyDelete
  35. Bella,

    It was a perfect fall day in Colorado. My boyfriend and I went for a long walk at a nature preserve north of Denver. The sun was bright, but not too hot, and the sky was the most perfect blue. AND, there were butterflies everywhere! Most were small and unlike any I'd ever seen.

    And the cool part: this area used to be a chemical warfare plant during WWII and beyond (you'll have to get your dad to explain this part to you). It has taken a very long time to make this land healthy again, but it looks perfect now. There are lakes and streams, with fish, birds, frogs, toads. There are open prairies with deer and bison and lots of prairie dogs. In the fall and winter, bald eagles stop here and make their nests. Here's a link, if you feel like checking it out: http://www.fws.gov/rockymountainarsenal/

    It really was amazing to think of all that had happened there, so long ago. You'd never know it now! And I thought of your journey, how one day you'll never know all that it took to get you healthy, too.

    Rest well, Bella!

    Karen Steiner
    Denver, Colorado

    ReplyDelete
  36. Your story inspires me every day! I pray for the strength of you, your wife and Bella every night. You are the strongest parents I have ever (not) known!! Thank you for your inspiration to be the best mother I can be!!
    Amber
    Humboldt, IA

    ReplyDelete
  37. Hi Bella and family. Just wanted to peek in on you before I go to bed. Looks like today was a so-so day. I pray things will be better tomorrow. Bella, you get lots of rest. I'm asking Jesus to watch over you and hold you close. I'll write more tomorrow.
    Carla
    Portsmouth, Ohio

    ReplyDelete
  38. Tim,

    Just one more thing: I know you are a music guy, so I thought I'd send you this link. It's a beautiful, beautiful song that I've heard in church a few times. It downloaded just fine for me, so I hope you and your family can enjoy it too.

    http://beemp3.com/download.php?file=4092919&song=I+Give+My+All

    Karen Steiner
    Denver, Colorado

    ReplyDelete
  39. Dear Bella:

    Hi from Kansas City, Missouri! We had a beautiful, sunny day - nice and crisp in the morning and just perfect in the afternoon. Our trees haven't really started turning colors yet(you can just barely see the green changing shade) but we've had a wet summer and fall (without the flooding that a lot of folks have had). We're getting some cool nights now, so hopefully that means we'll get trees that look like the pictures your Dad posted.

    One of my cats is trying to help me type right now (or telling me she's hungry - it's a toss-up for her) so there may be a few mistakes that I don't catch. Anyway, you've had a great week - even though it hasn't been the smoothest of roads, you are on a good path right now! Keep it up, kiddo!

    ReplyDelete
  40. Bella Babe:

    I have written before and I will write again and again. You are so loved and thought of often in my family and around the world. Your daddy and mommy and sister would do anything for you. They want you to get better and I know you do, too. You are so strong. One day you will look back and understand just how much you have overcome when you were sick. Until then, my family, your family, and the world will continue to logon every single day and look for updates on your progress, pray for you, cry with you, and hope so much it feels like it is flowing out of every pore in our bodies. You are going to get better, honey. You just keep on pulling. It's getting to be Fall and Winter is coming soon. That means snow fun on Mickey Mouse Clubhouse. You've got to get better so you can watch!
    Love,
    Beth Franzosa and Family

    ReplyDelete
  41. Greetings from South Africa, Bella. I am so glad that you came out on top today. I pray that your blood pressure will also rally again. I have an 8-month old baby girs (plus to older kids) and often when I kiss her or hold her sleeping in my arms, I think of you and pray that God will fully heal you. Keep up the fight, brave little girl!

    ReplyDelete
  42. Hi little Bella,

    We love your pumpkin hat, very Autumn, very fashion forward!!

    How lovely to see just a glimpse of those blue eyes. Keep up the great work!!!
    Lots of love,
    Your Auntie Tracy, Jake Harrison and Uncle Jon

    ReplyDelete