Sunday, October 3, 2010

October 3: Day +93


Heaveno!

Well, one more week till we head home!

PSYCH!

One more week till the infamous DAY +100... that's the pot at the end of the rainbow, or so we thought, where everything would be just magically better! LOL. Wow. After being in the hospital for 100+ days now (we were admitted on June 22) and watching many kids come and go through here with not only EB, but ALD as well, the 100 day mark is just a line in the sand. It isn't the end of anything. This rant may have a negative tinge to it, but any family who has been through BMT knows EXACTLY what I mean. Any family considering BMT needs to know that Day +100 isn't any more final than any other day. It's just a marker to measure progress, but it is by no means the finish line. This is the part they really don't hammer home for you as you go through work-up. I'm sure they'll tell you they do, but what you hear when they go over everything is, "God willing, my child won't have any of those problems." At least that is your hope and your prayer. No one plans for complications, but I think in fairness, maybe you should. All I know is that we're not going anywhere for quite a long time. Other kids do the BMT shuffle... they get discharged, then they spike a fever, head to the emergency room, and earn a 1-3 night stay back on 5D, then they go home, and some time later, they spike a fever, and they earn themselves another hall pass. It goes on and on.

Now, to be fair, this is not the case for many kids. They tip-toe through the mine fields of BMT somehow and slip through and out the door the other side better for it. However, this is not an overwhelming majority. It is a majority, but probably only 6 out of 10, as one doc told me. The other 4? The BMT shuffle, or the ICU shuffle, or worse. This is the reality of BMT. Don't let anyone fool you into thinking otherwise.

You might be saying, "Wow, Tim, what side of the bed did you get out of today? This doesn't sound like you." That may be true. I mostly try to present the positive in every situation. Today, I just feel like telling it like it is, and letting you decide how you'll handle it.

What set this rant off? Nothing, really. We had a wonderful day, and Bella won her game, this time, the score was 4-1. (The Arsenal score was 0-2 to Chelsea today unfortunately. GREAT game, though)

Points for Bella:

They wanted to get 60 mL off her by the end of the day, and looks like we'll hit that.

We weaned her methadone today, and she has tolerated the wean schedule quite well over the past 72 hours, with little to no tremors and hardly any PRN doses of sedation.

They turned down her PEEP on her ventilator to 5. This is the lowest support setting they go to before extubation. The next step for Bella will be a "Trach Dome" which warms and humidifies the air going into her lungs for her since her mouth and nostrils have been bypassed. The key difference here is that she will be doing ALL the work, no more gentle help from the vent. This should be fine because...

Bella's three pressure support trials a day are now 2 hours each. So, she is already breathing 25 % of the time on her own and she is doing great at it. I think it's a little tiring for her, but not too much that she can't handle. It is actually helping with the sedation wean, because she is now a little pooped out from all this work, and it's enough so she doesn't waste any energy with the shakes.


Points against:

They had to go up to .0007 on the vasopressin from .0006, and that again is just to maintain the minimum acceptable mean pressure of 45-55. Seems like those 100 over 70s days are gone for now. In reality, this is a better spot for her heart to pump at, so it's all good.

Ah, the ebb and flow that is Bella. Again, it is important to take the win even if we were scored against. We are still ahead of the game. Today, when I sat Bella up to change the dressing on her ulcer, she was alert, eyes open a little, and very calm. The respiratory therapist and nurse helping out just talked to her while I worked on the wound, which really is looking a lot better. The nurse was amazed how strong Bella is physically still, given how long she has laid on her back. I agree. Today, I tried straightening her right arm to clean it and she didn't feel like that would be fun. I had to really exert way more force than I imagined necessary to 'urge' the arm to straighten. That girl has some GUNS still! I am so proud of our little OX!


This afternoon, we took a nice drive out to an absolutely LOVELY town along the St. Croix river called Stillwater. Holy cow, it's right out of a movie it is so quaint. Then, we drove over to our friends' home, the Moorelands. Lonni Mooreland founded PUCK, a charity dedicated to assisting the research going on at the U for ALD, FA, and EB. Their daughter Sarah passed away on the day of transplant in June of 2008. PUCK was the first partner organization that we donated proceeds from Bella's Blessings: a Humble Story of Providence to.


We had the most wonderful time playing in the leaves in the front lawn that Jay was raking when we got there. Let's face it, I was jumping up in down in my seat as we pulled up, because I was going to introduce Ali to jumping in piles of leaves, a pastime from my childhood! We had so much fun. I will definitely be sore for a couple of days! A nice neighbor couple, Liz and John, came over also and brought their kids, Kate, Weit, and Blake, as well as their dog, Hershey. We all had lots of fun! Thanks again, Lonni and Jay!


Thank you to all who have taken the time to come out of the darkness and share about your selves and your families. I feel like we're getting to know each other better! Even Bella's nurse, Lori, recognizes the names and comments from some of you! We are a community, and as we learn more about each other, and as we are known, our bond strengthens. As our bond strengthens, our ability to make manifest our prayers, wishes, intentions, and thoughts strengthens. Up until now, there has been a hub (us) and spokes (you). Now, we are indeed creating a web. A web that not only emanates in and out from the center, but also around (the country) and around (the globe). What an exciting thing to be a part of! Thank you for being a part of Bella's web. Thank you for being a part of Team Bella.

P.S. Please go visit and say a prayer for Baby Elle. She is in Daylon's old room in the ICU two doors down from us and having an increasingly rough time of it. She is a doll, as is her family. Please go send them some love and support. Thanks.


Ali and Bella's ANGEL of a nurse, Lori...

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

God night.


Ever wonder how to balance your yogurt cup on your spoon? Consult the great Ali...




36 comments:

  1. Dear sweet Bella-

    Continuing to pray for you! It looks like "slow and steady" is the best way for you to win this race - will pray for strength for you and your sweet family. Looks like fall in MN is gorgeous!! We had 65-degree weather in TX today - perfect for going to a TX Rangers game!

    May the Lord bless you and keep you...

    Love and prayers from TX,
    Laura

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  2. Hi Y'all,
    I'm just checking in before I head off to bed. It looks like y'all had another full day! I find nothing wrong with your down feelings. They're your feelings. No one can go through what you do and be happy and upbeat all the time. Feel, acknowledge, work through them, just don't let them consume you. I see how strong you are and have no doubt that you will be in a different frame of mind soon. I can't begin to imagine how you feel, how you get through the day. But you do, and that's what counts!
    I love the picture of Ali kissing Bella! Such love!
    I'm still praying for y'all, don't doubt that!
    Oh, and by the way, the Saints won! Barely, but hey, a win is a win.
    Lots of love,
    Mandy

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  3. Go young lady go!
    You are doing so much better!

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  4. I also must ask that anyone that happens to read my comment goes over and shows Elle some support. These kiddos sure work their way into a heart so quick. I have seen what prayers can do. Elle needs them now too.

    Bella- I love the picture of Ali kissing you...it looks like a "good" one. :) Sending you "air kisses"...trust me they are all "good" ones. :) Sending you love...feel the warmth. xoxoxox


    It looks like you all had so much fun in those leaves. I wish I could have been there to join in. :) Hang in there Tim. I know easier said than done. Someday you and Bella will look back and say "Yeah, Bella/I was born with this rare condition, but when we/they brought her/me home from the hospital, it went away.

    Denise WI

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  5. To all you Ringgold fighters,

    The one hundred day threshold must feel so tough to approach when, in the dizzy days before Bella's admission to the programme, you knew of the risks but quite rightly just hoped against hope that you'd bypass the troughs and valleys that might extend your journey.

    I didn't comment in those days. I remember the photo of Bella on the plane wearing your hat. It seemed like Minnesota would be an interlude (albeit a tough one) before her healthier life began.

    But lines in sand are just that, really, aren't they? Lines in a substance that is notoriously volatile. And while the hurdles appear to get ever higher, and the goalposts move around (to use an analogy that may warm your footie-loving heart!), I would just like to reiterate how honoured I am, Tim, to be here. Perhaps Bella's longer-term journey is reaping rewards in odd places; she draws us together, she teaches lots of us lots of things, she encourages some of us to slow down, to be more considerate, she has gently guided some of us towards a start as a volunteer, she has no doubt stopped a lot more of us from being
    impatient. She's working wonders from her supine position!

    Ang, Ali and you, Tim - her voice - are a force to be reckoned with. Even when it seems so slow, and even when the answers seem so elusive, I have no doubt that you are going to reach wonderful new ground.

    Cloudy today in rain town. No eagles and no hummies. But plenty of noisy Stellar's Jays. Now, that's a bird with attitude. Kinda reminds me of some people I know...

    Keep strong,

    Fondly, most fondly,

    Jane

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  6. You know, in my Kindergarten class we have a party on the 100th day...celebrating all we've learned and how we've grown.
    I'm Not saying its been an easy 100 days for you, but you can celebrate as well...Bella's reached so many people in 100 days...hang in there!
    TEAM BELLA, is kicking butt...check out the team page!
    shirts are online...And other little details have been worked out. Can't wait to hug all of these people who are now connected to me, because of Bella. Amazing!
    And...What was Ali eating??

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  7. whoa.... 100 days You are all troopers I tell ya! Keep hanging in there and we'll all keep hanging with you!! Glad you got to go to Stillwater today. such a pretty town, especially this time of year :) Also, we are camping next weekend if you are up for it, AND you have an open invitation to dinner at my house any night.

    Bella girl- Keep resting up and we'll keep wrapping you in our prayers everyday!

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  8. Between Tim and Jane's writing, I am stumped when I begin my post! All I know is that Bella warms my heart and inspires me daily. Really Bella, you do...you have taught me patience, to be grateful and to respect each minute/moment that passes. You are beyond precious to me...I adore you! Keep fighting baby girl! We are here praying for you and cheering you on...our prayers won't go unanswered :) Sleep tight and I can't wait to check back in with you tomorrow. We love you,
    Nicole and fam

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  9. Bella ~ I am thinking of and praying for you tonight. Also for Elle who your dad introduced me to this evening. I searched through her blog too and I so look forward to the day when you girls are playing (maybe together?). You are a fighter Bella, I am so inspired when I check in on you each night. I am praying for your team of doctors and nurses also.
    Today we kept the windows open until about noon! That is such a rare experience for us and we are enjoying the time. We didn't make it to church this morning and we sure missed it. My 6yr/3yr old kids and I did make it out to get a sonic coke! :) One day Bella, you will get to taste a sonic coke! You are a blessing Bella and you are loved! ~Michelle (Hou, Tx)

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  10. I just read an amazing book called The new land (I think), by Moberg.... Its about swedish immigrants to MN, and they actually settled around Stillwater. It's an absolutely amazing book. So hence your movie !

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  11. I totally love the picture of Ali giving a great big kiss to her little sister Bella. So precious. I'm glad to hear you had a pretty good day today Bella. I'm so proud of you.
    It's been a rough couple of days for our little family. I have two beautiful babies, Malorie who is 2 1/2 and Liam who is 9 months. I have been a stay at home mom now for approximately 1 1/2 years and its been wonderful. Very challenging at times but so rewarding as well since I get to be the one home with them everyday witnessing the miracles that are my children. My husband has had a great job working for Fender Musical as am IT Specialist for the past 4 1/2 years. It's good pay and great benefits. However, on Friday they laid him off due to budget cuts and now our world has been turned upside-down in an instant. My husband was so devastated when he found out that he cried right there in front of the HR manager. I have been in such a slump the past few days. However, thru you my testimony of the power of prayer has been strengthened and so I have been praying everyday asking God to please watch over is and help my husband find another job quickly. Of course I have 2 babies in diapers right now and that can be so expensive. I am so blessed to have such wonderful people in my life. When we got home tonight from my moms house we had a bag of groceries waiting for us and inside it was a pack of diapers and a pack of wipes. I hadn't told anyone that I needed those things but the Lord still provided for us thru our friends.
    Bella, I am so blessed to have the opportunity to read about your miracles everyday. I know that if not for you my faith would not be this strong and my life wouldn't feel as blessed right now. Thank you. Stay strong.

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

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  12. Poor Bella. It is really unfair to be forced to live a childhood like hers. I wonder how long her small heart and lungs are able to cope with the extra load. Is there any evidence that her brains are working like they should after all this? It is simply so sad for her - and for her sister, too.

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  13. Wow.........I mean WOW!!!!!!!!!! The Anon poster above me can be the new Dr Doom!!!!!!!!!!!!!!!!!! What the heck kind of comment is that!!!!!!! Go away anon! We want positive uplifting comments here not your doom and gloom. This family knows full well what Bella's status is because Tim is in rounds every day hearing it first hand!
    Tim I am sorry but that comment just pissed me off!!!!! I am beyond mad and if I could reach through my monitor and shake that inconsiderate person I would!
    Please please please dont let that comment be one you share with our Bella Tim!!!!!
    Bella baby you just keep up the good fight...slow and steady wins the battle!!! Who says it has to be a short fight! Like sands in the hourglass the time is always shifting!
    I know that times are trying for you all but I pray for your continued love, strength, and support to Bella and family.
    The Stacy family is still here praying you all along on this journey.
    Marsha, Rob, Robbie (newly 12) Brian (9), and Courtney (7)

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  14. Keep it up Bella! I'm still praying for you!

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  15. Beautiful pictures and nice memories of Tim's childhood.
    Keep fighting! Don't give up! We are not and we will continue praying even more on day 100th.
    Love,
    Mariana,UK

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  16. Wow, first off I have got to comment on your sweet daughter/sister Ali. She just seems to be such a happy, full of spunk, and silliness and love. What an absolute treat in these tough times for you all. I really says a lot to what kind of amazing parents you 2 are! Tim I love love love that you go right in there and jump in the leaves like the kids. What fun! Bella dear I am so happy that you are making small strides each day! Way to go on breathing so much on your own! Tim, last night I showed your blog to my husband and he was also so amazed at your little bella's strength and with your families also. I have been praying constantly each day for you bella, continue to fight little one you are so brave!
    Love
    Jessie Atlanta Ga

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  17. Bella, you continue to amaze me!!! Good work on the breathing. Your family, the genetic ones and the virtual ones, cannot wait to see you smile again. Have a good day today, little one. Love from Weaver-Densford (just a couple buildings away)

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  18. Tim -
    Was glad to read your reality check. As a RN I always encouraged reality as the foundation for all hope. Am in Baltimore on business, will continue to check in daily and pray with special intention at daily Mass.

    Elizabeth
    Amarillo

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  19. Never feel bad about "ranting" on the blog... this is your voice - your outlet for ranting!

    Looks like you all (especially Ali!) had a fun time in the leaves - ahh.... those were the days!

    Jessica
    Chicago

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  20. I totally agree with Sara's comment about celebrating Bella's 100 day mark! It's an achievement - even if it's not the one we had all planned/hoped for! Bella keep fighting and showing your strength - although next time, you might let your Daddy win the arm wrestling match - you don't want to embarrass him in front of Lori! :-)

    Bella I recently shared your story on my blog with all of my friends and I know for a fact that you know have a few more virtual friends that are so inspired by you and check in on you every day and pray for you and the entire family - just like I do!

    Our weekend here in KS was a busy one! The weather was gorgeous, we had a baby shower and a birthday party to attend and Jack (16 months) had a blast at both! I know you will soon be having a blast with Ali too!

    Keep up the good work Ringgold Family!

    Darci and Jack Spear
    Pittsburg, KS

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  21. Good morning!

    I don't have much time this morning because things are busy, busy here at school. Just want to stop by and wish you all a good week. I know the days probably run together when you're dealing with the hospital, but I hope that perhaps you can harness some of the energy of starting a new week with the promise it brings.

    Please know how much you are loved and supported...from near and far! You planted the seed (your blog) and look at the garden that has sprung up around you. A garden filled with lovely flowers (your blog friends) that hopefully give you support and something pretty to dwell on during difficult days.

    Take care, sweet family. And next time Ali gets a chance to kiss Bella, please ask her to slip one in for me!

    Praying for healing,

    Susan
    A friend in NC

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  22. Howdy sweet family,

    Praying for another Bella high score day. Enjoy the fall weather - it is so beautiful!

    Lauren in Spring, TX - (A momma in Spring)

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  23. Not only do we learn so much from Bella
    about strength and love and courage
    but this weekend I also benefitted from Bella's blog
    and avoided being stuck in traffic!
    Thanks to Tims football update I knew to avoid Chelsea and went the long way around and made it to lunch on time. !!!
    Thanx !

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  24. First off LOVE the pic of Ali kissing her sissy! And the one of you full blown diving into the giant pile of leaves! Classic, but made me miss you! Second, YEAH to the awesomeness of Bella's pressure trials :)
    She is an OX! So happy to hear the strides she is making and the games she's winning :)
    At your request, we had a nice weekend, but Grant worked the weekend, so we missed him. Buuuttt my sisters and Mom came out yesterday and we had a girls day full of shopping! Trying to train Everlee young to LOVE shopping, since it's our favorite past time :)
    Praying for energy and strength for you and Ang and continued success for missy moo!
    Love you all dearly,
    The Vanderbooms

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  25. Jack and Molly's NanaOctober 4, 2010 at 8:27 AM

    Never apologize for the need to rant. It's a coping mechanism and pretty healthy, I think. Seriously, don't you feel better for it? Of course.
    LOVE LOVE LOVE the photo of Ali and Bella; isn't THAT what this is all about? Never ever lose sight of your goal - TWO beautiful healthy daughters! So happy you had time for a romp in the leaves - you DID rake them back up when you were done, right? I remember back in the "olden days", we (I'm #2 of 4 kids)would rake them up, transport them to the curb in front of our house and stand back as our dad burned them. Wow, we sure couldn't get away with that now. Thanks for the memories - both MINE and the ones you made with Ali yesterday.

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  26. Hi Tim: I really don't know how you do it every single day. I would go crazy being in that tiny room and watching your baby go through this journey, the good and the bad.
    Extra prayers for beautiful Bella and the whole family. Hang in there. We all love you guys so much. Love and Peace. Love Leah's Nana

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  27. PRaying for you and your family.
    Sweet baby...get better soon!
    XOXO

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  28. What a great smooch, Ali. You are such a great big sister.

    Bella keep doing your thing! Hang in there!

    Tell Elle's family hi for me. I met them in Stanford this summer. Elle is such a cutie pie. I wrote on her blog, too.

    Much love from Louisville, KY.

    Leslie

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  29. UNFAILING LOVE- CHRIS TOMLIN

    "You have my heart
    And I am Yours forever
    You are my strength
    God of grace and power

    And everything You hold in Your hand
    Still You make time for me
    I can't understand
    Praise You God of Earth and sky
    How beautiful is Your unfailing love
    Unfailing love

    And You never change God You remain
    The Holy One
    My unfailing love
    Unfailing love

    You are my rock
    The one I hold on to
    You are my song
    And I sing for You

    And everything You hold in Your hand
    Still You make time for me
    I can't understand
    Praise You God of Earth and sky
    How beautiful is Your unfailing love
    Unfailing love

    And You never change God You remain
    The Holy One
    My Unfailing love
    Unfailing love

    And everything You hold in Your hand
    Still you make time for me
    I can't understand
    Praise You God of Earth and sky
    How beautiful is Your unfailing love
    Unfailing love

    And You never change God You remain
    The Holy One
    My Unfailing love
    Unfailing love

    I will praise You
    Praise you God of earth and sky
    How beautiful is your unfailing love
    Unfailing love

    And You never change God You remain
    The Holy One
    My Unfailing love

    Unfailing love
    Unfailing love
    Unfailing love
    Unfailing love
    Unfailing love"

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  30. heaveno!

    tim,

    first things first, what was in ali's mouth??lol! cute picture of your girls!

    know that if you want to "rant" on this blog, the least we can do is listen :) sometimes it's ok to blow off steam! as mother theresa said ""I know God will not give me anything I can't handle. I just wish that He didn't trust me so much."

    praying for sweet bella, ang, ali, and you!

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

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  31. Miss Bella & Miss Ali,
    What a totally awesome, wonderful SISTER picture that was! I just LOVE that big loving smooch!

    I also love the very silly picture of your very silly daddy jumping in the leaves (us east coasters really love leaves)! Ali looks like you really enjoyed the leaves too!

    I am praying nonstop for more days of slow and steady recovery. Go Bella Go! Go Bella Go!

    Tina in NJ

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  32. Rant away Tim,you have lots of "shoulders to cry on" out here... You face each day with so much grace, I am honored to be a part of the community that helps you vent.

    A story: My daughter Lea and 9 month old granddaughter Amaya left for California this morning, and I was feeling a little sad. They will only be away for a week, but I usually watch Amaya during the week, and I knew my days would be empty without her bright little self! I said a prayer for their safe flight, and then thought of Bella. I began my prayer for her, which started with: please, a healing for Bella...and then a voice cut me off, saying "Bella is healed". Do not believe because you can see it...see it because you believe it. What if our entire blog community pictures Bella healed...?? Blessings Bella, beautiful baby girl!

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  33. Just here checking on Bella.

    Go Bella Go!

    Still Praying!

    Team Bella
    Becky (Texas)

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  34. REMEMBER THE MUSIC-IT'S your own song!

    Hey Tim, I got half way through the top of your post for today and had to take a break for obvious reasons.
    I just wanted to write and ask you to take time to remember your music.
    I'm remembering a post you wrote from June or July, I think about the time on the lake when you say you went and sat at the end of the pier and played your flute at sunset. I'm also remembering the time you were in my husband's room playing in the background the day he left us to be with God. That music still is with me today. I can only imagine how beautiful the music on that lake must've sounded like and how you must've felt while playing it.
    SOOTHING in my mind's ears. I pray that it is now resonating in yours and as you continue to journal and face your days you take time in your walks, on your way to Bella's room to remember the music Tim.

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  35. Thinking of you guys and praying hard for your family.

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  36. Lynne, Bob, Jack and BenOctober 8, 2010 at 5:12 PM

    "Promise me you'll remember....you're BRAVER than you think, and STRONGER then you seem, and SMARTER than you think." Christopher Robin to Pooh

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