Tuesday, June 26, 2012

A Day in the Life

**So many of you have asked for a mailing address for Lucy.  I can't tell you how much that means to us.  There are some really awesome people in this world (and Atlanta.)  I hope you will understand that we can't give out a local address.  We just don't have the space in this small room for much more than our clothes!  The other problem is that we just won't be able to transport anything more than what we came with back home.  Thanks again for loving our baby girl and our family.  If there is something you want to send, please feel free to send it to the address on our blog.  I can assure you that Lucy will get anything that is sent to her!

**I also want to say a huge "thank you" to everyone who has sent me an email or a blog comment offering meals, help, etc.  Right now we are just trying to find our groove here as a trio.  Please don't be offended if I don't respond personally to you and take you up on your request, but as you will read below our days are very busy and very emotionally taxing.  What we need most are your prayers.  
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Today's schedule is fairly typical for a day here on the Rehab floor:

8-8:30        Occupational Therapy
10-10:30    Speech Therapy
10:30-11    Occupational Therapy
11-11:30    Child Life Therapy
11:30-12    Physical Therapy
1:30-2        Speech Therapy
2-2:30        Recreational Therapy 
3-3:30        Physical Therapy

Some days she has music therapy.  That is a favorite of Lucy's already.  Yesterday was a great day.  She pushed through with such determination and pride.  I was shocked to be real honest.  It was probably the hardest day she has had (physically and mentally) in 16 months.  This morning, its been a different story.  She's done well, but it is obvious that she is tired.  She's struggled more in Speech and her walking legs haven't cooperated as much as they did yesterday.

It's hard not to be discouraged as we watch the decline from yesterday.  Erik and I both have gotten a healthy dose of reality today.  Lucy has a long way to go, but that's why we are here.  We just have to keep reminding ourselves of that.  Trying to understand how much of Lucy's struggles are her recovering from the past few weeks' events or what might be permanent is the hard part.  I have had a few hard days recently.  Getting a bigger picture understanding of what Lucy will have to fight is part of why we are here in Atlanta.  It's hard watching your baby struggle.  Its not a comfortable place in which to live.

My friend Amber came to visit tonight and it was so nice seeing a familiar face. (and a big thank you to Erik's  friends the Boeschens for bringing us dinner.)  Amber is a Speech and Language Pathologist here at CHOA and I felt comfortable telling her about some of Lucy's challenges today.  As we talked, Erik and I tried to walk her through the events of the past few weeks.  I could tell that she was very stunned by how far Lucy has come taking into account where she was 3 weeks ago.  She told me that I had not written some of the details I shared with her.  What I apparently failed to mention over the past few weeks was that Lucy had an EEG that declared her almost brain dead on June 5th.  We had instated a DNR that banned any and all life saving measures.  We knew our baby was dying and we had begun to accept it.  We were planning for it.  We told Ella that her sister would soon go to be with Jesus.

In a meeting with Dr. C and Dr. W (two amazing doctors) we talked about what Lucy's future held.  We all agreed that a Lazarus moment would be the only thing that would save Lucy's life.  A few days after that meeting I sent Dr. W a text that only said "we have had our Lazarus moment."  It was the most poignant sentence I have ever written.  It was amazing.  I have no doubt that God has heard the prayers of many and chose to shine his grace on our child.  Almost brain dead.  That's what we were told.

Today was hard, but nothing will ever compare to the 5 days that we spent watching our daughter die.  Today was a gift.  As hard as it was, today was nothing short of a miracle.  Thank you God.  Thank you doctors.  Thank you nurses.  Today was a gift.


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76 comments:

  1. Michelle in AustraliaJune 26, 2012 at 10:42 PM

    We will keep up the prayers. For all of your family.

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  2. Sounds like a very busy day! Praying and praying for you guys often.

    Keep working hard Lucy, you are doing amazing!
    <><

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  3. Keep going Lucy!! We love you and your family.

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  4. Prayers are sent multiple times everyday for Lucy to continue her hard work and determination! Lucy you have inspired me and helped my relationship with God flourish and it's all thanks to you! I know I may never meet you, but I am eternally grateful to have stumbled upon your family's blog and read your life story learning about your up and downs and ALL of you miraculous experiences! Thank you Krull family and will continue to pray for your baby girl's recovery! <3

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  5. never give up on god kate this could be a test for you and erik i feel so bad for you and your family but lil lucy is a fighter always thinking about ella,lucy,and lil jack,you and eric.prayers for you all <3

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  6. The music therapy was our favorite part too!! Corey is awesome!!

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  7. Praying for a better day tomorrow. Lucy can do this, and so can y'all. Your strength and determination continue to amaze us all.

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  8. Praying for Lucy and your family always. Go Lucy Go! She is an amazing little girl that has an amazing family!

    Traci and Emerson

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  9. Your post left me speechless....but not wordless. WOW!!! I cannot believe Lucy was deemed brain dead but I do understand why you didn't share it. Such incredible pain!!! I have to agree...Lucy herself is a miracle. I am SURE God has H-U-G-E Plans for your little girl and I for one feel blessed to be able to witness them through your words and photo's....Talk about a GIFT!!!! THANK YOU KATE!!!! As always, we will continue to pray for Lucy! She will have something from us when she gets home...actually, I suspect it's there already. Any idea how long you guys will be at CHOA? I think it's amazing both you and Erik can be there together with Lucy. Not every family is as lucky! Praise God your family is!!!

    Thanks again for the update.
    Thinking of & Praying for you all continuously!!
    Jenn & Family xoxo

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  10. Im loving you all from afar. praying for you daily and keeping up from the sidelines. Im not sure how I found your sweet family but your strengths has ignited something in me I didnt know was there. Power of a praying Mama I guess.

    I just wanted you to know that you are doing such a wonderful job. Lucy is very lucky to have such prayer seeking folks. God is so good....always remember that....even when you want to chuck a shoe at Him or scream in tantrum. He understands. He weeps with us.

    Heres to tiny steps in the healing direction tomorrow.
    All my love, Jenny

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  11. Lucy may have limitations but she is alive and thriving and I am just thrilled. I think of her everyday and am grateful for the progress she is making each day. Thank you for sharing everyday. it means so much to all of us who have come to love Lucy and her family.

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  12. Lifting all of you in prayer tonight! Wow---what a story Lucy has---what a mighty God we serve!! :) Hugs to you as you adjust to the new city and your new home away from home...

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  13. Go Lucy Go!! And watch out because our God is an amazing God.. He is clearly showing this with her!! Many more prayers headed your way!!

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  14. Im so glad that Lucy is doing good. God is doing amazing things with Lucy and I pray that she will continue to improve and that your sweet family will soon be back together again.

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  15. Praying for strength for Lucy, and the whole family! God has blown me away with these miracles! Praise the Lord! --- Jessica

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  16. Lucy is truly a miracle and an inspirations. Prayers are never ceasing from our family. Even while on vacation, I couldn't wait to get the kids in bed so I could rush to the computer and check for an update. Go, Lucy! Go! <3

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  17. Praying. May God bless you all and keep you safe and in his care. Praying for Lucy's rehab, that she will be made strong, well, and whole. "When we are weak, He is strong."

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  18. Kate, I am a new follower to your blog. I have been praying for Lucy. Praying that God would strengthen her each and every day and bring completely healing and restoration to her body. Praying of for you, your husband and family, for peace and endurance!

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  19. Lucy is a miracle....is there any other explanation?

    I've often said (as we all have at one tome or another) that God will not put more on us than we can bare...and that God must know I am stronger than I give myself credit for. HOWEVER, I had no idea of strength and true love until I read your blog - seeing your unconditional love, pain, and strength...TRUE strength! God knows you are strong!! We all know that you are strong! Even though I am sure you do not want to be the strong one at all times and that breaking down feels is needed at times. Lucy has your strength as well!

    As I sit here and think about how often others mention sending things to Lucy, it really burdened me and I hope that Ella gets things too. I have not sent anything but prayers up to God. Jack is so small that he would not remember, but Ella is going through a lot too. And what about you? Do you want magazines (you could leave out in the waiting areas for other families) or maybe even a gift card to go buy something? Just my thoughts.

    I pray for continued progress, strength and endurance for Lucy. I pray for strength, peace and continued love for you and Erik. I pray that Lucy is healed. I pray that Ella somehow understands and finds comfort until you all can be together again as a family!

    Much love,
    Rebecca

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  20. Love to Lucy and y'all! Always praying, and always amazed at God's amazing power and grace! GO LUCY GO!

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  21. Wonderful news! May you continue to share news to renewal and strength! Much love!

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  22. Kate and Erik, I just have to say that my heart aches for you all. I hurt every time I read a new post. I have a very hard time trying to figure out how anyone should have to go through what your family is going through. It is so unfair. Lucy's had to endure more pain and suffering than any little girl should have to go through and I don't believe any parent should ever have to see their child suffer like this.(or at all for that matter). I just wish daily that there was something that I could do for you all, as I am sure many other blogging friends feel the same way. This post just makes it even more real as to what you are all dealing with every minute and what you have already had to go through and it is just so so unfair. My heart is aching for you all. Tammie

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  23. "Lucy had an EEG that declared her almost brain dead." I read that and uttered, "Oh my God." Stopped me cold. And then I read the rest of your post. Your baby truly is a miracle (not like I need to tell you that). Our bodies are miracles, too. That little part of Lucy's brain that was still going and her strength (at six years old!) pulled her through. Oh yes, and countless prayers. Those prayers continue from Elgin, IL.

    You brought her to the right place. Baby steps - each one is important. Take care and God bless you all.

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  24. I will definitely continue to pray for Lucy and your family.

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  25. The last few weeks must feel like a complete whirl wind. Hang in there! We're all still praying. I am thankful for the friends you have in Atlants and hope you find the support and encouragement you need to make it through the next few weeks.

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  26. Thanking Jesus for all he is orchestrating in your lives. God Bless!
    Sending lots of prayers from Blacksburg, SC.

    *God is Good*

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  27. What a busy schedule for a little girl. When she gets through all this I doubt anything will faze her. We are all still praying for her; the power of so many people's love is an incredible force. Lily. xxx

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  28. Huge hugs to all of you...from a grandma in Iowa. HUGE huge prayers are coming your way. One of my daughters has an Ella, Lucy and Jimmy. I can't even BEGIN to imagine what you are going through. People are following your blog and holding their breaths each day waiting for more good news. God bless you all!

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  29. Many continued prayers for you & your precious family.

    Amy

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  30. Thanks be to God!
    xoxo

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  31. It's incredible what all has happened over the past month. Praying that Lucy continues to make such improvements!

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  32. I think Lucy was perhaps trying too hard that first day and so just couldn't keep that much energy yesterday. However, my opinion is if she can just find a steady pace that she can keep going at, it will increase as she moves along. We continue to travel with you in prayer.

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  33. Praying that your family has many more gifts from Him, and perhaps another miracle is in store too.
    Praise His Holy Name!

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  34. I'm without words (that is hard for some to believe) but all I can say it Praise GOD!!!!!

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  35. All I can think is Praise the good Lord Almighty! My prayers are constant. My love for someone I have never met continues to amaze me. Go Lucy Go! You CAN do it. We are all praying you through it. Thanks for keeping us updated. Praise God from whom ALL blessings flow.

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  36. Many Many prayers being sent to the three of you (Lucy, Kate & Erik), the doctors that are treating Lucy and your family back home. I check daily to see if there are any UPDATES on Lucy and I will continue to keep you all in my thoughts and prayers.

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  37. Oh Kate! We are continuing to pray without ceasing for your precious Lucy and the rest of your family. We are constantly praising God for his miracle of her and where she is today.
    Thank you for letting us walk this journey with you and Erik. It is our JOY to be able to walk with you all and lift your family up numerous times a day.
    My prayer is that you feel God's presence minute by minute and see Him in your babies eyes.

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  38. Tearing up at my desk reading this. My heart is so full just realizing how God answered our prayers for your Lucy!

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  39. Myself and Church family continue to pray for sweet Lucy. This week we had VBS and the theme is Sky- and our main quote we have taught the children is "Trust in God". We have learned that anything is possible if you turst in God, and I have thought about your family as we have learned our lessons and sang the songs in music time. I am so glad that God's big plan for Lucy is not finished yet and I cannot wait to see what amazing things her future holds. God is Great all the time!!! Love in Christ.

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  40. I literally had chill bumps all over my entire body reading the second part of that post. A miracle indeed!

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  41. Continued prayers and thanking God for his miracles.

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  42. I am truly amazed at your whole family and the willingness to share your blog. It is almost like I have known you guys forever.I am friends of Pastor Tony Elam and Christie and we have been praying for "Little Lucy" as we have called her.Thank you for making the time in your day to share your blog to keep us all posted, much loved by the whole world.
    Our God is a mighty God!
    Johnnie

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  43. Lucy is most definitely a precious miracle. My thoughts and prayers are with each one of you constantly!!

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  44. Lucy = Hope!!!

    Keep fighting, Lucy!!! Lots of prayers & positive thoughts from Florida!!!

    Kate & Erik = AMAZING

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  45. Praise God for the privilege of "witnessing" these miracles through your blog! Thank you for sharing Lucy's story.

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  46. I honestly believe that EVERY day you and Erik get with Lucy is a gift. She is so special and has captured the hearts and love of so many strangers from all over! She is God's work. He is teaching so many of us through her smiles and her struggles. Lucy is a miracle. The prayers from Kansas will continue. I tell someone knew about Lucy and her journey every day and ask them to pray for her! The prayers are working! Lucy's brain is working. I would be exhausted if I had Lucy's schedule, don't get discouraged if she struggles after a long hard day.
    Go Lucy Go!

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  47. Thank you so very much, for sharing Lucy's life and your lives with all of us. I pray for ya'll daily, sometimes several times a day. You are constantly on my mind. As I nurse, I have seen what I would call small miracles several times a year, but nothing that would shake my faith as Lucy's miracle has. I am completely in awe of God's awesomeness shown in you life's journey. I continue to pray for small miracles everyday. I think he is showing those in every small step she takes. Thank you God for introducing me to this amazing Christian family. It is just what I needed to move me forward on my own spiritual journey. I can only hope that in some way my life can impact others they way Lucy has. GO LUCY GO!!!!!!

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  48. Our strength comes from the Lord! He has given Lucy her "Lazarus moment" and His hand will remain on her...and all of you as you finish this race! I believe that God will continue to restore Lucy! There will be good days and bad days in rehab, but as Lucy gets stronger, the good days will begin to outnumber the bad days...a marathon rather than a sprint. ALL things are possible with God, and if God is for us, who can be against us?! I think I am beginning to get used to getting chill bumps when I read your blog...that's one incredible girl God gave you!! Y'all are in my constant prayers for continued restoration, strength, patience, peace, and for all of you to be together again very soon!!
    Shay

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  49. We had praised God for his miracle before we even knew how big of a miracle it was!! Praying daily for your miracle, and praying for the rest of your family. I wear my "Go Lucy Go" t-shirt as a badge of honor and I tell her story often.

    Praying in Cali.

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  50. Praying for you and your family! I probably will never meet you all, but I love Lucy!!! She is a true fighter and a great testimony to how great our God truly is! May God continue to bless Lucy and her family....Keeping you all in my prayers....

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  51. Push on, sweet Lucy! That's a pretty full day and her achievement is so awesome. As ever, my prayers for Lucy and all of you, in Atlanta and at home.

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  52. So sorry for all your struggles. We will continue to pray for your beautiful family.

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  53. Kate and Erik, we are not far away like so many of your blog followers, since we're right here in Covington, but our prayers have been sent your way all of this past year. I am amazed at God's work in your life. We often ask ourselves what our purpose on Earth is, but I am sure that little Lucy has reached far more people than any evangelist can claim.
    I witnessed Ella in her triathlon victory earlier this month, and I stand astonished at this continuing marathon that Lucy is facing. All three of our kids are following your obstacles on this blog, praising God at Lucy's little victories and weeping with me at the lows when we thought Lucy was leaving us.
    Please feel the love coming from our end of TIpton County.

    May God continue to bless you.
    James, Michelle, Harrison, Christopher, and Sarah Daniels

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  54. I don't know what I can say that others haven't already said, but I want you to know that I am praying every day for Lucy and for your whole family to be restored. Lucy is such a miracle and every time I read your blog I see the hand of GOD on your family. My heart aches for you all, and I often leave your blog in tears after reading. However, there is so much hope and faith surrounding your family that I just lift you all up in prayer every day and know that our Amazing Father is a God of mercy and love who is holding you in his arms every moment. I pray for peace and healing for sweet Lucy and while I know it is of no consolation, I want you to know that Lucy's struggle makes me cherrish every moment with my own children even more because I know it could all change in an instant. I'm praying for you all, thinking of you, and sending you love. I pray lucy's strength grows one day at a time and that our Father will restore her to full health in his own perfect timing.

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  55. As I posted previously, I have had 3 friends' children be in the rehab program at CHOA in the last 5 years. All 3 kids were as close or closer to death than Lucy at some point. Two of the children are back in school at their grade level, keeping up with their peers, fully recovered. If you saw them, you would never know that a couple of years ago, they could not walk, barely talked, etc. when they reached rehab after months in CHOA in ICU and on other floors. One child is still working through her challenges. She will get where she needs to be but her progress is slower. Her family expected huge miracles from rehab, and especially from God. Her family focuses a lot on the frustrations of their situation. I know this sweet child senses her parents' feelings. I would bet it is a reason why her progress has been slower The other two families focused on the hard work of taking thousands of baby steps to get where their children are now. They constantly praised God for the tiny baby steps taken forward. While they were naturally sad at the inevitable steps backward, they chose to focus more strongly on whatever it took to get that next baby step forward.

    Please never think of any of Lucy's challenges as being permanent. She has shown she can do anything. Believe in her. You must cherish and celebrate every single baby step forward, and know that there will be some backward steps. Be Lucy's greatest cheerleader. Stay positive. Pity parties are ok occasionally but you must get back quickly to cheering on Lucy. She's the one doing all the hard work.

    Within 10 minutes of CHOA, you have every retail store you could need, dozens and dozens of restaurants, and some of the best doctors in the world. If you would like to speak with a counselor for yourself, CHOA will help arrange it. If you need anything, just ask for it.

    Prayers up for Lucy and you. To infinity and beyond...

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  56. Praying for STRENGTH in every sense of the word, for all of you. Thank you so much for updating us on your family.

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  57. The Hanks FamilyJune 27, 2012 at 1:46 PM

    Thank you for sharing with all of us following Lucy's amazing and painful journey. As a parent and grandparent I cannot begin to fathom the pain you all must feel. Thank you for opening up to all of us who are diligently praying and seeing God answer these prayers means so much! Whatever the future hold you know Who holds the future and what a blessing! Prayers for continued strength and healing for Lucy and for strength and comfort that only God can give for you, Erik and the rest of your wonderful family. Praying without ceasing!

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  58. Everyday is filled with gifts and miracles! Lucy is a beautiful example and a wonderful gift to this world. Thank you for opening up and sharing your story and miracles with us. I will never stop praying for the greatest miracle of all...full and complete healing and a long life filled with happiness for Lucy! This world needs her! Praying for these long days to be productive and successful and not too overwhelming for you and Erik and that Ella and Jack will know how much you and Erik love and miss them while you are helping Lucy to recover. You are an inspiration and Lucy is living proof of miracles and God's work on earth. Praying...

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  59. “Don't give up before the miracle happens.” – Fannie Flagg

    Praying, Praying, Praying. Go Lucy GO!

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  60. OMG- what a testimony ! I got chills and cried while reading this ! Thanks you for sharing ...

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  61. I have chills everytime i read your posts..I catch myself waking up in the middle of the night, looking at my internet on my phone to see if their is another blog update from you! YOU, your family and especially sweet Lucy are an inspiration to all!
    God has special plans for Lucy and we all know that! Lucy has touched so many lives, it is just amazing!
    God Bless your special family who feels like family to all of us now!
    Praying for Lucy to get stronger each day, praying for you and Erik to remain strong and praying that Lucy will be home playing with her brother and sister real soon!!!!
    Kelly Klenk

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  62. Kate-our prayers continue daily for little Lucy and your family. You have indeed been through such horror and pain--and have seen a miracle with Lucy. After induring those five days and now seeing how Lucy has to struggle and work so hard--small steps are indeed a miraculous gift. I am praying and praying for your little girl to respond to all the therapy and hard work she is doing. How strong this little angel is! Blessings to you all.....

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  63. I want to send a huge virtual hug to Ella! Having two sisters of my own who mean the world to me, I could not even imagine what it must have been like for her to hear that her baby sister was going to "be with Jesus soon." She is no doubt rejoicing at the miraculous turn of events! Still, just like for you and Erik, those days will be remembered for the rest of her life. Speaking from personal experience having once been on her end, you were wise to prepare her given the way things were looking at the time. She's probably even more the cheerleader of Lucy now than ever, even if it means she has to be away from her Mama for sometime. You are such a loving and caring mother...and father! Your spiritual influence and positive outlook will serve them well in life. Even at only five years of parenting Lucy, look at what a champion she has proven herself to be! Despite the peaks and valleys this therapy will inevitably produce, I pray everyone will see the big picture clearly and that progression upward will continue!

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  64. Go Lucy!!!! You and your family are in my prayers every day!

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  65. Whew! I think ANYone would be tired after that grueling therapy schedule. We're praying that Lucy develops enough strength to get through the daily grind so that she can come home again! You and Erik are such great parents, and I know she appreciates everything you've done for her, and I'm sure she misses everyone back home. Keep praying and everything else that you've been doing, 'cause she needs you now more than ever. God has his hands on her, and I know he has GREAT things in store for little Lucy. GO LUCY GO!!!!!!!!!!!!!!!!!

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  66. Go Lucy Go. I've been getting chills reading you recent updates, Kate. Praying for your family....To infinity and beyond.............

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  67. OH Lucy is such a miracle! I am amazed at reading what is going on with how far she has come. Do you need money? I am sure this is financially draining! We would love to help and we would love to know where we can send money.
    Thank you for sharing Lucy with the world and we are praying for you!

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  68. Praying for strength for Lucy!!! Hang in there sweet girl... you've got so many people rooting and praying for you!! :) If my son(he's 2 yrs. old!) sees the computer, he asks me... "Lucy ok?" Because I've told him when I have the computer... I'm checking on little Lucy!! Just thought I'd share - Lucy even has little peeps thinking of her! :)

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  69. Wow. We do serve an awesome God, and these last few weeks have been nothing short of a miracle! My heart aches for the roller coaster of emotion you are experiencing. Being thankful for God's gift of Lucy's sweet life doesn't make your current struggle any less difficult. What an awesome thing to have so many people united in prayer for your family. I'm honored to be one of them! I will continue to pray for your time in Atlanta, Ella and Jack at home and Lucy's continued recovery. Lots of ove to your precious family!

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  70. u dnt kno us,but our fmily has been reading u story and keepin up with ur updates on Lucy, we pray that God will reach down and heal her she can back home with her family. Wat is Ms. Lucy in to, wat does she like? Prayn for ur family. The Downing Family

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  71. It warms my heart to hear of God's gift to you. God will continue to give you many gifts! Praying for your family! Lucy is a strong little girl! Praying!!!

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  72. I have tears rolling down my cheek. You have been through so much I am amazed by your strength. God will be so pleased one day to say well done good and faithful servant. In all this you have shown your strong faith and trust in God's plan. Not an easy thing for anyone to do and you have done it well. I will continue to pray for complete healing for Lucy and strength for her in these coming days and weeks(and for moon and dad too.)

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  73. I am praying for sweet Lucy. She is always in my prayers.

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  74. Deborah R, Grenada, MSJune 28, 2012 at 11:47 PM

    Praise God for what He's done for Lucy. Continuing to pray for a full recovery!

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  75. I have been convicted lately that out of the thousands of blessings every day, I allow myself to be bogged down with one or two petty annoyances, annoying people, etc, in a day. Part of the reason for my conviction is the blessing of Lucy. Thank you so much for reminding me that God's blessings outweigh my petty annoyances by more than I could ever measure or tell, and that His love is overflowing to us. Thank you for being a reminder to me that the things that are hardest bring the greatest rewards.

    Love to Lucy and your wonderful family <3
    Susan Phillips in Michigan

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