7.17.2012

Update for Today

I am going to do something I have never done before and that's show a picture of Lucy's incision.  It's not for shock value, but rather to clear up any misconceptions that this wasn't a big surgery.  Please understand that Lucy has had major surgery and your prayers are still needed and very appreciated.  She has a lot of recovering to do and we still have a long time to wait on pathology.  I fear that just because I choose to talk a lot about the positive things in our lives, even the people who are the closest to us loose sight of the big picture.  The road to recovery has been and will be long and hard for Lucy.  Please never stop praying.  


Today Lucy woke up feeling great.  Once again, another miracle in and of itself.  You see her head above.  How in the world she went all day without pain medicine blows my mind.  Well, actually she had pain regular Tylenol after PT/OT.  I would have too if I had worked as hard as Lucy.  She had walked an entire lap around the 7th floor by 11:00 this morning.  Amazing!


Here are three videos from today's PT and OT sessions.  All I can say is that Lucy is one tough little girl and God is very good:

http://youtu.be/-02pmZ4UjLA

http://youtu.be/94UICkm4Rl8

 http://youtu.be/qChXB653NxM


Lucy gets to wear Ms. Lauren or Ms. Amanda's badge walking to the gym.  She can swipe the badge to open the door, but she's convinced she has to say "Open Says Me" before the door really opens.  It's so cute!

I have several things weighing heavy on me tonight.  You would be surprised to learn that waiting on the biopsy results is actually low on the list.  I guess that 18 months of hell will do that to you.  I am ready to know, but I'm not anxious.  I am grateful for this peace that God has granted me concerning this issue.  Honestly, if it is cancer and the doctors think she's strong enough for Chemo, then we will start immediately.  If its not cancer, we have other fish to fry when it comes to school and rehab.  So, either way, Lucy still has a life to live and hopefully its a very long one.  My job is to figure out how to help her live it the best I can.  My job is NOT to sit around and stop living for a week or two while I wait on pathology.   It's amazing how at peace I am with it all.

What's weighing heavy is rehabilitation once we leave the hospital this week.  There's still the issue of insurance and not having pediatric services in our home town makes the scenario even cloudier.  I will be approaching LeBonheur tomorrow morning, trying to get Lucy in their outpatient rehab.  The program is nothing like the school readiness program we are missing in Atlanta, but it could possibly be a good bit of therapy a few times a week.  It will be a miracle if we get approved but I think it would do wonders for Lucy.  School starts in 3 weeks and I am very nervous about sending her without some intensive therapy.

School....that's a whole other concern.  How in the world do I send her all day every day (without me??)  I'm not sure I can mentally and emotionally, but I'm also not sure that I can physically.  And by physically I mean that I don't know that she won't need my help in many areas of school.  Yes, I am overprotective.  But I also can't leave my baby girl if she's not physically able to maneuver school alone.  This is another huge hurdle that has to be crossed.  I am praying fervently that God would make clear this plan.



The lady above is our dear "aunt" Tracy.  She's Dr. B's right hand woman and the Director of the Brain Tumor Program here at LeBonheur.  That means that she handles all the back and forth between here and St. Jude, along with a million other job duties.  Tracy has become like our family and we love her to pieces.  I honestly can say I couldn't make it without her.  Love you Tracy!!  Today Tracy introduced me to the Hays family from Mississippi.  Please pray for their 6 year old son who has a brain tumor.  Thankfully it does not appear to be malignant, but he has a massive tumor that will have to be removed via a long open brain surgery on Thursday.  I had the opportunity to sit down and talk with them for a long time today.  As a couple they reminded me of my sweet friends Kristie and Jerry.  There are so many similarities between the parents and their little boys.  It was very bittersweet as I thought about meeting Justin's family in the same spot (the family room) almost 18 months ago.  I miss my friends so much and I still mourn for their loss.  The memories of both Lanie and Justin haunt me when we are here.  I'll never understand.......

We ended the night on a good note with a surprise visit from our friend the Smiths.  Lucy nearly jumped out of bed when PK walked in!  It thrilled my soul to see her so excited.


There was also a visit from two very special children as well.  Its hard to be sad about life when these three make up the best part of mine (plus their daddy)!



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95 comments:

  1. Another amazing day for Lucy - she looks great! What a trooper. Your sense of peace and calmness is God's warmth surrounding you, as He is Lucy's Father and is by her side always...you should feel that comfort! You're a wonderful Mom with the right perspective and we'll all be praying for clarity on your upcoming decisions about school and therapy.

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  2. go lucy go you are the strongest lil girl i ever seen you go lil one prayers for you yall kate.....tennessee

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  3. Juaacklyn CunninghamJuly 17, 2012 at 11:51 PM

    I am so impressed! Lucy did great with OT/PT. She has come so far and through so much. I've said it before that smile is priceless. Jack and Ella look so happy. I will continue to pray for no pain for Lucy (that is an amazing incision), a healed and strengthen body and peace for the Krull family as you await pathology. Go Lucy Go! Prayers for the Hays family and medical team.

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  4. Lucy is absolutely amazing! It's hard to believe she had major surgery yesterday-she is so strong. I pray for Lucy many times a day.

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  5. WOW!!!!!! thats awesome hahaha jack makes me laugh and ella is the bestest big sister

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  6. She sure is one tough cookie!!! :)

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  7. Way to go, Lucy! You are awesome! I'm praying for you, sweet girl...

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  8. What an incredibly amazing little girl!! I continue to pray for Sweet Lil' Lucy and your entire family as you face the unknown with such grace and dignity. I love the way you started your blog with the stark reality of your journey and ended with three of the sweetest little smiles I've ever seen. What a testiment to love and faith your children are learing by witnessing it in the lives of thier phenominal parents!!!!

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  9. Oh, bless her sweet heart! I'm so happy to see her smiling! Such a tough kiddo! Continuing to pray for Lucy and the rest of your family.

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  10. Poor, sweet girl. Seeing her head breaks my heart.

    Have you checked with your school district about services for Lucy? She might be entitled to a one on one assistant to help her through her school day.

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  11. Oh my goodness! The incision is huge! Lucy is absolutely AMAZING! There is no way I could stand on that wobbling board even on a good day, never mind the day after my skull had been cracked open. I am so surprised they had her doing so much movement today. As a teacher, those little wheely carts she was sitting on are tippy and worrisome at the best of times. That she was scooting around on so soon after surgery is unbelievable. You are right about miracles! Wow, I am in awe! Wish I could help you with the schooling. I'd love to work with sweet Lucy!

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  12. Many, many continued prayers for little Lucy. She is such a determined little girl! Love the sweet smile on her face in that last picture with her siblings!

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  13. Oh to see Lucy smiling, grinning ear to ear actually, tells me that she is on the road to recovery. It sounds like the program in Atlanta would be the best thing for her but you seem reluctant to return. It sounds like the decisions you need to make are hard ones. What would be best for Lucy?

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  14. Oh Kate! I will never, ever stop praying for Lucy!! I promise.

    All these questions will be answered in time and it will all work out. God will give you the grace you need in order to do what yo must.

    Praying and praying often.
    <><

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  15. Oh Kate! She is one tough little girl! What a smile. We will continue to pray for Lucy. I know you mentioned the insurance and rehabilitation issue, what about a fundraiser to raise funds so you can stay in the mid-south? I would be willing to help. Go Lucy Go!!!

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  16. Lucy is such an amazing little girl!!!

    I was thinking about what you had posted on sending her to school all day and I was just wondering if you have ever thought about home schooling her? I'm not sure what the laws are in your state but there are some really neat curriculum that the lesson plan is all layed out for you and everything is included in the package.

    These are two of my favorites http://www.mfwbooks.com/ and http://www.heartofdakota.com/

    There are tons more but those are just a great price and really easy to use.

    Here is a website you can read up on what you state requires (if anything).

    Thank you so much for the updates, I sure do love you sweet little girl even though I have never met her!

    Vanessa

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  17. praying hard for you all from Sydney!

    Nicole xxxxxxxxx

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  18. Oh Wow Kate she is one tough little girl. I sometimes think we as adults should take a few lessons from the little ones. What an awful incision that is. My heart still goes out to you all, I think sometimes people do not think of all the other things that you have to think about because we are just praying for Lucy's health and not really remembering that you have to keep up on her school work and so many other things. You are also such an inspiration to all who are having to go through similar things in their life. We are here for you. Thanks for the videos, It is amazing how fast she bounces back.

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  19. Oh, that sweet baby - it makes my heart hurt looking at her incision. It's amazing that she's been feeling so good in spite of it. Go Lucy Go!!!!

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  20. Kate...thanks for continuing to share your journey. It was good to see you yesterday and I would not have known that Lucy had been through surgery the day before. She looked great!! Praying for God's wisdom for you and Erik and that Jesus would continue to lead you sweetly.

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  21. Go, Lucy, Go!!!!! Tell Lucy she is the strongest girl I know!! Prayers continue from Elgin, Illinois. Kate, so glad your thoughts are peaceful about results. That is a gift. Praying specifically for good news on the therapy/rehap or whatever Lucy needs to get strong.

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  22. Lucy and indeed all of you are a lesson in the resilience of humans. I find it incredible that a little girl could go through all she has been through and still keep smiling and doing her crafts. Could you home school Lucy until she is stronger? We complain in the UK about our National Health System but when I read about you needing to pay for Lucy's rehab it makes me realise how very lucky we are here in the Uk to have services that are free to all. You are all in my thoughts. Lily. xxx

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  23. What a miracle child! I will never stop praying for Lucy and you and all your family. I can't say I understand but I can say I know the love of a mother and grandmother and we would move heaven and earth for our children. You are an amazing woman and I am confident God will pave the way for you and give you answers on the next steps of this journey. Thank you for sharing as it helps not only you but others also. Prayers for another good day for you all!

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  24. Praying fervently that Lucy's therapy is approved, even if it takes a miracle. God's in the miracle business!

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  25. Kate, I'm really not surprised Lucy's doing as well as she is. She's got the grace of God, the love and support of countless people, and she's got a Mom that's a power house.
    You are an excellent example of strength, wisdom and faith that she can see daily. You don't try to pretend to be superwoman.. you just do the very best you can for Lucy, and you're not too proud to admit you're not perfect. She can see that it's okay to ask for help. She's not giving up because her Mom's not giving up, either.
    Your family (gorgeous family!) will stay in my prayers.

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  26. Only God can do this! To see that sweet little girl battling so hard - you know God is with her and with you all. I will definitely keep praying. It just breaks my heart she continues this battle. I want it to be over for you all.

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  27. The peace that passes understanding..you have it and it is God's gift. You have so many gifts as we all do. I think you see yours more clearly and more often than most of us. I will never quit praying for sweet Lucy. She is magnification of God's presence in our lives. On the subject of school--having been in the business almost forty years, I know there are individual aides that are assigned to children with special needs. Have you looked at this possibilitiy? If it is not available in your area, are there close friends that could rotate with you to provide this, and would the system allow that to happen? (Surely, surely...) As far as you have travelled, these things will come together, whether by a stint of home schooling, special assistance from your school (system, local principal, teacher???), or as my mother used to say, "Pray, and there will be a way." Praying for you in so many ways. I love it when you bullet the points you need prayed for the most, but you gave us that today in your text. Amazing Lucy.

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  28. love how lucy is still being the big sister to jack...holding around his arm to keep that yummy boy from leaping into "Lord only knows what or where" with busy boys you never know!!!! praising God for the peace He is providing in abundance to you....what a blessing that PEACE is!!! always praying, always believing!! bettie..Col. 3:17

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  29. Thanks for the update, for sharing your story with us. You have a real gift for writing, Kate! I continue to keep Lucy and your family in my prayers.

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  30. Praying for you all, Kate. If you'd like to consider homeschooling please give me a call and I can help you with a little info. We use a great curriculum which is easy to organize and use.

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  31. The last pictures just makes my heart smile... And Jack is just hilarious! I am sure he helps to keep the mood pretty light in such a time as this! Continued prayers for your family and Lucy's rehabilitation..

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  32. Lucy just amazes me and YES she is a tough cookie!! Kate we will never stop praying for Lucy and your family. GO LUCY GO!!
    Praying in Florida!!

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  33. I love that Lucy is holding onto her brother in the last picture. Making sure he is safe. What a wonderful site. Go Lucy Go - Love the youtube videos. She is so strong. Praying for you all.

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  34. Will not stop praying!! Lucy is such a trooper!!!

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  35. I love how Lucy is holding onto Jack in the last picture. She is so sweet and such a good big sister. This is my first time commenting but I just wanted say I am praying for Lucy. She has had to go through more than most adults at such a young age. I pray that as she grows up she looks back on her childhood with nothing but amazing memories - because that is what it will be to her just memories. I pray she will fight this and l live a long happy life!

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  36. Have you thought about homeschooling her? I homeschool my children and I am so glad I do because my oldest has some learning disabilities and I know she would struggle in a regular school setting.

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  37. So glad she is feeling great and praying for biopsy results with NO CANCER. I think if this were my child, even though I always said I probably couldn't handle doing it, I'd home school her for a year, just so I could be with her, help her catch up, and make sure she is ready for it all.

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  38. Oh, Kate. I am so moved by the photo of Lucy's incision. Most adults would not be handling that and the associated pain as well as Lucy seems to be. She is brave and strong. She has been in marathon for a very long time. I am sorry to hear that some people don't feel this is/was major surgery. In my book ANY surgery is a big deal. It takes so much out of a person and then there is the recovery. Brain surgery is a whole different level of serious. I pray that those who don't "get it" will have their eyes opened and try to understand a little of what Lucy is facing. I am amazed at what Lucy can already do.

    As far as school....I've been teaching for 25 years...and in Wisconsin we'd have an IEP - Individualized Education Plan - written for Lucy. You have to request a special education evaluation for her. A team will meet and decide what is all needed to help Lucy be successful at school. That could include a full time or part time aide, assistive devices to help her walk and move throughout school, laptop or other technology aides, special chair to sit in, special pencils to use, etc.....to modified curriculum. The school also has the responsibility to provide, at their cost, a teacher/tutor to come and deliver instruction in your home to Lucy if that is what is deemed most appropriate. It all comes down to what is most appropriate and least restrictive for Lucy's learning. Federal law guarantees her this no matter what state you live in. Please contact your local public school system and talk about an evaluation and an IEP for Lucy. She can have a great team of educators working with her just as she has a great team of medical personnel. And, there should be NO cost to you for the education portion. Feel free to email me with any questions.
    I recognize that this may not be something you are able to or wish to tackle at this moment....but just some information to store for when you do need it. I would agree with you that sending her to school, without you or any other assistance or IEP in place, in just a few weeks would likely not be in Lucy's best interest. I am praying that you have a receptive and understanding school district to help Lucy. And, as always, YOU are her greatest advocate.

    Prayers for Lucy continue from my family to yours every single day. And, you can be assured that they will. May God wrap you all in HIS care and continue HIS healing of Lucy. Hugs to you!

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  39. wtg lucy!!!!i am so happy and so proud of you!!!you are an inspiration!!

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  40. WOW!! all I can say is wow! What an amazing little girl (and family) you have. I never expected to see Lucy doing the things she was doing and looking so strong and healthy. The prayers never stop for this little girl. Keep it up Lucy!!

    GO LUCY GO!

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  41. What an amazing little girl!! Prayers for answers to all of your concerns right now. Have you checked with the school itself to see what kind of extra help and support they can give to Lucy? I think the school will step up and make accomadations for her, at least ours does. Something worth looking into maybe?

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  42. What a beautiful bunch of kiddos! I just noticed Ella's braces are gone...WOW! She is really changing & starting to blossom into a beautiful young lady (and I am sure it's killing you & Erik, LOL) and Lucy's hair is getting so long! And Jack is growing like a weed! He's gonna be as big as the girls before long. I am so sorry that it takes so long for those stinking biopsy results. But you are doing right and LIVING. Still praying. I pray every day for all of you.

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  43. Praying for y'all. Lucy smiles is contagious. She is so tough and strong as is your whole family. I couldn't help but think of Isaiah 40:31: "But those who trust in the LORD will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint." It is so clear that your family's strength is from the Lord. Praying that Lucy will not grow weary or faint.

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  44. I continue to be awed by Lucy's strength, and by your strength, too, Kate. Lucy certainly has got a lot of prayers on her side! It's amazing to think that she's up and it so soon after brain surgery! Everyone wants what's best for her, of course. With PT and school, I have a feeling that you will be guided toward great choices that will fit well for your family. What warriors you all are! And how wonderful that you're able to share comfort with another family of a seriously ill child. In such challenging circumstances, you all keep shining in ways that touch countless hearts. Go Lucy, go!

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  45. as someone who had 4 brain surgeries & an abdominal surgery over the course of 2.5 years (2008-2011) i know the pain and it is DEFINITELY THE LORD who is giving her that relief!

    when you posted about how Lucy was about to die, and prayed for no suffering, mercy, etc., i couldn't help but believe that God wasn't done yet. of course He has used people after their death, but despite the blog posts sounding like you guys had zero hope, God whispered to me that, while Lucy may not grow old, she wasn't done yet. still, to see just how far she has come blows my mind... the word "miracle" is overused these days, but God certainly has performed a miracle in your little Lucy! i will continue to pray that this miracle is not just about giving you these extra weeks (which must seem like a huge blessing, every day you have had is a day you thought you wouldn't) but allowing her a full, long life here on earth before she goes Home.

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  46. Kate, Thank you for sharing your heart. I will pray that you will continue to have peace about the pathology report. I will also pray that you will have peace about the rehab and school decisions you are facing. I pray that God will bring someone to come alongside you in making those decisions. I'm thankful that in the midst of all you're going through, you are available for "divine appointments" such as speaking to, encouraging, and supporting other families. I will continue to pray for Lucy - her health, her strength, her stamina, her disposition, her recovery from the latest surgery. What a blessing she is. And I pray for you, Erik, Ella, Jack, and your extended family.

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  47. I pray for Lucy and your family every day. You are so blessed to have your faith in God.

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  48. Lucy is one unbelieveable little girl, filled with a level of grace, positivity and determination that most adults (myself included) could only hope to achieve. Thank you for sharing the photograph of her incision; I'm sure that was very difficult to do. Seeing that picture, followed by the pictures of a beautiful, smiling, hard-at-work Lucy, served as a beautiful reminder of God's miraculous grace. I've said it before, but when God created Lucy, knowing all that she would face and the countless lives she would touch through her struggles, He created a miraculous little fighter with endless courage. God made Lucy extra special, that's for sure. Thank you for sharing her with us and allowing us to continuously pray for Lucy and your family.

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  49. What a tough cookie! Lucy looks great and seeing her smile just warms my heart :). Continuing to pray for Lucy and the entire family!

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  50. I don't think anyone is forgetting the big picture, I think we're just cheering on each step in Lucy's journey! It is amazing the strength and will her little body has, after so much its gone through. As for the issue of schooling, I know you mentioned before homeschooling seemed daunting (though not nearly as daunting as all the things you've been through already!), but maybe you could approach it as 'take one day at a time' and homeschool (at Lucy's age, it only takes about 3 hours a day) with a possible agreement to slip her back into school when she's stronger.

    Always praying for you and your family!

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  51. Wow- Lucy is such a strong girl! Continuing to pray for her healing and your family. For school- could the school/district provide an aide for her at school? To help her with the physical things she may have trouble with?

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  52. Can you believe it is only Wed?! Whew...what a whirlwind wind week you guys are having! I am thrilled that Lucy had such a great day yesterday. Prayers will certainly continue. :) On the subject of school, I would suggest that you strongly consider requesting accommodations for Lucy. To do so, you will need to request an IEP (Individualized Education Plan) meeting with the school. If you need help navigating this process, I am offering to help as this is my background. Email me if you would like: higginsgilreath@yahoo.com

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  53. How darling little Lucy keeps amazing!! We keep our prayers lifted up for her recovery. We pray for a clean pathology report. We ask for Lucy's little body to be as strong as her heart. She is surely one extraordinary little girl blessed with an incredible family....

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  54. Once again it is so wonderful to see that smile touch her eyes! I love the last picture for sure! What a beautiful family you have Kate! You are so blessed. Continued prayers for sure!!

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  55. Forever your family and sweet Lucy will be in our hearts and in our prayers.

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  56. I'm amazed. I was sitting here with my mouth hanging open. The pictures show Lucy as full of life, smiling, happy and working hard. I know there is much more to the picture than that. I'm so grateful that Lucy is having such good days. I have to add that I wouldn't mind a butt scooter to roll around on!!!! I had back surgery in April and I've been going to PT. I think about Lucy the whole time I'm there. How much harder it must be for her. I'm praying with all my heart and soul. Love the pictures of the three siblings on the bed. Even after all you all have been through, you are mightly blessed. I pray you will continue to be blessed with healing, joy, love and strength. Love to all of you.

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  57. I think if we looked up the word strong and fighter in the dictionary, we'd find Lucy's name next to both (and Erik, Kate, Ella & Jack)! Lucy truly = HOPE! She's a rock star!!! Absolutely amazing!!!

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  58. Kate,
    Wow! What a precious child you have! She is such a shining light for all of us!
    We are praying according to all that you have ahead.

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  59. I'm still praying for all of you Kate. Just because Lucy seems to come through a lot of tough obstacles with flying colours doesn't mean that I take those tough obstacles as easy. Just a little reassurance (maybe?) from one reader that I know Lucy is on a tough road, but I also know (granted only from your blog), she is a tough little girl and you, the rest of your family, and God are helping her on it.

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  60. Dear Kate,
    I love and appreciate that you are 100% real on your blog, sharing all the moments along your journey - the good, the bad, & everything in between. I'm sorry if people have made you feel like the situation isn't as serious as it is just because you share the sweet, positive moments that you get to savor with your family and also all the progress your tough little girl is making each day. Your sitaution is still very real to me and I continue to pray for healing and miracles and answers to the questions of rehab, school, insurance, etc. Life is so precious. We know this from your story. Each day is a gift. Thank you for sharing your life with us and ministering to us through your blog. I continue to cover Lucy and your family in prayer. Hosanna in the highest!

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  61. Go Lucy go!!! So glad she's doing so well! She looks beautiful!!! You sure do have a wonderful family, and y'all will continue to be in my thoughts and prayers - Kelley

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  62. Have you thought about homeschooling Lucy? Some children just need an individualized approach to learning, and Lucy could possibly thrive with it!

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  63. GOD I want to lift every request and concern mentioned in Kate's post. You know best what worries are laying on her heart and the heart of others who have grown to LOVE LUCY.

    Continued unceasing prayers to Lucy, Kate, Erik, Ella and Jack.

    Let your Will Be Done and give the family peace that it is your Will always.

    Kate thank you for your continued posts and YouTube vidoes.

    God Bless you All.

    Kristi
    WA State

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  64. I still pray for Lucy! I dreamt about your family the other night. We were on vacation and I saw you all and ran & gave you all a hug. I wish I could do that, but for now, we send virtual hugs from Ohio! :)

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  65. SWEET :-))))

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  66. Kate--I never stop praying for sweet Lucy. Never. I am so proud of her and long for the day she can put all of this behind her. I wish I could quit my job and come be Lucy's "shadow" at school ... I know that she has much to teach me! So thankful for the prayers God has answered and we'll keep it up!

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  67. Praying fervently. She is precious and strong.

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  68. Thank you for sharing. I often felt the same way as you, that because we tried to stay positive, people lost sight of how serious my son's condition was (Heart Defect - he had 2 open heart surgeries before the age of 1) Yes, he was a trooper and recovered well and is always smiling. But we also needed all the prayers and support we could get. It was not a tiny thing. Some people even asked me if it was an out-patient procedure. REALLY?! Anyway, my heart breaks for your sweet little girl having to battle so much at such a young age. You have my continued prayers from Southern Cali! Best wishes for a full, fast recovery.

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  69. You know, after this morning I see more and more reason for you all and all of us to live life to the fullest whatever that fullest is. My husband and I were driving to a nearby town for me to see the dentist. Suddenly, I looked up and saw headlights coming at us full speed...and I could only say, "Oh, nooooo." My husband saw what I was seeing and swerved the best he could. (we were on the interstate). We braced, just knowing he or she would at least heavily sideswipe us. The car continued by where we had been and the two cars behind us who had been able to move after seeing us move. The car struck the next car head-on from our rear mirror view. I can't see life coming out of that impact. It tortured me all morning as I thought of what the blink of an eye can bring to any of us. If we fail to live minute by minute to the best, ignoring the trivial that comes along, we have lost so much special time. We could have easily been the ones hit and our lives would have been either gone or totally altered. YES, YES, every day that Lucy is able to go and do is so wonderful. It was so great to see her having fun at the beach, her bright eyes as she masters the therapy and her joy at seeing friends and famiy. Go Lucy, go is a good pep phrase for her....and she is...now Live, Live, Live every day in every way you can, Lucy, Kate, Erik, Ella, and Jack.

    Never doubt that those who have committed their prayers for you and your family will fail you. Won't happen!

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  70. It fills my heart with joy when you post about the good days, but rest assured, I don't stop praying for you all!! Lucy is on my mind A LOT, and I wear my green "GO LUCY GO" bracelet often . . . it sparks questions from others, and brings them to pray for her as well. So thankful for the good days you are able to share with your family, and praying for many more to come!

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  71. Kate,
    We are so happy to see these pictures and are reminded of how amazing the Lord is! He is empowering this little girl with such energy and strength beyond what any of us could have ever imagined! About the school thing. I said I'd never homeschool. The thought just overwhelmed me, but we are starting our 2nd year of homeschooling next month. For Kindergarten and 1st grade it only takes a few hours a day. We have loved it! You have the flexibility to learn at your own pace. We listen to books on CD in the car, get mounds of books at the library each week and snuggle on the couch together for HOURS reading one after the other. My soon-to-be 1st grader is way ahead on reading already. We love our Story of the World history books and coloring/workbooks that go along with it. It's super fun. Definitely something to consider.

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  72. I am amazed every day at Gods continuing goodness and faithfulness. Praying still for His blessings, goodness, healing, for Lucy and your family. I am sure you have already heard of University Model schooling, but if not you can look on their website to see if there are any schools in your area (www.naums.net). This is a school model that blends traditional school/private/homeschooling . Students in lower grades attend 2 days a week on campus with parent "co-teacher" at home on remaining days reviewing material learned and facilitating spelling, handwriting, and vocabulary. God willing, this is the school model we will start next year with our three girls...I thought I would pass on some info just in case you were not aware of something like this existing.

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  73. Read this and thought of you and your sweet family...

    "Don't be anxious to see far in front, or eager to choose the path, but quietly following behind the Shepherd, one step at a time. GOD is down in front, He is already in our tomorrows."

    Praying for your continued peace and wisdom from GOD in every decision you and your husband make. And praying for that sweet little girl. I could hardly see what she was doing in those videos because I was crying so hard. What a precious child you have.

    Hang in there, Mommy! GOD is already in your tomorrows!

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  74. We will never stop praying for Lucy, your family and all the families living this nightmare. I hope you feel the warmth of the love we send your way daily.

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  75. I don't know why you feel like you have to prove to someone that Lucy's surgery was serious. There is no such thing as MINOR brain surgery, and anyone who thinks there is, is truly an idiot. Brain surgery involved cutting through the thickest bone in the body, and exposed the most delicate/important organ in our body. My brother in law had "minor" brain surgery, and it took him a week just to recover from all the anesthesia he had to receive...I can only imagine how much more severe it is on a 5 year old body.

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  76. My heart just breaks that this adorable child has to face all these challenges. Lucy continues to be in my thoughts.
    As just an add on to the lovely letter that the teacher from Wisconsin wrote. I'm a retired teacher in Michigan who was responsible for the IEP (Individualized Education Plan). In addition to all of the items she mentioned, I just wanted to include that this document provides for ancillary services as well - Speech, OT/PT and social work. These supports are mandated by law too and would be of no cost to you. Believe me, the members of the team involved in Lucy's education would certainly work together to make sure she has a successful educational experience. At your first meeting should the team decide that an in-school format not be the best for her now, then her plan could be arranged for home. I really wouldn't stress to much about this, once you contact the public schools, she will be evaluated by all the professionals that will work with her. Once you meet with them and they share their findings and discuss the options, you'll be comforted to know that they too want what's best for her. It's often amazing how once you have all the facts in front of you, both you and your husband will be able to make a decision on what would work for your daughter. All the goals - objectives of the plan are specifically written for Lucy's needs. Another great thing about an IEP is that if what's decided doesn't work, then you meet again to change anything that's a concern. Lucy has so much determination and strength that any team that has the pleasure of working with her as well as her family should be more than determined to help this beautiful child achieve.

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  77. Praying, praying, praying. Go Lucy go. I read your blog daily and even though I may not alway post you are all in my thoughts and prayers daily. Stay strong Lucy, keep working hard so you can go home with your family to enjoy the rest of summer. I love seeing her smiling face in pictures.

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  78. Michelle in AustraliaJuly 18, 2012 at 5:58 PM

    I took a look at Lucy's incision and said 'OUCH!'. Well done on you Kate for reminding each and every one of us just how totally remarkable Lucy really is. God Bless you all.

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  79. We love you & thank you for sharing, still praying for Lucy!!

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  80. Just when I was feeling sorry for myself for being tired and having to work alot.... Lucy puts it all in perspective. GO LUCY GO. She is a fantastic little girl!!!

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  81. Just wondered if you thought of homeschooling for awhile. No, I don't know how you can leave her all day either. That would really have to be hard for you... Praying for your family.
    Nancy

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  82. Kate,
    I have been following your blog and continue to keep you in my prayers. I can't imagine!!! Only with God's love would you and your family ever be able to continue on with such hope.
    As a first grade teacher and a mom of two children, I would not worry about school, the "academics" at this point. Continue to love on her like you are while reading and playing some math games at home. This time with her is so crucial...she will continue to learn. If I lived closer, I would come tutor her for you. Education is so face paced and children continue to be challenged. It seems as though Lucy may benefit from taking time to heal while enjoying some reading and games at home.
    There are online reading books (raz-kids) where a child can listen and read books at their reading level. My students sometimes choose to do this during free time. :)
    Take care,
    Tanya

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  83. Wow, what a little trooper, and holy cow, medical science is amazing. Still thinking of you all and sending love.

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  84. Lucy is just amazing!! All 3 of your babies are precious!! Praying for you all constantly!!!

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  85. WOW!! I have never met Lucy, but she has given me more than I can explain.I would love to acually meet her one day.. what a miracle. praying everyday, it is amazing to me how she has impacted my life even though I have never met her.She is an angel from GOD, I believe this without a doubt. GO LUCY GO...
    l

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  86. Lucy is so strong it is amazing! I hope that you are able to find the answers you are looking for in regards to Lucy and her schooling. I urge you to look into and consider homeschooling her. Maybe it can be a temporary thing while you "figure things out" but it is something worth looking into. I wish you the best and am praying for Lucy (and family) daily!

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  87. Another teacher here...wanting to agree with the previous posters who explained some of the amazing support that should be available to you through special education services and IEP programming in your shool district. I have worked in special education for many years, and often times with students who are in the midst of medical issues ranging from recovery from surgery to currently undergoing chemo. Lucy should have the opportunity to be evaluated to determine what types of modifications and accommodations the school will need to provide to meet her needs. That can include modifications to her academics, her educational environment, and even the length of her school day. Also included would be specialized support from special ed staff, PT, OT, Speech, and any other professionals depending on what her present needs might be. There are also homebound services available for students who are too immune suppressed from treatment or too critically ill to attend classes on campus. As mentioned by the others, these are services that are federally mandated and provided at no cost, but you must advocate for her needs and request an evaluation in order to determine what types of services would be appropriate for her needs. Please take advantage of those services that are available, as I feel that it would truly benefit Lucy, as well as help you to feel comfortable with her participation in the school day! Best wishes and lots of prayers for your sweet family!

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  88. Your baby girl is so inspiring! I live here in Tipton County and teach in Shelby County. I also have a hubby who has suffered a Traumatic Brain Injury and several brain surgeries. All that to say I might be able to help with what options you should have. You should be able to arrange to have her PT, OT, ST come to you for services, if she's outpatient, but that may depend on insurance. BLAH...I'm thankful we have it but it's frustrating at the same time. For the school setting she would absolutely qualify to have an IEP written for her and those same services, PT, OT, ST would be provided to her based on her need at no charge. If you're not comfortable with Lucy being in school yet, you can still make all this happen...the therapists will come to you as Lucy can be placed in homebound. I had a student do the exact same thing a couple years ago. He had an IEP and received services, but he just was not ready for the school setting. So he had a homeschool teacher, provided by the county, that went to his house for his lessons and therapists went to his house for his OT, PT, ST. I hope this gives you a little insight into what you will be able to do. If and when you do meet for an IEP make sure you get your Parental Rights, Safeguards and Procedures. Everything you would need to know will be in that. Good luck and let me know if I can help with anything like this. Congrats on baby girls great news today!!!

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  89. My nephews both have Duchenne Muscular Dystrophy so from their very early years in school they needed physical help in school (only physical--both were actually honor students, so this was regular-classroom help, not special-ed help). The schools are required by law to provide a "helper" for your child if s/he needs help in the classroom. For my nephews, at first the school hired different people but after a few years their father actually took the job and was being paid to assist my nephews in school. It worked out really well for them--they only needed help getting to and from classes and with things like toileting, so the rest of the time he was just a regular school employee, often doing things like working in the office and sitting in with classes. It helped them all a lot to know that he was on campus if any needs arose, but the kids also got the in-school experience that they both needed and craved. You should look into whether or not such an arrangement could be made for you and Lucy.

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  90. I have been following your post for a while and praying for your sweet family, especially Lucy. My comment is about your concerns about schooling. Have you considered home schooling Lucy? I home school my 2 girls and it is not as formidable as most people think. It is the perfect option for you and can be as expensive or budget-conscience as you choose. I hope you will prayerfully consider this option. I think it could be the answer to your dilemma. If you would like to discuss it with me, I would be glad to.

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  91. If she goes to public school, the school by law has to create an IEP for her. She would have to qualify, which she would based on her health. There are options for all day school when she feels like it, going to school for part of the day, never going to school and having a teacher from the school system provide tutoring, etc. Plus longer time to complete assignments, extended test-taking time, you name it.

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  92. I just wanted to share with you, when you were talking about school for Lucy, my heart sank...I know how you feel! I myself am a protective mom ( I don't think there is a such thing as Over-protective, IMI). I home-school my boys, and have been since kinder. I'm not going to lie and say it is easy peasy, but I am going to say that it IS so worth it! My boys and I learn together and learn each-other. And as for socialization (just going to mention it, since this is some peoples MAIN concern), we are home-schooling for this reason also, NOT the only reason, but a good part of it, because socialization is my responsibility NOT schools. I choose to do meet-ups IE. park days, sports, play time, field trips and extra classes (for education), but again "I" choose for them right now, my boys are so impressionable at this age, and I feel responsible for them in all they do. And if anything, this time in their lives goes by so fast, I want to HOLD onto them, NO rushing to grow up or slide right through... LEARNING is suppose to be a fun time, and at their pace... And learning is never ending or a grade level. But to brag a little, my boys are well above most grade boys their age ;) And not because of ME, I think it's because they can advance as fast or slow as need be. LESS stress on their minds!?

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  93. I love how honest and open you are about everything and thank your for the pictures, all the pictures. It is eye opening to actually see what this amazing child goes through and comes out swinging. I really love the picture of the all kids in the bed- beautiful family. My prayers will always continue for you and your family. What an amazing family you have!

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