3.21.2011

Home Sweet Home

After a long day at Le Bonheur and then St. Jude we finally made it home at around 5:30.  We are tired, overwhelemed and honestly I am scared.  The severity of our situation finally hit home tonight.  Being at home alone with a sick child and no nurses is awfully frightening.  Lucy has a fever, but not enough to send us running to the hospital.  I am going to bed now to stare at her I'm sure.  I'm quite confident I won't be sleeping much...

More tomorrow.
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43 comments:

  1. So glad you made it home. I hate that Lucy already has a fever. Your first night back home should be of great comfort but with the added stress of the fever, I'm sure you will find it hard to relax. Hopefully, the fever is nothing. Praying for you and your family to get some much deserved rest tonight.

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  2. We read this in our Sunday School class and I wanted to share it with you (Life Together, Bonhoeffer),
    "It is not in our life that God's help and presence must still be proved, but rather God's presence and help have been demonstrated for us in the life of Jesus Christ. It is in more important for us to know what God did to Israel, to His Son Jesus Christ, than to seek what God intends for us today."
    We can find hope in what God will do because we can read about what He did for Israel in crossing the Red Sea, the miracles he performed, and the people He healed. The children of Israel were faced with the Red Sea! No where to go and no hope. Yet when all seemed lost God performed a miracle. Praying your Red Sea opens soon and you are able to pass through safely to the other side!He's done it before and He will do it again. Praying you get some sleep and find comfort in past miracles God has done!

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  3. Sending much love to you. I can't imagine what you are feeling right now but just remember that you know your little girl better than anyone. Trust your instincts. You'll learn this just like you learned classes in school. You will know more than you ever wished to know, but you will know and you will be Lucy's absolute best caregiver. Many prayers to you tonight. I do remember bringing Ragan home as a newborn from the hospital on a breathing monitor and being terrified of it and then I remember the day I had to turn the monitor in because he no longer needed it and I was terrified of no longer having the monitor. UGH!!! I know it will be hard but I sure do hope you can relax and enjoy your time together at home.

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  4. Praying for a restful night for all of you.

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  5. Excited to read you guys get to spend the night at home. There really is such comfort in being in your own place. I read this verse tonight and wanted to share it with you, as I am sure this is how you feel many moments.

    Praying without ceasing for you guys,
    Amy and Nathan Pellegra

    Romans 8:26
    Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words.

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  6. Now I lay me down to sleep,
    I pray the Lord my soul to keep.
    May Angels watch Lucy through the night,
    And wake her with the morning light.

    Amen.

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  7. Praying for your through your first night home.

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  8. Hoping for a peaceful night (under the circumstances) for all. I remember the feeling well! No immediate medical support plus so much going on = a stressed-out monther for sure... Hope He enables you to rest with Him in control (and with Lucy very close by!).

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  9. So glad to hear you made it Home!
    I'm praying it all goes well and you can all enjoy being at home together. (As I'm sure you do.)

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  10. Praying for courage and strength for you and Erik. I know it's scary, but you can do it.

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  11. Praying you had a good night and that all is well.

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  12. I have been praying for you and was thinking that it would be scary to be at home without the support of the hospital staff. However, you have the support of our great big God. I hope you had a restful night last night.

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  13. Kate, trust in God.The only fear we should have is the fear of the Lord anything else is not from God. Lucy is in His hands. I will be praying and praying for you to trust Him. I know this is not easy, it is really hard but keep your eyes on Jesus and you will make it through.

    Praying,
    <><

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  14. Kate - I sure hope your sweet Lucy did great last night. I hope you had a good night as well. Praying for you both during this transition of being home. :) In Jesus Name I pray - Tina Anne, Eads, TN

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  15. Hope your night went okay... I think of you all often. Prayers!

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  16. That is awesome news!!! I bet she will be so happy to be back home. I pray that her fever stays under control!

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  17. So happy to hear you are finally home! Ive been following your blog ever since I heard of sweet Lucy - what an inspiration you and and your family have been to so many people even in your time of despair. My husband pastors WFBC, the church where your Uncle Warren Rose attends, please know that I am praying for you and your family daily. As a mother of 3, 2 girls and a boy like you, I cant even begin to imagine what you are going through but I lift you up daily as I know so many other do as well. Continue to Keep the Faith! Love to you - Sisters in Christ, Shelly

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  18. I'm sorry Kate, I hope you got a bit of shut eye. You guys are in my thoughts and prayers.

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  19. GO LUCY GO!!! Your sweet face and sweet smile brightens so many lives and we continue to pray to God for your healing! In Jesus name we Pray! Tina Anne - Eads,TN

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  20. I have been praying for Lucy for a few weeks and keep up with your posts daily. Lucy's story has really touched my life. The past few weeks I have been more thankful for my blessings than ever before. As a parent you are an inspiration to me. You are such a courageous woman and I admire your courage and ability to stay positive in a horrible situation. There are lots of prayers being said for Lucy here in Nashville as I tell everyone that will listen about her story.

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  21. Praying that you all were able to find a little rest last night. Hoping today will be restful and provide lots of special moments for you as a family at HOME together!

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  22. You will do fine and God will give you the strength. I remember when our family was struck by lightning and my brother was in a coma and had a trach and was bad....my parents decided to bring him home in a hospital bed in the middle of our living room. He was 11 and is now 45...and doing great. Keep your chin up and we will continue to pray for little Lucy and her family.

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  23. At home with all the family together has to be a true blessing:) Regardless of the situation, a family being close & together will brighten up any bad moment. I hope God continues to heal Lucy & I will continue to pray:) Your family is continuesly on my heart & mind. <3

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  24. I am SO thrilled to hear this news. Though so scary, it has got to feel great for sweet Lucy to be surrounded by the comforts of home. Though we have never met, I recently heard about Lucy’s battle with cancer and have been praying for your entire family. Keep fighting sweet girl! Our entire church in Arizona is praying for you!

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  25. So glad you're home! Hope you had a good night with the family!

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  26. I am so happy to hear that you guys are home! I know you will do fine. A Mommy's instinct is better than any nurse! Continuing to pray for you guys!

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  27. Kate, God will lead you to know what to do! Luckily, neither hospital is far away! I am so glad you got to go home, and especially happy for Lucy... I'm sure this is such a great thing for her and her spirit! Enjoy your time home, and all together again. I'll pray for your guidance in her care!

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  28. Kate, I was forwarded your blog and have read your story about sweet Lucy. Our story is different, but I do know what it's like to not know what the future is for a sweet child. While I was still pregnant, my son Zane, was diagnosed with a stroke and we were told he probably wouldn't live past birth. Heart-wrenching. We prepared for the worst. God was with us through that whole time. Zane was a miracle baby for sure. He survived and is thriving 2 years later. He had to have a shunt placed for a blockage as well. Our life is not what we expected and we are part of a "club" we never wanted to join, but God has been so good to us and we truly believe Zane has brought Him so much glory. We just sit back in awe sometimes at what God is doing. Anyway, my hope is to encourage you in this difficult time. I am praying for you and your family and Lucy. I also saw on your blog that you listen to K-Love. Have you heard the song Blessings by Laura Story? If not I think it will speak to you. You can listen to it on YouTutbe. I am praying for you guys as you walk this difficult road. -Debi

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  29. I'm so glad that you got to go home for a short bit. I know that must feel so wonderful to be at HOME. Praying for comfort and peace while you are all together as a family under one roof.

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  30. Praying for and LOVING you from Cookeville!
    The Conley's

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  31. Oh, this post makes me so happy. I am so glad Lucy has been able to come home for some bit of normalcy. I have been following your blog since I found it through Kellyskornerblog.com. I pray for your family daily and a few times I have read it, I have just cried. I can't imagine what you are all going through but it is truly amazing the amount of love and support you have behind you. Lucy is a fighter and I know SHE WILL WIN!! <<<< L.Grant and family!! >>>>

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  32. So glad you are close enough to go home...

    Happy moments, Praise God
    Difficult moments, Seek God
    Quiet moments, Worship God
    Painful Moments, Trust God
    Every Moment, Thank God

    Lori

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  33. Hi Kate,
    I'm Katy and I stumbled on your blog a week or so ago and have been reading ever since. I am captivated by your little Lucy. I have a little 5 year old girl too and I just see her in your Lucy. What a beautiful little girl. I can't imagine your heartbreak over the events of the past months but I am inspired by your heart in it all. Praying every day for your sweet Lucy.
    Katy

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  34. Kate-
    Maybe this will be exactly what little Lucy needs to get better, a familiar place with familiar things. I don't know you or your family but I was introduced to your blog by my sister in law (who also doesn't know you), I just want you to know that I pray for you and your family everyday. I pray that God will rest his healing hands on Lucy's precious body and bring her back to her normal, healthy self. Lucy is so strong, it's amazing how a 5 year old can be so many people around the world's hero, but she truly is. She is SUCH a fighter (as is your family), she inspires me. Good luck with your first few days home.

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  35. Welcome home Lucy! Praying for a good nights rest for everyone. God bless you!

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  36. im a new follower
    :) wanted to say hi ... i like your blog alot and your kids are CUTE!
    www.buildinganewhive.blogspot.com
    cja

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  37. Happy to hear that you are home. I know that there are many back and forth trips to be made, but there is something to be said for your own 4 walls. I hope that you are able to settle into your "new routine" and things go well for Lucy! Take Care,
    Karina: the Nashville SLP and wife of a cousin of your cousin's husband! whew! :)

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  38. Praying for Lucy. xoxoxo from Knoxville!

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  39. Kate, I remember when my nephew came home with us from the Med after our thinking he might not survive a horrible head injury! Reading your entry reminded me of how unprepared I felt for such a task and responsibility! Run him to the hospital for nothing, the trip would be hard on him. Call it wrong and not run him to the hospital and he could die! I understand so much that you were so happy to finally be away from the hospital and at home, yet scared to death for the same thing!
    We continue to pray for you and your precious family!

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  40. I started following your blog a few weeks back. I have two children, one with autism and one who passed away in October at nine months. I used to work as a pediatric oncology nurse and I know how hard it is on families when a child is going through treatment. I also know how hard it is to have an ill child. You are doing a wonderful job of being a great Mommy to all your children. And a great job of being there for Lucy. I can't imagine how scary it must to be at home with Lucy right now but Mommy instinct is a powerful thing. Trust yourself and what they have taught you. You and your family will be in my thoughts.

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