Forgot to Add.....

So, after that long post, I forgot to give an update on the spinal fluid leak.  As I mentioned last night, Lucy started leaking spinal fluid from the hole where the drain had been.  This was not a total surprise, as we were told this might could happen, but we definitely had hoped it would not.  She was placed on flat bed rest last night and the leaking stopped.  While she was in for the CT scan and sedated this morning, Dr. S came in and placed a small stitch in her back to close things up.  Well, wouldn't you know it?  No longer than 2 hours she was leaking again.  He little panties were soaked at the top.  This time we think she is leaking from the place where the needle was inserted to put the stitch in.  She is back on flat bed rest until tomorrow.  If she is not leaking, we will proceed with our jam-packed day of appointments and consultations.  If she is leaking, then she will be on bed rest tomorrow and during her MRI under sedation on Friday they will take out the stitch and redo the whole area.  The docs still feel as if this not going to be a huge setback, but just something we have got to get under control. 


A special thanks to Emily and Zach Cook and their Sunday School class at Bellevue Baptist Church.  In an effort to minister to one of the many needs of the families on the 7th floor, a dinner was planned and boy did they come through.  We fortunately/unfortunately had to miss out because of our sudden transport to St. Jude, but I heard there was enough food to feed an army.  When Lucy gets well, I will forever be an ambassador for Le Bonheur and the many needs of the families who are serviced there. 

One quick story....I got a call late last evening saying that the families were just so grateful for a nice home cooked meal and that many were actually moved to tears.  There was one sweet young lady who approached the social work staff on the floor, asking if it was ok if she made a plate for the grandmother who was staying with her.  Come to find out, the grandmother had not eaten for 2 days because she had no money.  This is the type of situation all over that hospital.  This being said, if you ever want to know more about how you can help out at Le Bonheur, please contact me and I will get you in touch with the right person.  God has placed this hopsital on my heart for a reason and after I get my Lucy well I am going to run with it!  If He wanted me to be an advocate for the hospital, I wish he would have just sent me an email.  I didn't need to be there for 21 days to figure it out.....or did I?
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  1. You made me laugh, yes an email would have been perfect. Go Lucy Ducy Go.

  2. Hahaha!! Sometimes it would be great to recieve an email from God!

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

    Thinking of all of you, Lori

  4. Hi Kate...Hope you & Lucy had a good night. I hope the leaking has slowed or stopped by now and you can proceed with the appts you have planned today and you can continue your fight! Isnt it funny that no matter what situation we are in ... from looking for misplaced car keys to battling cancer that God orchestrates our lives in such a way that we have to seek Him out and trust that He is going to reveal to us what we need to know. He is going to redeem your time and He is going to bless you incredibly for staying the course and seeking Him first thru all this. What a monumental impact you are having (and will continue to have) on the families at Lebonheur & St. Jude. You said in one of your other posts that God could use Lucy, but you want her back when He's done....look how God is using you thru Lucy. I'm sure He smiles and it warms His heart to see how you are doing this in His honor and for His glory. You are doing an incredible job...Isaiah 40:31 just came to mind while I was writing this..."but those who HOPE in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." Thank you for reminding us (me) on a daily basis that this verse is a promise from God. I hope your day is wonderful today...and I hope that Lucy is in great spirits today too!! Lots of prayers for ya'll today....In Him, Laura

  5. Sounds like overall a good day. So glad to hear. Praying that the leaking will stop or be an easy fix. Heard something in my bible study last night that I thought I would share. She was talking about trying to get ourselves out of being self absorbed and pouring ourselves out so we can be filled with God's goodness to "spend" on other people (spend time, spend focus, spend money)....she even applied this to children and I couldn't help but think about Ella and what she is/will be sacrificing as Lu needs so much attention now. Ella will learn early about sacrifice and it will make her a strong teenager and adult to know about sacrificing for others and life not being all about her. I pray that this time will be such a time of growth and that ultimately her spirit will be strengthened through helping care for and sacrificing for her sister. We all want to raise our kids not to be self absorbed and needs like this in a family will certainly provide for selflessness. Sooo glad you are at St. Jude...now you can start talking to Lucy about where she goes from here....HOME...and this time she won't be dissapointed! BTW...after talking to Kavenaugh, I get your drift about LeBonheur and why you were nudging the 5K in that direction!! Love you guys and always here for whatever it takes!

  6. Kate.....I want to thank you so much for taking the time to keep us all updated on Lucy. I know that you're exhausted and could use that time to just close your eyes and rest! Everyday I anxiously read your blog to see how "our" little girl is. Your strength is amazing Kate! I pray each day for God to give you and Erik the strength and the wisdom to carry on with what has to be done, then I thank Him in advance, because I know He will. Praying...believing....trusting God for a miracle for Lucy!

    Judy Ridings

  7. That is so touching that they were able to pull it oof. Yes, I think we do often forget to remember those who are in the hospitals and the sacrifices their families are going through to be by their side.

    I am with you an email would have been a little better for your eyes to be open to others in the hospital. We are praying for you all everyday.

  8. Kate..i am praying daily for little Lucy and i know that she will make a full recovery and this time next year she'll be the firefly catching champion!!!! I have 5 kids of my own and one is Lucy's age..I showed her the pictures of Lucy and told her the story and every night when she prays she includes Lucy.I myself have had a child that was born with Craniosynostosis and have stayed at Le Bonheur a few times.I would love to know how i can help with support for the families in need ..my email lowesfamily48@aol.com

  9. Kate,
    This post moved me to tears and you probably know why. For you to be concerned for other families at this time is truly amazing. Unfortunately, we see this kind of thing happen often--families with little or no money for the basic necessities. If not for the generosity of our staff, families and good hearted people, I don't know what they would do. I sincerely hope Lucy is better tonight and pain free.