Monday, February 28, 2011

Day 4

Oh what a joyful day!  So many accomplishments (highlighted in red) that my heart is exploding.  The day went something like this: She had her last bought of vomitting at 4am.  The team was trying to keep her off morphine, but because she lost all of her lortab they had to give her half a dose of the morphine to control her pain.  We had a consult with the pediatric urologist due to concerns about nerve damage to her bladder.  The big tumor in her spine was pushing against the nerves that control bladder function causing her to have a lot of pain before surgery.  She has been on a cathater since surgery and today was the day to find out how it was working.  We had been prepared by the urology department to expect possibly the worst.  Temporary or permanent spinal shock is often the case with spinal tumors.  And although we don't have a definitive answer, my brave little girl went potty tonight all by herself and almost completely emptied her bladder.  Erik and I were almost doing flips we were so excited!

Physical therapy started at 11:00 and while it was horrible to watch my baby in such agony, it was so encouraging.  She cried through the entire 20 minutes but never stopped.  The determination she showed was more than any adult could have mustered up.  God was really working for her.  I could see it.  He gave her some supernatural strength for sure today.  She sat up in the bed, turned her head from side to side and kicked her legs. 


Then.....she walked!!  Praise Jesus my baby walked.  She did have help and it was only 3 steps but wow!  She did it.  She's got a long way to go with her mobility and balance but it thrilled my heart just as much as watching an infant take their first steps. 


After PT, Lucy had to sit in a wheelchair fully inclined.  PT asked that she stay there for 30 minutes.  She did it for 50!!!  Once again, this was a major accomplishment for my sweet Lulu.  We then took a ride around the floor. 
Lucy was pretty much exhausted after that.  She has been resting peacefully the rest of the day.  Other accomplishments include:
  • watched 15 min of TV
  • nurses removed 2 IVs.  She only has the central line now that was surgically implated the day of surgery.  This is a port in her chest where she will receive her Chemotherapy.
  • she asked for food--real food like ice cream, pudding, cookies, powerade
  • her heart rate has stayed down to an almost resting rate all day
  • she kissed her mommy and daddy---sweet answer to prayer
Mommy had some pretty good moments today, too.....



Jack came to visit mommy today.  I wished it had been a more pleasant visit, but he is sick.  He was really fussy and irritable.  Aunt Cheri and Grandma to him to the doctor and he has a nasty ear infection.  It'll be 2 more days until I get to see him because we have to keep Lucy as healthy as possible.  I said a special prayer today that God would fill his mind with my voice, my laugh, my smell and that he would remember the feel my arms and kisses.  It rips my heart out to be away from him.  I need him as much as he needs me.  

 On a side note, my precious Ella got a special surprise today.  Yesterday we started to notice that she was displaying some worried emotions.  This morning she woke up and was felt too "sick" to go to school.  Although we knew she was fine, we felt like it would do her good to spend the day with her family.  So while Jack rested at the FedEx house, Ella spent the afternoon with Erik and me in Lucy's room.  Before she left to go home we gave her a cell phone.  I know, I know.  She's only 7.  But she needed some way to feel connected to us and this was something in her life she could control.  (she's a lot like her mommy--major control issues)  Since we gave it to her we have had no less than 20 text messages and 5 phone calls.  The sweetest moment of the day came when she called and asked me to say her night-night prayers with her. 

Thank you dear Jesus for a special moment with my baby girl.  We were absolutely connected through a loving prayer out of the mouth of a child. 

Pray for us tomorrow as we meet with the St. Jude team.  My stomach is in a nervous knot!


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12 comments:

  1. Kate, my sister gave my little girl a book for Christmas that allowed her to record herself reading it. Maybe you could do this and whoever is watching Jack could use the book with him. She got it at a Hallmark store. Just an idea. Praying for you guys...
    -Jen

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  2. What a joyous day! Praise GOD! GO LUCY GO! I can't wait to see you all!
    ♥ AMY

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  3. Kate,

    Just want to tell you that I love you and am so blessed by all that God is accomplishing through prayer and His power. You are a testament to His love and control of every situation in our lives. I pray everything goes well today and he gives you supernatural peace for your meeting with St. Jude.

    Emily

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  4. I am so happy you had a great accomplishments. The small things are the things that keep us going. We love you. We are praying and praying with you and for you.

    Rebecca

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  5. Praise God for Lucy's accomplishments yesterday! Her story is a true testiment that our Lord is the Great Physician. I have been praying so hard for you as a mother. I can't imagine your heartache from missing your baby. I will be praying that you all will be able to be home for a few days before going to St. Jude. In Christian Love, Candi Smith

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  6. Kate,
    I know you do not know me but I found your story on Kelly's Korner. I stayed up last night reading through your blog. Your family is precious and my heart goes out to yall. I just want you to know you are in my prayers. I know you are so proud of Lucy and the progress she made. God is so good!

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  7. I am a friend of Pam and JJ Anderson. I have been keeping Lucy and your family in my prayers daily and keeping up to date through your blog. The pictures of her during her PT brought tears to my eyes. She is doing so well! My mother had brain cancer (a different) type and it is such a difficult thing to go through. So happy that you have God in your life to lean on during this time. As I drove through Covington this weekend it made my heart so happy to see all the pink & purple bows put up. It's amazing to see God working through your family!! Praying for you all! Lucy is so brave!!

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  8. Praise God! Lucy is my hero. I am praying with every passing minute. Take one thing at a time. God will protect what He already owns. I love you.

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  9. An overwhelming joy came over us as we read this post. It is such a blessing to watch God perform miracles on little Lucy. I know he has just begun and he will continue to bless her. The power of prayer never ceases to amaze me. God is continually answering all of our prayers. We pray for the strength, hope, and courage that you and your family will need to get through this time. We pray especially for Lucy's strength and will to never stop fighting.

    In Christian Love,
    James and Martha Tanner and Jessi Pinner

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  10. Kate,

    Your (and Lucy's!) strength is inspiring. Praying for you to keep it up and for Lucy's recovery.

    Bianca

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  11. This post is so emotional, I can not even imagine what you are feeling as you experience her pain and accomplishments. What a brave sweet little girl! We are praying for you all as you meet with the doctors today. Love to you all!

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  12. I am praying for you constantly. I also wanted to help relieve some of your fears with Jack. I do have experience with that and I completely understand your fears. I was so worried with CiCi and read a ton on attachment. The most important thing at his age is that he is loved and has attached to all of you. Ciara did not even come home until she was 8 months old and she is absolutely my most attached to me child. Jack will be loved on in your absence and he will remember and love you whenever he is able to be with you. The resilience of children is amazing. I was also the oldest child in a family where my brother was in and out of the hospital for years. I was bounced around a lot but I enjoyed it. I think it made me tough, independent, and a bit adventurous. I was always in good hands and I enjoyed the attention I got. I remember a few times just wanting to be sick or break an arm or something to steal the attention a bit, but for the most part I was just a normal kid and not too affected by everything that was going on.
    Anyway I just wanted to relieve some of those fears because you have way too many right now. Continuing to pray for you all.

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