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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