I want....

"Momma:)" was the word I was greeted with last night when I returned to the hospital.  Music to my ears.  That was quickly followed by a request to go look for something to eat. The request was even sweeter when Lisa made it clear that she wanted to come with me to check out the nutrition rooms.  She got out of bed and we walked the hall for a good 15 minutes checking things out. Big grin:)

This morning I was greeted with "I want, I want, I want".  She requested cocoa puffs, fruit snacks, a specific backpack/animal that required a trip to the gift shop, a big breakfast, to watch tv, to sit in the chair, to play with her make-up, to kiss her bunny, to hold her babies.  With the ability to hit her pain pump anytime she needed, she was able to stay up for a good two hours before she crawled back in bed. 

Unfortunately the thought that there was a special toy of some sort waiting for her in the gift shop kept her from falling into a deep sleep. She rested for a bit, but was fussy.  When I asked her if she had pain in her legs or head, she said no, she just really wanted to go to the gift shop.  I put her off for a while more.  By the time Grandma arrived at 11, Lisa was agitated and she said the only thing that was going to make her feel better was a trip to the gift shop.  Grandma and I finally caved and agreed to take her down. Lisa insisted on walking the whole way!  She scoped out the various choices in the gift shop, selected a $50+ bear and hugged it tightly as Grandma paid for it.  She led us back to her room taking the long way so that she could show Grandma the fairy door located on the main floor of the hospital.

We returned to her room and some friends stopped in for a visit.  They chatted for a bit, shared a prayer with us and were getting ready to leave when Mike joined us.  Lisa was happy to see her Daddy but her energy was fading fast.  That was a bit unfortunate because this afternoon was a special one for her.  Father Ron from our parish came and said mass and administered to Lisa her First Holy communion and the Sacrament of the sick.  Lisa, of course, had other ideas and when the time came to take communion she refused.  Father handled it all in stride and allowed us to hold onto the host until she was ready a few hours later.   Lisa spent the rest of the day napping and asking for food.  She had some real good moments and some real "don't bother me" moments especially when it was staff waking her up for one thing or another.

As usual, Lisa is playing by her own rules.  Our nurses, docs, pain team and palliative care all have been pleasantly shocked by the little girl they are seeing today vs 3 days ago.  We are still trying to figure out what to do moving forward.

Please continue to pray.