It\u2019s Sunday night and Chloe has had a pretty good day. When I left this morning she was still pretty sleepy but happy to see Mama walk in the room. Dr. Olson had just come in as well. She didn\u2019t have much to add but thought Chloe looked pretty well. She also believed Chloe would be on the floor tomorrow. That is still the plan. And the oncology doctor on duty, Dr. Kevin Norwood, Chloe\u2019s buddy. They should have fun together this week.<\/p>\n
So I went to church today and played \u201cA Medley for Chloe\u201d that consisted of four songs. The first, \u201cThe Braham\u2019s Lullaby,\u201d a song most likely, subconsciously written with Chloe in mind. The second, \u201cOh Holy Night,\u201d brought to me the realization of why it\u2019s such an honor to be able to spend all night in PICU with her while sleeping 5 minutes at a time. The third is Chloe\u2019s favorite song, performed by her favorite performer, M.J., \u201cSmile.\u201d And that\u2019s what she did, full and bright, when I told her that would be one of the four song medley I renamed for her. And the final song depicts what Chloe is all about, \u201cAmazing Grace.\u201d Again, it\u2019s a song that probably was in some way inspired by Chloe. I just barely made it through the performance. I was glad our soundman, John Mckean, had a lot of effects on my sax. It covered my shakes and lack of breath.<\/p>\n
Chloe had a few really great things go on today. Most importantly she was off the ventilator all day until about 10:30 pm. She did very well off the ventilator and they just put her on overnight so she would get a good rest. She didn\u2019t sleep all day but did rest well last night.<\/p>\n
She went for a wheelchair ride today also. Her tour took her downstairs and around the scenic areas of the hospital. You have to trick yourself into finding areas you can regard as scenic. Just getting out of these four walls is magical for her though. It was about 20 minutes of freedom!<\/p>\n
Something I wish I had been here for was the first trial at standing. It took three people to hold our rag doll but she had her feet on the floor and was upright. She was pretty nervous about the whole process because she doesn\u2019t have a lot of control over where her feet go and she doesn\u2019t have much strength after lying in bed for 18 days. But she did it at least. Now the goal will be to do this one or two times a day so that her strength and coordination returns.<\/p>\n
She and Mama got to listen to some episodes of Cinnamon Bear on the computer. There is a website that offers most all of the shows for free. She loves that series. It\u2019s kind of cool having a kid loving a radio show in these times. Of course, many refer to her as an \u201cOld Soul.\u201d<\/p>\n
She\u2019s sleeping well now and I\u2019ll be sitting vigil until Dana comes back to the den. I\u2019ll probably stay at the hospital tomorrow until we move. That should be easiest on Dana. Even though we have leaned the room down quite a bit there is still enough to overwhelm a worn out Mama Lion.<\/p>\n
I\u2019m sending love and a special thanks to all of you at Celebration Church today. We want to thank you for any cards or gifts that come our way but we will need your help. Please don\u2019t be bashful reminding us what you have sent. I\u2019m lucky I was able to remember my name this morning, much less who gave what to whom. Please know that it is all very warmly received, it\u2019s the very tired and worn out gray matter that is lacking. The bracelet was a big hit\u2026 but I don\u2019t remember who made it\u2026 so sorry.<\/p>\n
Blessings,
\nRon<\/p>\n","protected":false},"excerpt":{"rendered":"
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