This morning, Christmas Eve, was bittersweet for me because Danielle was discharged from out-patient rehab. She has reached Plateau in functional progress, which means they really cant do much more for her at this point so theres not much reason to continue rehab. She isnt making any gains so they feel a period of rest will be okay right now. By that, they mean I will continue to do her exercises at home, paying close attention to frustration and fatigue levels and not overdoing it so that she starts to dislike the work. The chemo being administered through her chest port has robbed her of much of her energy, therefore she flags in rehab. Her rehab doctor says that even doing 50% of her previous level is better than doing nothing, so we will keep a home regimen in place. She has tapered off on the longer naps, so maybe her body is becoming acclimated to the chemo and she will begin to gain more stamina. Some days she will do better and I always hope this is the beginning of an upswing, but the next day she might not do as well. She has now had 4 brain infusions of chemo (these dont seem to have any effect on her) and a new MRI will take place soon. She is on steroids to prevent swelling in the brain, so she has the round cheeks again and stays hungry. I am trying to keep her on a healthy food path for these cravings and she doesnt need to re-gain the 40 pounds she lost since March 2013. Thats 40 pounds she would have to carry as she tries to do exercises, and 40 more pounds I have to catch if she buckles at the knee. She remains generally silent, but speech exercises of course force her to talk, and she understands more than you realize. She will laugh at a wisecrack, so I know shes listening and comprehending. Sometimes she will say Thank you if I do something for her, and even when she gets frustrated and yells NO! I dont mind because I love to hear her voice. Last week we were in my van and bumping along on a brick street while Danielle was playing a game on her phone, and she suddenly says, Love, you drive like a nut! Hey Ill take anything I can get. I often wonder what goes on in that little round head. She will look around as though seeing the room for the first time, and will look at me between every bite when were at the table. I look right back and try to smile at her. Today as I was getting her dressed, I said, Tomorrow is Christmas, and she laughed at herself and said, I didnt even know! Definitely not our best Christmas, but I am thankful I still have my girl with me. I hope your Christmas is your best ever.
Posted on: Wed, 24 Dec 2014 19:59:06 +0000
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