Sunday, November 27, 2011

November 18th: Feeling good for a couple weeks

After laying on the couch, not eating much for a few weeks Charlotte was pretty weak and tired. She did not look good, her doctor was very concerned. Then we put her on a steroid to try to help relieve the pressure in her head, she had one little dose at bedtime on Thursday night (I cant remember which Thursday... it all blends together now, I think the 4th of November) she had .5 of a ml... that's like 6 little drops. AND THEN at 4 AM she woke up and said MOM! TOAST! HONEY! Ok, we are not going to complain about the ridiculous hour, lets get some toast going! This was the first time she asked for breakfast in a long time. She ate two pieces of bead with honey. She was up playing all that day, eating and didn't take a nap once. This was amazing. These pictures were taken a weeks or so later, after she had started eating well. She was up and feeling good. She was eating cream cheese by the plateful, she went through an entire block every two days- I'm not kidding. We drove by A&W one day and she spotted it out the window... she started fussing and gesturing and asking to eat, finally we figured it out and doubled back to go through the drive through for a hamburger. Then at supper that night she saw the napkin left over from lunch, and asked for another burger- so her daddy went back out in the cold for another burger. With the eating and feeling generally better also came little steroid rages.Once I made her toast and put it in the toaster by accident (the toast that Charlotte asks for is actually just bread, not toasted at all) well she put the first bite into her mouth and scrunched up her nose, squinted her eyes at me, and took the bite out of her mouth to inspect. With a scream she threw it at me and flipped the rest of the plate off the table onto the floor. I got the message, don't tick her off!
Here she just finished up a plate of cream cheese... more please?
Here she is, must be finished- I'm not sure if she was wiping off her mouth or showing us how big her tummy was from all the cheese.
We had almost three great weeks, she was eating, feeling good, and enjoying herself again. Her doctor was so happy with these changes, I think it was more relief than he had even hoped for. We realize that the steroid was not really fixing anything, it was just masking the pressure in her head that was causing her the discomfort. A side effect was that it boosted her appetite. We had no idea how long it would continue to help her feel comfortable, we were still taking things one day at a time. But when that days are that good they fly by way too fast.

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