melanie has had a pretty rough week. she has been very irritable and trying to deal with pain. she spends a lot of time on-edge and not wanting her brothers near her or anyone to talk. any little thing can set her off into a tirade. many times she doesn't want me to touch her. she says she won't tell me where it hurts, she doesn't want anyone to talk "when i feel like this." she will cry out and i will ask what's wrong. she will say, "i can't tell you; i dont want to talk about pain!" mornings seem to be the worst and sometimes again in the evening. during the afternoon she usually does well with distraction.
we had coupons to old country buffet, so we went wednesday when scott and brandon got home. after we were there i realized it was the first time we have ever all gone out to eat together! melanie takes in the surroundings with almost infant-like awe. she looks around wide-eyed, commenting on everything she sees. she had fun playing with a plate of food. the salt and pepper shakers had a little less in them by the time we left (she used them to "decorate" her plate of food). she enjoyed crunching on some ice, taking in the surroundings, and decorating her plate. about 30 minutes after we got there she all of a sudden started crying and wanted to go home. we were just finishing, so she settled in against daddy and rested. her skin was terribly mottled all over by the time we left.
thursday was another of the same . . .rough morning, very irritable, but managed to get through. she came outside with us in the late afternoon and "played" kickball with me, the boys, and some neighbors. a neighbor girl held melanie's hand, helped her kick the ball, and walked around the bases with her. melanie thought that was really neat.
friday was a rough start to the day again, though not quite as bad. early afternoon i took melanie and ethan to the library which they always love. then we went to a friend's house. both kids had a great time there. i was afraid the evening would be awful after the energy she had expended, but she actually did pretty well.
today was another rough morning. i think i will try to get her pain meds in earlier or something, because the mornings are really tough for her. the rest of her day wasn't too bad, though she must be quite tired. she spent a good portion of the day laying on my bed. she asked for bed before 6 tonight. however, as i emptied her ostomy i could see it was coming loose and had leaked a little on her ostomy belt. so we had to do a quick change. she was not a fan; she just wanted to go to bed. but she did ok, i did her chlorhexidine scrub, and she was off to bed.
it must have been tuesday afternoon that we all went to a small park near here. the boys enjoy a park, of course; but it is such a rareity for melanie that she is beyond excited! she sure loves to *soar* on the swings!
brandon helped her go down the slide.
today melanie and ethan were being puppies, and brandon was their owner. had to snap a pic.
we go on tuesday to meet with gi to discuss the enlargement of her liver and spleen and also discuss the contrast in her colon that's been there since nov/dec.
i am hoping the increased level of pain and irritability is at least partially being caused by the vancomycin (iv antibiotic she is on for two weeks to make sure all the bacteria in her bloodstream/port is gone). she's still got another week left on it. just hoping this is not her new baseline.
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