Guest guest Posted October 10, 2004 Report Share Posted October 10, 2004 Hello, I just wanted to update everyone on 's progress. We're still at NEMC, having watched the same elmo videos over and over for 15 days now. is alert and moving around, babbling, crawling a tiny bit, and complaining when her movies finish. We've seen some signs return, such as " all done " when she didn't want to play with the OT. She's collected a few new diagnoses, including metabolic encephalopathy, neurogenic bladder, and retinitis pigmentosa. Now what we're waiting for is for her to tolerate tiny jtube feeds. Right now she's getting 5cc/hr of pedialyte and she's acting like it's a mixture of tequila and ipecac. Her autonomic symptoms ar completely off the wall and she's getting tons of IV fluid and sodium. We may try florinef to keep her BP up. She'll be having manometry testing on Tues to try octreotide to get her to tolerate tiny feeds. Thanks for thinking about us. is stable, making tiny gains, and hopefully will be able to go home at the end of the week. Heidi, 's Mom, 2 years, mito myopathy, TPN dependent, dysautonomia, dystonia, seizures, RTA, etc. Darla, , Suzanne, Ann, I'd love to hear from you. My email on the laptop is mom2colemankidz3@.... Quote Link to comment Share on other sites More sharing options...
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