Guest guest Posted October 15, 2004 Report Posted October 15, 2004 Glad to hear that you can take home. I am always thinking of her and praying for continued improvement. Best wishes _________________________________________________________________ Get ready for school! Find articles, homework help and more in the Back to School Guide! http://special.msn.com/network/04backtoschool.armx Quote
Guest guest Posted October 15, 2004 Report Posted October 15, 2004 Glad to hear you will be coming home today but I know how the stomach issues must be causing you lots of stress. If you want to talk some more send me your phone number to honeybear50317@... and I will call you back sometime soon. Glad she continues to make some progress. Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... Zipporrah (11 mon.) Mito, strokes, SID, GERD, 100% G-tube fed, asthma, trach issues, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) update Fri > > > Good morning > Lots of updates to pass along. is stable, is starting to > sign again, and is going home today. That's the good news. However, > the results of her manometry and upper GI are in, and the news is not > good. has gastroparesis and neuropathic pseudo obstruction. > Her guts just plain do not work. Also, her hernia is now a full > third of her stomach and is very floppy and waiting to strangulate. > The surgeon wanted to operate today but Dr. Korson felt that a Friday > afternoon was not the best time to do major surgery on a mito kid. > So we'll be returning to have it done on the 25th. > > has made lots of progress but she's still a very different > child from who she was in August. Her spunk is showing signs of > returning and she's telling me what she wants. I think her > difficulties will be more visible when we get home and she's > surrounded by toys that her hands just can't operate. She'll be > using a stander so that's one more piece of equipment in our tiny > house. Cathing is going well but it's one more thing to add to our > already overwhelming routine. Luckily our nursing hours have been > increased but that depends on the agency finding nurses to fill > them. > So here we go. Wish us luck. Our home computer died so we're using > the laptop most of the time. My email address is > mom2colemankidz3@.... > > Heidi, 's Mom > 2 years, complicated mito kid. > www.caringbridge.org/ma/heather > > > > > > > Please contact mito-owner with any problems or questions. > Quote
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