Guest guest Posted October 26, 1998 Report Share Posted October 26, 1998 re: Nosy questions. I think that those people mean well. They just want to talk with you about your child and they don't have a clue how to do it. There are many times I have seen children with disabilities (even since was born) that I have no idea what to say to the parents. I want to talk with them about our commonalities. There is nothing I hate more when going out in public than people ignoring because they are so uncomfortable. It hurts my feeling so much. But when people stop me and talk with me about and his problems I open up and I think it makes them more accepting of instead of fearing what they don't understand. Maresa Fawns Mother to ph (4) and (2) CHaRGE ---------- > From: BMousouris@... > To: CHARGEonelist > Subject: Re: Misc. > Date: Monday, October 26, 1998 3:17 PM > > From: BMousouris@... > > when people ask why Mackenzie has hearing aides, you could say, > > " So nosy people have something to ask about. " > > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 1998 Report Share Posted October 27, 1998 Maresa Fawns wrote: > > > > re: Nosy questions. > > I think that those people mean well. They just want to talk with you about > your child and they don't have a clue how to do it. There are many times I > have seen children with disabilities (even since was born) that I > have no idea what to say to the parents. I want to talk with them about > our commonalities. There is nothing I hate more when going out in public > than people ignoring because they are so uncomfortable. It hurts my > feeling so much. But when people stop me and talk with me about and > his problems I open up and I think it makes them more accepting of > instead of fearing what they don't understand. > > Maresa Fawns > Mother to ph (4) and (2) CHaRGE > > ---------- > > From: BMousouris@... > > To: CHARGEonelist > > Subject: Re: Misc. > > Date: Monday, October 26, 1998 3:17 PM > > > > From: BMousouris@... > > > > when people ask why Mackenzie has hearing aides, you could say, > > > > " So nosy people have something to ask about. " > > > > > > ------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 1998 Report Share Posted October 27, 1998 I loved this one....still chuckling! At 03:17 PM 10/26/98 EST, you wrote: >From: BMousouris@... > >when people ask why Mackenzie has hearing aides, you could say, > > " So nosy people have something to ask about. " > > >------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 1998 Report Share Posted November 17, 1998 I hope I can shed some insight with the experiences I've had with Tryny Question: what type of nutrition suplement do they have your daughter on ? Tryny has been on pediasure for 3 years now and we feed him continiously all night (3 cans) and then spread out 3 cans during the day (feeding for an hour each feed). If you could come up with some sort of schedule simular to that, it would free you and your daughter up for longer periods without feeding all day. Tryny has a g-tube (a button now, he has also had a nisen fundoplycation) since he was 2 weeks old. I hope this helps. Now to your daughter having a flu and not being able to shake it. Tryny has always been that way (not sure if it is due to the CHARGE Syndrome or due to the fact that he also has Di syndrome). But Tryny catches EVERYTHING out there and " never " catches a mild case of anything (colds almost always turn into pneumonia and the flu is almost as bad). If you have a Pulmomate (machine to give breathing treatments using albuterol) it helps to keep the lungs open and breathing easier. I hope some of this helps. If I can do anything more please don't hesitate to write. Debra mother of Tryny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 1998 Report Share Posted November 18, 1998 Hi Everyone, Thought I'd update you all on the j-tube saga. We finally decided that it would be in MacKenzie's(or at least her lungs) best interest to get the j-tube when a different doctor, Kim Blake CHARGE Specialist, told us that we should forget the tube and do nothing different. Where do you go with opinions that are completely opposite? After much arguing between many doctors and ourselves we decided to go with the tube, in favor of her lungs(duh), but to continue oral feeds minamally, as MacKenzie's major problem seems to be reflux as opposed to swallowing problems. Finally decided on what to do, we've now been fighting on how to do it. I don't know if anyone is familiar with a G-J tube, which is a one piece tube that goes through the g-tube site but has a j-tube inside of it and is threaded into the jeujeunum. This is what we want to do. It means one less surgery, one less surgical site and one less tube. But, you guessed it, the surgeons don't want to do it this way. For no other reason than they don't usually do it that way. So, to say the least , they think I'm the parent from hell for not automatically doing what they want. But oh well they'll get over it. I'm hoping we'll get this straightened out this week and not have to fly to a different city to get the service we need. MacKenzie has had a horrible flu bug all weekend (sounds just like what Saleah had), so I guess it's a good thing surgery wasn't planned for now. Now here come the questions.MacKenzie's belly is burned raw from the vomit and bile that leaked around her tube while she was sick. Any ideas on how to treat it? Do CHARGErs usually take longer to bounce back from viruses, I've never had a child so down and out with the flu as she's been. We've been told that we'll need to start with 24 hr continuous feeds, going down to maybe 18hrs. How do I keep this tubing attached all day to a very active child? I can see her pulling the j-tube out every chance she gets. We've gotten a Enteralite pump from Zevex, I hope this is the best for our needs. Well I should sign off, sorry for the long winded letter, it's been awhile. Take care, Jeanie Colp mom to MacKenzie 5 mths.CHARGE, Tyler 7, & Zachary 4 Nova Scotia, Canada P.S. Do you usually take your kids to the CHARGE conferences? Just trying to plan for Texas. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 1999 Report Share Posted January 14, 1999 Tim Nobody has really done any testing for those problems. They had me get a cardiogram, ultrasound on the kidneys and eyes rechecked for colobomas. The ENT has looked into her eyes, but what he was looking for I don't know. And there hasn't been a need for a Cat Scan or MRI. I guess they want to wait for the offical word from genetics that KK has CHARGE. Even though there are so many of us say she does. Well see. Korey mom to KK (almost 3yrs old) ___________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com/getjuno.html or call Juno at (800) 654-JUNO [654-5866] Quote Link to comment Share on other sites More sharing options...
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