Guest guest Posted October 3, 1999 Report Share Posted October 3, 1999 Marcy, And I thought my Bilirubin was high. I can't believe it was that high. I just had a second LFT done to see if anything has changed in the last month. I may be getting another ERCP. When was the last time that had one? How often does he get them? You too are in my prayers as well as . Larry UC-95 PSC-96 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 1999 Report Share Posted October 5, 1999 Marcy... Hi...how you doing?...As a mom we are dealt with a lot that we are not really prepared for...such as school....Ty was on home bound for 7 months in his freshman yr....this was before his PSC and AIH were even diagnosed...He was home because of his Rhuematoid Arthritis...couldn't walk...It was a very tough time...He's back in school now and emotionally he is doing better....They need to be with their friends....doing all the normal stuff for as much of their day as possible....then the other stuff...hosp visits..lab work...tests etc...won't seem like they consume their entire life...The teachers wil just have to learn to deal..and unfortunately we as the mom have to become " pushy " to get the fair shake for our kids....I have had to fight the school for Ty's sake...He is now being put on the 504 government program....for fairness on the part of chronically ill kids...Talk to your school and fight for this...you can have it wave absent problems and the teachers by law have to give a little.... Hope this helps.. Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 1999 Report Share Posted October 5, 1999 Marcy... Hi...how you doing?...As a mom we are dealt with a lot that we are not really prepared for...such as school....Ty was on home bound for 7 months in his freshman yr....this was before his PSC and AIH were even diagnosed...He was home because of his Rhuematoid Arthritis...couldn't walk...It was a very tough time...He's back in school now and emotionally he is doing better....They need to be with their friends....doing all the normal stuff for as much of their day as possible....then the other stuff...hosp visits..lab work...tests etc...won't seem like they consume their entire life...The teachers wil just have to learn to deal..and unfortunately we as the mom have to become " pushy " to get the fair shake for our kids....I have had to fight the school for Ty's sake...He is now being put on the 504 government program....for fairness on the part of chronically ill kids...Talk to your school and fight for this...you can have it wave absent problems and the teachers by law have to give a little.... Hope this helps.. Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 1999 Report Share Posted October 5, 1999 Marcy... Hi...how you doing?...As a mom we are dealt with a lot that we are not really prepared for...such as school....Ty was on home bound for 7 months in his freshman yr....this was before his PSC and AIH were even diagnosed...He was home because of his Rhuematoid Arthritis...couldn't walk...It was a very tough time...He's back in school now and emotionally he is doing better....They need to be with their friends....doing all the normal stuff for as much of their day as possible....then the other stuff...hosp visits..lab work...tests etc...won't seem like they consume their entire life...The teachers wil just have to learn to deal..and unfortunately we as the mom have to become " pushy " to get the fair shake for our kids....I have had to fight the school for Ty's sake...He is now being put on the 504 government program....for fairness on the part of chronically ill kids...Talk to your school and fight for this...you can have it wave absent problems and the teachers by law have to give a little.... Hope this helps.. Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 1999 Report Share Posted October 5, 1999 Marcy, You should schedule a conference with everyone involved. My senior year in high school... I started out doing GREAT! Then, when I found out my liver enzymes were elevated... I guess I went into a depression. They scheduled a meeting, with all my teachers, and my mother. And, they tried to talk me into quitting school. Of course I didn't do it, and my mother fought for me. Don't back down! he has as much right to go to school as the other kids do! Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 1999 Report Share Posted October 5, 1999 Marcy, You should schedule a conference with everyone involved. My senior year in high school... I started out doing GREAT! Then, when I found out my liver enzymes were elevated... I guess I went into a depression. They scheduled a meeting, with all my teachers, and my mother. And, they tried to talk me into quitting school. Of course I didn't do it, and my mother fought for me. Don't back down! he has as much right to go to school as the other kids do! Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 1999 Report Share Posted October 6, 1999 Marcy, Believe me it is a fight with the school to get what you want but he will benefit more from being with his friends. This whole absent thing is crazy...1 day to make up work...Have they heart...and this is are caring teaching profession...HA...Make your voice heard...it is the only way. Luanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 1999 Report Share Posted October 6, 1999 Luanne.. How am I doing...well let's see i know I don't sleep enough and I know that I am living on coffee and nerves. I guess though all in all I am ok. I am still trying to do school full-time and work part-time and I do rescue work on a voluteer basis as well. I have the one unit in my hometown and another in the town next to us. I love doing the rescue but I have a problem with seeing young people smashed up in cars and having to pry them out so that we can tell their parents they are dead. And then I feel bad because everytime I see one I look at them and wonder if maybe their liver is still intact and maybe usuable to help someone that needs one. Seems pretty cold to me to be sizing up a person who just died for a possible donor. I do know that needs to be in school. He has told me himself that he wants to be there and hates that his teachers get on his case everytime that he misses. I was told that if I didn't call him in in the morning when he didn't go and then follow up with a note explaining exactly why he was out then he would not be eligible to make up the work. Also they said that he has exactly one night to catch it all up. I can't see how this is beneficial to anyone. cannot got o school all day and then come home and do 3-4 hours of homework. He gets so tired when he does that that he ends up sick all over again. I am going to check into the leagal aspects of all of this. If they think he needs to stay home then they had better have some really good data to support the fact that it is best for him and they will provide a tutor or you al will be hearing about me in the news! I will not let them do this. I am goingto call the state today and ask for an advocate for us and get things rolling. We are in the process of scheduling another ERCP for at the end of the month and I am hoping that we have a few more answers and weapons to use against this disease after that. I know is progressing pretty quickly right now and hope that we can find the right treatments to slow it back down for awhile. Some of the work I do is in computers. Mainly web page design and customer support. I have been tossing around ideas for doing a PSC web page for the group and am wondering what everyone thinks of that. I think I do a fairly decent job and would love to hear suggestions and feed back on that. Sorry that this was such a lenghthy one. Hugs, Marcy Re: LFT's > Marcy... > Hi...how you doing?...As a mom we are dealt with a lot that we are not really > prepared for...such as school....Ty was on home bound for 7 months in his > freshman yr....this was before his PSC and AIH were even diagnosed...He was > home because of his Rhuematoid Arthritis...couldn't walk...It was a very > tough time...He's back in school now and emotionally he is doing > better....They need to be with their friends....doing all the normal stuff > for as much of their day as possible....then the other stuff...hosp > visits..lab work...tests etc...won't seem like they consume their entire > life...The teachers wil just have to learn to deal..and unfortunately we as > the mom have to become " pushy " to get the fair shake for our kids....I have > had to fight the school for Ty's sake...He is now being put on the 504 > government program....for fairness on the part of chronically ill kids...Talk > to your school and fight for this...you can have it wave absent problems and > the teachers by law have to give a little.... > Hope this helps.. > Luanne Ty's mom > > ------------------------------------------------------------------------ > > eGroups.com home: /group/ > - Simplifying group communications > > > > > Quote Link to comment Share on other sites More sharing options...
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