Guest guest Posted November 23, 2002 Report Share Posted November 23, 2002 , Cassie is doing much better this weekend. I found out about that urine test. I actulaly know just a little. But hie's looking to se if she's having a problem woth some other enzymes that could be causeing her pain when her levels aren't up. He's grasping at strws though. We also are going to put htis conistipation crap to rest. Starting Thanksgiving Night I give her the myralax ecery day. Then Suday night I give her an anema. Yeh! lucky me. then Monday morningthey are going to xray her intestins. I'm Glad to here that Jackie is eating. But sorry to hear she still hurts. Has she moved betyond mashed potoatoes. I know that food is a real sore spot wiith Cassie. Tonorrow is my son's 3rd birthday. I just finished making a ice cream cake that she can eat. orange sherbert, Vanilla waffers adn no fat vanilla ice cream. As for emotions I'm a mess. Between Cassie's CP, all the crpa from school and the pressures from work I wonder every morning if this is the day I Have my nervious breakdown. Both Mike and I are on zolft for depresssion. So i know where your coming form. We keep thinking thta we'd like to move somewhere else. some where tha schools are good, the Dr's are better and crime is low. Yeah I know, I'm in a fantisy land. Mike and I were talking last night and we don't remember when the last time we went out alone. Or had any real time for anything else. I spend alot of ti,e trying to find a resason for her CP then maybe we can figure out a way to get rid of the pain. I guess you could say I'm obsessed. I just keep have this dream that I'm 65 years old and she's still yelling doen the stairs to me " mom, I can't find anything to wear. I know that sounds kind of selfish but i want her to have her own life, just like you want for Jackie. I wish more people could understand what our children are going thru as well as their parents and families. I don't know about Jackie but, Cassie has a terrible gas problem, both ends. It seems that it has gotten even worse this last year and everyone from the kids to the teachers are giving her a hard time about it. So now I have another reason to fight to get her to school every day. That's about all for now, gotta go wrk on wrapping presents. God bless you all Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2002 Report Share Posted November 23, 2002 , Cassie is doing much better this weekend. I found out about that urine test. I actulaly know just a little. But hie's looking to se if she's having a problem woth some other enzymes that could be causeing her pain when her levels aren't up. He's grasping at strws though. We also are going to put htis conistipation crap to rest. Starting Thanksgiving Night I give her the myralax ecery day. Then Suday night I give her an anema. Yeh! lucky me. then Monday morningthey are going to xray her intestins. I'm Glad to here that Jackie is eating. But sorry to hear she still hurts. Has she moved betyond mashed potoatoes. I know that food is a real sore spot wiith Cassie. Tonorrow is my son's 3rd birthday. I just finished making a ice cream cake that she can eat. orange sherbert, Vanilla waffers adn no fat vanilla ice cream. As for emotions I'm a mess. Between Cassie's CP, all the crpa from school and the pressures from work I wonder every morning if this is the day I Have my nervious breakdown. Both Mike and I are on zolft for depresssion. So i know where your coming form. We keep thinking thta we'd like to move somewhere else. some where tha schools are good, the Dr's are better and crime is low. Yeah I know, I'm in a fantisy land. Mike and I were talking last night and we don't remember when the last time we went out alone. Or had any real time for anything else. I spend alot of ti,e trying to find a resason for her CP then maybe we can figure out a way to get rid of the pain. I guess you could say I'm obsessed. I just keep have this dream that I'm 65 years old and she's still yelling doen the stairs to me " mom, I can't find anything to wear. I know that sounds kind of selfish but i want her to have her own life, just like you want for Jackie. I wish more people could understand what our children are going thru as well as their parents and families. I don't know about Jackie but, Cassie has a terrible gas problem, both ends. It seems that it has gotten even worse this last year and everyone from the kids to the teachers are giving her a hard time about it. So now I have another reason to fight to get her to school every day. That's about all for now, gotta go wrk on wrapping presents. God bless you all Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2002 Report Share Posted November 23, 2002 Hey Patty, That cake you said you made for your son's 3rd birthday sounds yummy. We make stuff like that for special days so Jackie can eat the stuff too. Yes, Jackie is eating pretty normal for CP anyway, just still a little smaller amounts. I hope she continues doing at least okay till we get thru her ERCP. When you said you feel obsessed you sounded as if you were quoting what I have said to friends and family before. I feel that way too. I spend hours on this computer trying to understand. That is why I get irritated with nurses and doctors when they won't listen to me. I so know I am obsessed with pancreatitis...but I guess it is worth it for Jackie. My husband and I sound like your situation...we seem to never get any us time...I never get me time either...but it seems like it has always been that way with me, one thing or another. I hope you guys had a great birthday for your son today and everyone had a great time. Talk to ya soon, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2002 Report Share Posted November 23, 2002 Hey Patty, That cake you said you made for your son's 3rd birthday sounds yummy. We make stuff like that for special days so Jackie can eat the stuff too. Yes, Jackie is eating pretty normal for CP anyway, just still a little smaller amounts. I hope she continues doing at least okay till we get thru her ERCP. When you said you feel obsessed you sounded as if you were quoting what I have said to friends and family before. I feel that way too. I spend hours on this computer trying to understand. That is why I get irritated with nurses and doctors when they won't listen to me. I so know I am obsessed with pancreatitis...but I guess it is worth it for Jackie. My husband and I sound like your situation...we seem to never get any us time...I never get me time either...but it seems like it has always been that way with me, one thing or another. I hope you guys had a great birthday for your son today and everyone had a great time. Talk to ya soon, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2002 Report Share Posted December 18, 2002 Patty, I know what you are going through. I know you know this also. I just wanted you to hear that I am praying for you. Life has just been hard lately. It has been a hectic time getting back into the swing of things, since Jackie's hospital stay. She is feeling better but this week a touch worse. Up and down, I guess. I know what you mean about the pain medicines, don't feel like you will get an answer if you find a pain management doctor because we didn't. Aren't you near Peg and Brandan, she said his pain doc was great. Jackie's sucks, he doesn't want her on narcotics, I don't want her to be addicted but I don't want her suffering. She is taking half a pill here and there, trying to make them last, along with her ultram. I don't know where or what we will do, so I feel like you do. She is going to see a GI here in town that will see 13 yr old and up and I am hoping he will help. Most docs will want to continue with the pain docs but I am going to tell him there is no hope there and I am firing the pain doc. He may not want to be Jackie's GI after hearing that. But I refuse to continue to see a doctor that will not help her. About Cassie's school, stick to your guns and make them help her. If you are not able to homeschool, cuz some people can't then you will have to keep fighting. I know what you are going thru, cuz Jackie's GI wanted her in school, in gym class etc...she hurt so bad after the day was done. She would be so fatigued, wore out and just hurting horribly. Or would call for me to pick her up during the day. I finally made the decision to homeschool but it was a hard and scary one as I work 3rd shift. But Jackie really teaches herself, so it isn't hard for me. I know Cassie would need alot of attention and help...so it will be a difficult decision for you. If you cannot do it, then you have to keep up a good fight with the school. It will be so hard and a pain...I know, I did it for two years. The school board can be a pain in the...foot. I am thinking of you and praying for you. I am here for you...please email me if you need to talk. I can call you or you can call me, let me know in a private email. I wish we lived close together, then our girls would have each other to lean on with this school stuff, it is so hard for them. Talk to ya soon, Quote Link to comment Share on other sites More sharing options...
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