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Thread: mitrofanoff stoma and pregnancy

  1. #21
    Wow. You have certainly had a change in circumstance since you posted last about having HSP and not SP. It is also amazing a genetics counselor said it is not hereditary as you wrote more than once you have HSP as a result of both of your parents being carriers/having it. You had already had genetic testing.

    Your. parents. each. have. the. HSP. trait. according. to what. you. wrote. That is heredity.

    Now you want to say your chance of passing it on is slim. If there is a chance at all (and I believe it is far greater than what you consider to be "slim"), why would you? You have more rights than an innocent child? You want to play roulette with another human being? You are obviously willing to put a little baby up for paralysis just because you have this thing about wanting to have babies just like you.

    You did not just have one pretend, paralyzed baby. You gave yourself two.

    Instead of yelling at us Internet style, can you understand why there would be concerns about you wanting to buy sperm to have a baby when you long fantasized openly about little, paralyzed, girl babies "just like Mommy"? Given the length of time you played out your fantasy in public, a couple of counseling sessons would not cut it for any sort of "cure" for you.

    How did you pay for the genetic counseling? How will you pay for the sperm bank?

    Are you self-supporting financially? Can you handle your own care now? Are you eating or still being tube fed? Deliberately attempting pregnancy while being tube feed will not ensure proper nutrition for a growing fetus. You have had problem after problem of your own due to gastroparesis.

    After surgery you have been in nursing homes. That's not a damning thing by itself. It does speak to ability to self-care.

    Have you ever worked full-time, 40 hours a week, paid all your own bills, kept your own place, shopped for and cooked your own meals, done your own laundry, etc.? Maybe you have. If you have, you know that life for one as a dis individual is expensive. It's expensive financially, physically, in terms of time, emotionally. Co-pays, health insurance premiums, home owner's insurance, it all gets expensive.

    As for those books, the books you have bought, read and reviewed for years have always had to do with lactation (you seem breast feeding obssessed and have for years, not just now when you say you have some fluky medication side effect causing milk production), pregnancies you did not have, products you were not even using, but claimed to have intimate knowledge of. Your wish lists for years have included these products and books, too.

    If you are going to open a store in a year with friends, why the medical coding degree? I'm just curious as that degree is very specific in scope and knowledge.

    I did not come here to cause you to have a bad day. I replied to this thread because you scare me to death when you start talking about having a child using your own egg. Suddenly you say your circumstances have changed. It's no longer HSP, but is now SP. This is illogical because you have said more than once it as a result of your parents carrying the genetic material for it. That is heredity. They each had the HSP trait and gave it to you. You did not get it by some fall out of the sky fluke.

    What you wrote WHEN YELLING ABOVE is illogical at best.

    I'm not buying the sudden reversal of you no longer have HSP after there was previous testing and each of your parents carried the trait.

    Do not be selfish enough to have a child with a dis just so you have one of your own "just like Mommy." God and the Holy Spirit you wrote about above might forgive you for it, but that child may never.
    Last edited by LaMemChose; 05-27-2010 at 09:22 PM. Reason: typo, clarification

  2. #22
    Sorry you take it as harassment, Jessie. It's not all about you, which is pretty much my point to begin with. I'm glad you are down with the Lord and I devoutly hope He will guide you in the right direction. That woman did not give me the impression that you had suddenly come clean, she sounded much more angry than that. She was furious and considering calling CFS. This is why I wondered what had happened.

    I'm glad you are close with your family. Sorry to hear your sis's boyfriend had to be incarcerated. I'm also glad you are bettering your life, that is something to be truly proud of.

    What you take as harassment might be voices pleading with you to think long and hard-BEYOND YOUR LIFELONG DREAM TO RAISE A CHILD. Children are autonomous beings, not dream fulfillment. It is that dream that prompted this discussion to begin with, girl. I'm delighted you get to help with your niece. Aren't there any little boys around you could help with, too?

    Hate me all you want. I've raised 2 boys and I know what motherhood is. It is far from a dream, especially when adolescence happens. Having been sucked into this drama I think I have to speak out. I do truly wish you the best with whatever God has planned for your future.
    Last edited by betheny; 05-27-2010 at 09:44 PM.

  3. #23
    Quote Originally Posted by jessie.gray View Post
    Okay, you are not listening to me at all! The reason that lady from the other site I was on told you all of the lying I did was because I finally had had enough of living that lie and TOLD THE TRUTH!!!!! I decided enough was enough and wanted to end all of that lying. Again, SINCE THEN I HAVE NOT LIED AT ALL, IN REAL LIFE AND ONLINE!!!!! If you have ever watched the show "The Way of the Master" on Daystar (with Kirk Cameron and Ray Comfort), you will know that it is a sin to lie, so I don't lie anymore now that I have given my life to the Lord and allowed the Holy Spirit to enter my life. I have moved on and am living a new life, and have no plans to go back to the old life.

    I just got off the phone with my mother and she told me to tell all of you, "Believe what you want, but we have medical records that prove I had counceling, genetic testing, and that the doctors don't believe that my disorder is hereditary to the sense that it would be passed on to another child". Besides, according to my neurologist, both the MOM and the DAD have to have the gene to pass on spastic paraparesis. If only 1 of the two has the gene, it can't be passed on. That's what makes it so rare, according to him. And my neurologist is a well-known doctor in Western WA and has had over 30 years experience in neurology.
    I am extremely healthy now, have no plans for future surgery, and my doctors are thrilled that I am walking now. I am also one of the few that is trying to GET OFF of Social Security Disability and live a normal life. I am getting sick of living off the government and have been encouraged by my case worker and worksource social worker to go back to college to get a degree. This way, I will have a job eventually. Even Social Security is helping me with this.
    My mom and I have been helping my sister take care of her 1 year old daughter since my sisters boyfriend got arrested for abuse (and my sis had to move back in with my parents), so I know how it would be taking care of an infant and toddler. I take care of my neice 3 times a week and have had no problems so far, even when Bri is crying constantly or won't take a nap. We get through it just fine.

    Now, I may have a husband by the time I graduate from college and I may not, but that won't stop me from fulfilling my dream of raising a child, wheather it comes from me or through adoption. Right now, my concentration is on college. I just wanted to ask those questions, so I'd know for later on.

    Thank you for the two people who ACUTALLY replied to my post and answered my questions without harassing me.

    God Bless You

    Jessie

    You posted this while I wrote what I did above.

    I'm not too concerned about what Kirk Cameron is or isn't saying. That is not important to this conversation, IMO.

    Jessie, you have said for years you have HSP, you got it from both parents, etc. We know the past as do you.

    Then you posted what you did this week about pregnancy after all your posts about HSP, babies, lactation, etc. and it was, "Oh, no ..."

    I still have enormous concerns for a potential baby and for you.

    If one neurologist told you something far different from what any other neuro has said, get it checked with an HSP expert. You do not want to chance something as important as a child to a doctor's error in info to you.

    What odds of having a child with HSP did your doctor give to you? What constitutes slim odds?

    How is it not HSP if it can be passed to a child?

    I'm asking because I do not know.

    Before you think you have the baby biz licked, babysitting several times a week is far different than 24 hour care of a newborn.

    It's wonderful you are going to school, looking to get a degree and go to work. It's also great you are no longer in a chair. That is amazingly good stuff.

    Focus on school and work, on getting and being as physically and as emotionally healthy as you can. Get to an HSP expert, not a neuro, but a top expert in the field before you even think of having a baby because what you are posting now contradicts all you have previously said.

  4. #24
    I really hope that someone who is more computer savvy than I am can do some investigating into this person. If she/he is found to have criminal motivations, I sincerely hope that they are banned from this community!
    Last edited by Danine; 05-28-2010 at 12:25 AM. Reason: *Edited to remove potentially inflamatory language.*
    "The truth will set you free. But first, it will piss you off." -Gloria Steinem

  5. #25
    I know someone who mailed her a wheelchair yrs ago.

  6. #26
    Senior Member jessie.gray's Avatar
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    Quote Originally Posted by LaMemChose View Post
    Wow. You have certainly had a change in circumstance since you posted last about having HSP and not SP. It is also amazing a genetics counselor said it is not hereditary as you wrote more than once you have HSP as a result of both of your parents being carriers/having it. You had already had genetic testing.

    Your. parents. each. have. the. HSP. trait. according. to what. you. wrote. That is heredity.

    Now you want to say your chance of passing it on is slim. If there is a chance at all (and I believe it is far greater than what you consider to be "slim"), why would you? You have more rights than an innocent child? You want to play roulette with another human being? You are obviously willing to put a little baby up for paralysis just because you have this thing about wanting to have babies just like you.

    You did not just have one pretend, paralyzed baby. You gave yourself two.

    Instead of yelling at us Internet style, can you understand why there would be concerns about you wanting to buy sperm to have a baby when you long fantasized openly about little, paralyzed, girl babies "just like Mommy"? Given the length of time you played out your fantasy in public, a couple of counseling sessons would not cut it for any sort of "cure" for you.

    How did you pay for the genetic counseling? How will you pay for the sperm bank?

    Are you self-supporting financially? Can you handle your own care now? Are you eating or still being tube fed? Deliberately attempting pregnancy while being tube feed will not ensure proper nutrition for a growing fetus. You have had problem after problem of your own due to gastroparesis.

    After surgery you have been in nursing homes. That's not a damning thing by itself. It does speak to ability to self-care.

    Have you ever worked full-time, 40 hours a week, paid all your own bills, kept your own place, shopped for and cooked your own meals, done your own laundry, etc.? Maybe you have. If you have, you know that life for one as a dis individual is expensive. It's expensive financially, physically, in terms of time, emotionally. Co-pays, health insurance premiums, home owner's insurance, it all gets expensive.

    As for those books, the books you have bought, read and reviewed for years have always had to do with lactation (you seem breast feeding obssessed and have for years, not just now when you say you have some fluky medication side effect causing milk production), pregnancies you did not have, products you were not even using, but claimed to have intimate knowledge of. Your wish lists for years have included these products and books, too.

    If you are going to open a store in a year with friends, why the medical coding degree? I'm just curious as that degree is very specific in scope and knowledge.

    I did not come here to cause you to have a bad day. I replied to this thread because you scare me to death when you start talking about having a child using your own egg. Suddenly you say your circumstances have changed. It's no longer HSP, but is now SP. This is illogical because you have said more than once it as a result of your parents carrying the genetic material for it. That is heredity. They each had the HSP trait and gave it to you. You did not get it by some fall out of the sky fluke.

    What you wrote WHEN YELLING ABOVE is illogical at best.

    I'm not buying the sudden reversal of you no longer have HSP after there was previous testing and each of your parents carried the trait.

    Do not be selfish enough to have a child with a dis just so you have one of your own "just like Mommy." God and the Holy Spirit you wrote about above might forgive you for it, but that child may never.
    I am just going by what the genetic testing and my neurologist told me.
    As far as counceling, I have been in counceling through a Christian counceling agency for 2 years (not just a couple sessions, like you think). It has helped me tremendously.

    If you have looked on my wish lists for books on Amazon.com, you would have seen that there is hardly any books on breastfeeding. In fact, most of the books I have on there right now are natural healing/health books for women. The shop my friends and I are going to open is by women and for women, so we have found several books to offer in there; from bellydancing to homeopathic medicine. We just have a lot on there on all sorts of topics, so we have many titles to choose from. The religious book and CD lists are lists of books/CD's that our church wants in our library, as well as some titles I want for my own bookcases. I keep the lists on there for reference and copy the lists off every month to use during our Ad Board meetings and UMW meetings.

    Also, I do live on my own, pay my own bills, pick out and pay for my own groceries, make some of my own meals, and do some of my own laundry (I fold it up while the caregiver washes/dries). I have done all of this since 2002, when I moved out of my parents house. I am the only one of us 3 kids that has never moved back home again, and my mom and stepdad are very proud of me. I budget everything to a tee, so I know how much I have left over for the month. I only allow myself $25.00 spending money for the month (the rest stays in the bank for stuff like extra groceries, laundry money, bus fare, ect.). There are only a few things I need help with: getting dressed from the waist down, doing my medicines, and washing my back/lower legs in the shower. Everything else, I can pretty much do on my own.
    BTW, the only reason I was in a nursing home after surgery is because I DID NOT have caregivers at the time (I didn't need them back then, even while on my own), and the state said I needed to recover there because of that. Plus, my parents were on vacation at the time, so I couldn't recover at their house.

    I only use the feeding tube now for medications, so they get absorbed easier, since they are bypassing my stomach completely. I also use the tube if I feel dehydrated to get extra fluids in me, so I don't get so dehydrated that I have to go to the ER. I don't need the enteral formula anymore and haven't for the past 2 months. I still get nausea every once in a while from the gastroparesis, but I found that acupressure bracelets help with this. Reiki also helps. My caregiver is a reiki master and does reiki sessions on me once a month and is also helping me with getting an attunement for Level 1 Reiki, so I can do the same thing (and yes, Christians can practice reiki, in case you are wondering).

    The reason my friends and I are opening a natural health/healing store next year is because that has been our dream for years to have one where we live and open more people up to alternative medicine. My best friend and I still plan on using our medical coding/billing degrees to work at home (we are going to the same college and for the same degree). The store is just another thing we want to do as well. There is nothing wrong with that, in my opinion. We are all looking forward to it.

    Now, again, I just wanted to ask the mitrofanoff questions just to get some advice on that and pregnancy because I couldn't find any answers elsewhere. It doesn't mean I will become pregnant. I have left the door to adoption open, so it is in my right to adopt a child.

    Jessie
    Last edited by jessie.gray; 05-28-2010 at 10:02 PM.

  7. #27
    Senior Member jessie.gray's Avatar
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    Quote Originally Posted by Danine View Post
    I really hope that someone who is more computer savvy than I am can do some investigating into this person. If she/he is found to have criminal motivations, I sincerely hope that they are banned from this community!
    My mom said for you to go ahead and check, but you will find NO criminal record of me at all. I have never been arrested or had any court stuff (unless you count jury duty) in my life. Also, I still use a manual wheelchair outdoors, because of spasticity in my legs. But, I am happy that I can use a rolling walker indoors. My case worker, Social Security, my 4 doctors and several friends and family can vouge that I still need to use a wheelchair.

    I am not a mental case, like all of you think I am. I just made a mistake a couple years ago and I did the right thing by telling the truth. I have moved on with my life and so has my family.

    Now, I don't want to argue anymore with all of you, please. Otherwise, it will stress me out enough that I won't be able to concentrate on my schoolwork. Thank you.

    Jessie
    Last edited by jessie.gray; 05-28-2010 at 10:05 PM.

  8. #28
    Jessie-
    Although you think that you are being harassed, I do believe that most of the people who wrote to you are truly concerned for you and your potential child. I do hope that they respect your request and let it go at this point. However, one thing that I think you should think about when you have the time, is why did people who know your past get so concerned over your question?
    CKF

  9. #29
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    Jessie, I've never heard of your past until now so I'm not delving into it. There are people here that are giving you good advice but you're not getting it. I know the longing to want a child but it is one of those easier said than done things. I could go on & on about the decisions I've made but no way in hell COULD I bring a disabled child into this world, this I know. Yes, we're capable of having good lives but it's not a even a POSSIBILITY I want to take a chance of inflicting on another human being. If you must, consider adoption. Please don't take chances with an unborn baby that if is born disabled will reget the day they were born many times over. I truly mean this nicely as I understand wanting a child but I know I want one healthy as a horse from the start. I would cry my eyes out living with the fact I passed the torture of sci onto a child I loved...and your sci is way more torturous than mine.

    I wouldn't think it would be a good idea on your body either, with your appliances & surgeries you've had. I know I've opted out of physically having a child for several reasons but my urostomy being one.

  10. #30
    I am moving this to the Family forum. The issue has little to do with the Mitrofanoff, and much to do with the decision to have a child or not with a significant risk of passing on a genetic disorder. The issues of veracity in past history with these forums may also require a movement to the Members Only forum which I will discuss with other moderators and Dr. Young.

    (KLD)

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