Discussion in 'General Parenting' started by Jena, Jan 15, 2011.

  1. Jena

    Jena New Member


    sooo difficult child's digestive system is now reactivating itself again! been shut down for like 3 weeks. her levels are improving and some slight improvement with her heart!

    she has a tiny bit of color in her cheeks. :) baby steps!!! yay!!!!

    she's still in wheelchair, bedrest etc. yet i know in my heart by next week that'll taper off too. shes tough. tonite we go up to 7.5 mg. on zyprexa

    keep your fingers crossed, rattle those beads dance a little........ praying this works. that by end of week next week she says those magical words i'm a little hungry!!
  2. HaoZi

    HaoZi Guest

    My heart leapt in happiness when I saw the thread title. :likeit:
  3. Wiped Out

    Wiped Out Well-Known Member Staff Member

    Baby steps are great!
  4. Andy

    Andy Active Member

  5. DDD

    DDD Well-Known Member

    Awesome! I'm so happy to hear the good news and have my fingers crossed things progress rapidly and healthily. DDD
  6. Jena

    Jena New Member

    me 2. we sadly found out today that they do the same thing as last hospital. if difficult child doesnt' progress in time towards food they'll cut me out of picture just like other place. husband and i are not happy about this. same old push her into a corner she'll stay there indefinetley due to her defiance level.
  7. HaoZi

    HaoZi Guest

    I'll take it you've expressed your concerns and disappointment in the previous hospital's methods (to put it lightly). Not to mention the absolute failure of such methods with her.
  8. Jena

    Jena New Member

    yes they said we're not them. we're taking the time calmly to get to know her, it isnt' something we want to do, we wont' do it without your ok if the time comes. yet we have to find something to get her in position if she doesnt' put herself there.
  9. susiestar

    susiestar Roll With It

    Well, you now know hte warning signs. She also has the feeding tube so she will have the strength to go through some of this without damaging her body. They also will most likely do this as a last resort. There is something to be said for pushing her into becoming less dependent on you, though it isn't going to happen easily or with-o a HUGE fight. This is a bridge that you are not ready to cross yet, and that you need to not worry about until it needs to be crossed. She is making progress now, that is awesome and important!! They will have to take thing sslower with her than with others, and you may need to psuh htem on this a bit. If she can trust them and fight through it to cooperate with them, if they can see the anxiety and work on that, then you may never need to do the separation.

    Whatever they do, it cannot be worse than what was going on at home. This is a pretty extreme problem and the long term effects are extreme. This is also supposed to be an excellent program that has helped many many kids. Do they have a psychiatrist working with her to assess her other mental illness issues? with-o that they won't get far. If a psychiatrist hasn't come in with experience in biopolar and anxiety and toher issues, then start asking for one NOW. That person needs to get to know her also and will need time to see her reactions to medications (which are pretty atypical as you know but few docs will believe if they don't see it). Get the psychiatrist to work on medications while they work on other stuff and maybe it won't come to the point of needing the extremes.

    Also let them know that she is incredibly stubborn. This is one thing that they need you to leave them alone with her for an afternoon a couple of times a week for. Otherwise they won't really know because you are able to get her to do things they won't be able to and they won't beleive that a kid can be that resistant and determined. I have been there done that with Wiz - docs would swear that no oe would do what he would do, and until I let them see him with-o me and try to deal with-it with-o me they didn't believe a word I said.

    LOTS of parents say their kids are stubborn, determined, won't do this and can't do that. So the staff hears it all the time and then they get the kids to cooperate anyway. They haven't seen many with the complete dedication to a whim that our kids have - nad the extreme willingness to cut their noses off to spite their faces. It is one reason I think you should take an afternoon and let them try to get her to do something she doesn't want to do - with-o you. Esp fi she is grumpy that day. It sounds mean and feels difficult as it is not something we do as parents of difficult children. Going ahead and doing it is one of the few ways to break in the docs so that they really know what they are working with. It took 2 days in the psychiatric hospital with Wiz for 1 nurse to "get it" with him. she knew the honeymoon was happening and would be loooooong, she knew we were telling the truth because she had seen a few like him and something in her saw it in him. IT took over a month for the rest of them to "get it" and even then it took me setting him off. THEN they thought he needed to stay when they were scheduling his dsicharge for 2 days after the therapy session where I set him off on purpose. Until then the psychiatrist (who saw him for maybe 30 min a week stretched over 5 days) didn't know whyhe was there, thought that I needed to be in a psychiatric hospital and my poor kid needed to be saved from me. Quack. Quack. man was a freakin' duck he was such a quack. but the therapist was great when she saw the problems and the nurse was a huge help.

    So I know what it is like nad what they think. I alsoknow they need to SEE her freak out on you with the unending rages, fears, etc... before they will be abel to help you. They don't have a clue how sick she is and how strong her will is - they are used to dealing with difficult children that are more like pcs than most of us think of difficult children as. If that makes any sense.

    I am so thrilled she is making progress!! I also think this is going to take some planning on your part because if it follows their usual plans then it won't be enough for her and you will ned up back home iwth the same problem coming back in a few months. So use that brain and the creativity that makes you a great Warrior Mom - and let THEM deal with her on some real difficult child issues/moments so that they are more able to really helpher on the important stuff.
  10. pepperidge

    pepperidge New Member


    It sounds likes they are really attending to her medical needs very systematically and thoroughly. Don't go down the path of what ifs right now, she is making progress. You are working on you and getting some strength and perspective and I am sure they have lots of tricks up their sleeves before they go to the wall. Keep focused on the baby steps each day. It has got to feel good to see her getting nutrition and to realize how smart and courageous you were to get on the plane and get her help. Hope you are finding some destressing things to do--tv, books, bulbblebaths whatever. In a weeks time you will probably feel like an oldtimer and know you way around. Sounds like a lot has been accomplished in a week. Yeah!!! good work Mom.
  11. Jena

    Jena New Member

    i'm not battling them at all. i want them on my side hands down. as far as other issues go they aren't pyschiatrists their medical doctor's which is why i went to the place i did first. yet i like the way they talk and rationalize they dont' look to tag it all on her disorders. they look from a different behavioral perspective on things. which for once is nice.

    so we have been working on detatching her since day one and with her in this condition. i prompted it to be honest. i could of slept here yet each night i went thru her throwing a fit and i left her. she has to learn how to self sooth herself at some point and to get that even if she's alone shes' ok. hard lesson to learn for her especially when she's at her weakest point. ea. night i walked out i cried a little in plot quetioned my motives and had to get myself ok again and understand my mission.

    the doctor said write down 7 things you would like to see changed besides her eating food. so we did. i really like the doctors' alot here. the day my tire got a flat they brought the therapy dog by the hospital for difficult child knowing i was stuck in a street, than when exh started doing his pyscho **** they simply handled it and informed me after. they have an amazing balance of listening and respecting me the mom and also being aggressive and taking charge when they need to. talking to both of her doctor's is like talking to ppl i've known my entire life.

    wish i could take them home with-me.
  12. graceupongrace

    graceupongrace New Member

    How cool to see some progress! So glad to see you have some confidence in the docs.

    Like all things in dealing with a difficult child, one day at a time. One hour at a time if necessary.

  13. Bunny

    Bunny Guest

    YAY!! Improvement, even in little baby steps, is a GREAT thing.

  14. HaoZi

    HaoZi Guest

    So far it's sounding like a great place for her, and by extension, for you and the family.
  15. ML

    ML Guest

    Great news. I'm happy to read this, Jena.
  16. Jena

    Jena New Member

    for me and the family?? LOL i am the family...... :)

    everyone else has family members, grandparents flying out etc. to help out. me umm i get from mom no i cant' handle that long of a flight etc. money etc. yea yea yea

    i have to specially coordinate how to wash our underwear lol...... pathetic
  17. HaoZi

    HaoZi Guest

    I mean when she gets this down it'll help you, husband, and easy child, as well. I'm a single mom 800+ miles away from nearest family, that is a stress I do know quite well.
  18. Jena

    Jena New Member

    yea i know you do. funny thing is i like that my family isn't near where we live bigtime. :) a buffer with my mom is always good...... yet in this predicament some help would be nice.
  19. shellyd67

    shellyd67 Active Member

    Jena, you made my day ! I hope she continues to improve and you do hear those words, "Mom I'm hungry !" :Grouphug: