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General Discussions Discuss MJ and Zoe (niece) update.... in the Community Center forums; Hmmm, thought I posted this already, but it isn't showing up... Well, after such a great weekend it was back to the real world hard! Got the news that they ...
  1. #1
    MommytoMJM's Avatar
    MommytoMJM is offline DisneyWorldTrivia Mod - Living Disney as a Lifestyle
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    MJ and Zoe (niece) update....

    Hmmm, thought I posted this already, but it isn't showing up...

    Well, after such a great weekend it was back to the real world hard!

    Got the news that they can no longer wait to do Zoe's transfusion, it will happen in utero at 6 am on Wednesday (tomorrow) She may require several transfusions before she is born, could still have major problmes and will probably be born prematurely so they can help her better I hope to be able to go up and meet her in November (she will probably be born in October)

    MJ isn't doing so well on her new sleeping meds, it knocks her out fast, but she doesn't stay asleep so they are upping her dose (she has to stay asleep a certain number of hours to get her food compliment each night) The NP said it could take several more times of upping it to get it to the right dose, apparently a lot of autistic kids are resistant to these types of meds. We also are supposed to add melatonin to the mix, where I am going to find that without corn I don't know....sigh. They will be starting her on Trileptal for her seizures since that can be compounded without corn. Her MRI and EEG can't be done until Sept 30th (or later depending on the EEG dept, sigh) What a pain in the neck. Waiting is the worst part I think.

    One thing I have noticed is that it is a lot easier to explain her behavior to others now. When I used to tell them she had Fetal Alcohol Syndrome (which she still does) they looked at me with a blank look, but "She has autism" seems to get through to more people....so I guess that is better.

    Anyway, that is the update. Thanks for your prayers, thoughts and love!
    Bonny June, Homeschooler, Webmaster and SNK/Adoption Advocate~~Marjorie June Mailani Adopted SNK, Disney Fanatic, Joyous, Cheerful, Incredible Kid~~Andrew, Cast Member, Disney Reservations Center~~Heart Mom to Cody (adoption loss 10-00)
    (linkie fixed...heh heh, thanks Val!)

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    rvastro is offline C-Ticket Holder
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    Hang in there! Things will work out and all will be well!

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    Hope all went with well Zoe today, will be waiting to hear the update.

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    MommytoMJM's Avatar
    MommytoMJM is offline DisneyWorldTrivia Mod - Living Disney as a Lifestyle
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    Quote Originally Posted by disneydreamer98
    Hope all went with well Zoe today, will be waiting to hear the update.
    I am still waiting to hear from my mom, I hope that no news is good news....
    Bonny June, Homeschooler, Webmaster and SNK/Adoption Advocate~~Marjorie June Mailani Adopted SNK, Disney Fanatic, Joyous, Cheerful, Incredible Kid~~Andrew, Cast Member, Disney Reservations Center~~Heart Mom to Cody (adoption loss 10-00)
    (linkie fixed...heh heh, thanks Val!)

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    zcook9's Avatar
    zcook9 is offline Not close enough to the magic!
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    Quote Originally Posted by MommytoMJM
    One thing I have noticed is that it is a lot easier to explain her behavior to others now. When I used to tell them she had Fetal Alcohol Syndrome (which she still does) they looked at me with a blank look, but "She has autism" seems to get through to more people....so I guess that is better.

    Anyway, that is the update. Thanks for your prayers, thoughts and love!
    When I mention that Joshua is autistic, people don't belive me and say that he must have been misdiagnosed. I think that one of the problems is... belive it or not, the media, because any show, i.e. Dateline, ect... that I have ever seen, they only talk of the sever cases of autisum. People need to get ALL of the info...

    Okay, if I go on any more...

    I'm getting off my soap box now .
    Laura
    DISNEY SCRAPPER

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    Quote Originally Posted by zcook9
    When I mention that Joshua is autistic, people don't belive me and say that he must have been misdiagnosed. I think that one of the problems is... belive it or not, the media, because any show, i.e. Dateline, ect... that I have ever seen, they only talk of the sever cases of autisum. People need to get ALL of the info...

    Okay, if I go on any more...

    I'm getting off my soap box now .
    I hear ya...I was explaining the same thing to Bonny. Dr's have told her before that MJ is too social to be autistic. There are all different levels....not all Dr's know everything.

    Bonny, I will keep my fingers crossed that the no news is good news. Let us know once you hear.

  7. #7
    PumpkinJack81's Avatar
    PumpkinJack81 is offline Some say to survive it you need to be as a mad as a hatter...
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    You're still in my prayers Bonny! Keep us posted. And in the meantime... Here's wishing you lots of and . Hang in there!
    ~Bobby Jack

    When you hear the knell of a requiem bell weird glows gleam where spirits dwell
    Restless bones etherealize rise as spooks of every size
    Grim grinning ghosts come out to socialize!





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    GaRain's Avatar
    GaRain is offline I love a guy who can make me laugh!
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    The thing with being informed is that you think you are, but if you read into more yourself, you find so much more than you thought.

    For example, my uncle has Parkinson's. When I described his symptoms, people think he has something else. He has parts of his body that are basically frozen. Parkinson's effects a certain chemical that your brain produces that deals with muscle control. So you have 2 basic types of muscle control loss - the one where you constantly shake (ie: Michael J Fox or Ali) and the one where your muscles freeze up on you - like my uncle.
    It makes life a little more difficult, but you learn to deal with it and you grow and move on.

    I think that you have handled all that life has dealt you with such class and dignity and love. I send you many many thoughts and prayers with all the fairy dust you can handle!!!

    Lara

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