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  1. #11

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    Thank you Rocketcitymama, I went on your blog and read through it. Wow, such an amazing journey with such a beautiful girl. How is she doing now? It sounds like she was thriving in your blog. Your journey started out so crazy. I guess I'm grateful that we found out 1/2 way through my pregnancy so we have time to process everything and prepare. Although it has been so emotional and hard, I can't imagine finding out just after birth and having to process while recovering

    I hate the waiting and not knowing my baby's prognosis aspect of this condition. I've found some cases of myelocystocele on here and the stories seem promising, so I'm hopeful. I just don't know for sure if our baby even has myelocystocele. The other neurosurgeon seems to believe it is a meningocele, with no neural involvement but that seems too good to be true. We have about 2 more months or so before we'll know anything.

  2. #12

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    Dodger, thanks for responding. You said it perfectly and I appreciate your understanding. I'm sure it's hard having us new moms come on here and freak out.

  3. #13
    Join Date
    Jan 2008
    Location
    South Africa
    Posts
    6,121

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    Please freak out all you need, that's what we're here for.
    Roger
    Sumus semper in excretum sed alta variat!

  4. #14
    Join Date
    May 2010
    Location
    Alabama
    Posts
    198

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    Quote Originally Posted by Jelly83 View Post
    Thank you Rocketcitymama, I went on your blog and read through it. Wow, such an amazing journey with such a beautiful girl. How is she doing now? It sounds like she was thriving in your blog. Your journey started out so crazy. I guess I'm grateful that we found out 1/2 way through my pregnancy so we have time to process everything and prepare. Although it has been so emotional and hard, I can't imagine finding out just after birth and having to process while recovering

    I hate the waiting and not knowing my baby's prognosis aspect of this condition. I've found some cases of myelocystocele on here and the stories seem promising, so I'm hopeful. I just don't know for sure if our baby even has myelocystocele. The other neurosurgeon seems to believe it is a meningocele, with no neural involvement but that seems too good to be true. We have about 2 more months or so before we'll know anything.
    You are welcome, it has been a crazy ride there in the beginning but right now things are going very well, hence the lack of posts on the blog LOL I should continue to blog so I can stay updated on there, life is just so busy these days between all 3 kids. She is still wearing AFOs and we are cathing every 4-6 hours depending on the day and fluid intake, we are working on a bowel regiment. Other than those things, she's a typical little girl. We attend a dance class for special needs students, and she absolutely loves it. We do homeschool right now, because that is what is best for her, but it may change down the road.

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    Truly the worst part is wait and see what happens for us. I mean she could need another surgery, but she may not. Due to the lipoma she does have a higher chance of re-tethering, but we just take it day by day and enjoy life. Enjoy your pregnancy the best you can, I guess that was the perk of not knowing, not as much daily stress of wondering the what ifs. We are here for you!
    Frances - Mom to 3 Lovely Girls
    Our Spina Bifida Journey

  5. #15

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    She is absolutely beautiful! I'm glad to see/hear that life is more ordinary, despite everything going on. I have older girls, as well, and one of my biggest fears in the beginning was how all this will affect them. I, myself, grew up with a sibling that had significant medical issues so I know how hard it can be. My brother is doing well now and I wouldn't trade him for the world, so I know my girls will be fine too. It is hard to look at this from the parent perspective though. I want the best for ALL my kids and it hurts my heart knowing all that we will face as a family. One day at a time though. Your story and seeing how ok you are gives me hope that we, too, will be fine, so thank you for that.

  6. #16
    Join Date
    Jan 2008
    Location
    South Africa
    Posts
    6,121

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    Most sites and forums that deal with disability, and particularly in the case of children, tend to concentrate on the medical issues - they show the "worst case scenario". Medical professional also only see the kids when there is something wrong. Very few show or discuss the "normality" of everyday life.
    Take me for example - I'm 49 years old - except for routine checkups, I haven't seen a doctor (or nurse, therapist, etc) for an SB-related issue for about thirty years! My father sometimes says I am "boringly healthy". The biggest "SB-related" issue in my life right now is the high price of new tyres for my wheelchair!
    Roger
    Sumus semper in excretum sed alta variat!

  7. #17

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    I too have lipomyelomengingocele but was not diagnosed until 26 years old. I always had issues with what I thought was bladder control but it turned out to be overflow problems. Growing up in a family that didn't really go to doctors was the main reason I was never treated. If you have any particular questions feel free to ask. Life can still be as beautiful as we make it even with our SB. Good luck to you and keep us updated!


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