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Thread: My daughter Francesca

  1. #11
    Not sure where you are in MA, but this is available in the Boston area:

    http://sbagreaterne.org/

    They also support several on-line discussion, support, and education programs:

    http://sbagreaterne.org/programs-ser...ussion-groups/

    (KLD)

  2. #12
    Super Moderator Sue Pendleton's Avatar
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    I agree with everything our nurses have said. You really need a specialist in spina bfida for your daughter. Especially for both long term management of any shunting needed and to determine her level of injury neurologically. And yes, a good orthopedist to give her the best chance of growing with a straight spine which can effect so many other life systems.

    Congrats on a new child!
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  3. #13
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    canuck-From what I know, disabled kids are well mainstreamed here in the States.

    Sue-As I've mentioned, she slithers on the floor ATM, gets plenty of "tummy time". Will she ever walk?

  4. #14
    Senior Member canuck's Avatar
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    I was primarily thinking activities outside of school.

  5. #15
    I have a daughter with sb/hydro, she is close to graduating from college, drives, lives in the dorm etc. Your daughter is just a baby, enjoy her and take one step at the time. At this point finding a good team of doctors is very important: good pediatric neurosurgeon, urologist, ortho. Try to find sbaa chapter close to you - other parents are extermely helpful. SBAA has something called " education days" - mini, one day conferences on spina bifida. You can find one close to you - it will be helpful too. I think next year they will have a regular sb conference . This conferences are about 4 days long and give tremendous amount of information and contacts. On sbaa site there is also something called sb university- a series on on-line videos on different aspects of spina bifida.
    When she gets a bit older watch out for learning problems related for hydrocephalus - it influences things such as organizational skills or time management so paying attention to that when a kid is little will help her in the future. Also - enroll her in adaptive sports as soon as get gets old enough ( around 5). Kids really love it and learn a lot of independence though programs like that.
    Please aks if you have any questions.
    Good luck and have fun with your new baby!
    M

  6. #16
    I just checked sbaa education days and the closest to you appars to be in John Hopkins in Baltimore on June 1

  7. #17
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    I do not have SB but my disability occurred at birth and is significant. The biggest piece of advice I would give any parent with a child who has a physical disability is to try not to treat them differently. My mother never allowed me to use my disability as an excuse for anything.

    For example, I remember one time in HS I was getting ready and had some bowel difficulties. As a result I missed the bus. My mother drove me to school however, she refused to write me a late pass. Her response was I needed to prepare for these types of "hiccups" in life.

    Because of her hard nose ways I am a highly educated, mature, and successful individual. A few years back she and I were discussing this and she told me it was extremely hard for her to not give in and run to my aid every time I ran into hardships. I thank her tremendously for being so strong.

    E
    There is no such thing as a stupid question but there sure are a lot of inquisitive idiots. -modified from despair.com

  8. #18
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    kasia-What lesion is your DD? Where does her sensation end?
    What's a good sport for Francesca to get into, considering her lesion?
    Last edited by etv78; 05-16-2013 at 12:18 AM.

  9. #19
    Super Moderator Sue Pendleton's Avatar
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    I'd have her see a good child neurologist/physiatrist. If she's attempting to crawl she may benefit from a course of rehab. Since myelin continues to grow until about the age of 3 years maybe start her off on a stomach scooter.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  10. #20
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    I asked their expets some of my questions, and signed up for their newsletter.

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