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  1. #1
    Join Date
    Sep 2007
    Location
    Denver,CO USA
    Posts
    1,156

    Wink Introduction to me and the site!

    Hi! My name is Barb and I am an admin here at SBC! Years ago I opened this site as a forum for people living with spina bifida. It was a great and active forum but, unfortunately, my real life became very hectic (lots of surgeries) and I also went back to work at the same time. I had to close the board which was very sad for me. I am so happy that we are able to reopen the site and have the financial backing of a parent company to keep it open for the long haul this time!

    So, my 'story'. I am a mom to two boys, one who was born with an L3-L4 myelomenigocele. He is 9 years old now. My other is 11. "C" as I will refer to him for short on the boards is recovering from his 1st detethering in May. It has been a LONG road. He was ambulatory with bilateral afo's prior to but is now using his chair full time. Rather than tell it all in a story I will bullet point his various diagnosis:
    • shunted hydrocephalus (programmable)
    • slit ventricle syndrome
    • chiari II malformation (decompressed at age 3)
    • cecostomy
    • autistic spectrum (very high functioning)
    • latex allergic (has had anaphytic reaction)
    Now the IMPORTANT stuff:
    • He is very, very cute (no, really he is!)
    • On grade level in all subjects but math (we are homeschooling this year)
    • Pretty much a typical kid
    • He loves Disney and Bears
    • Wants to be a Rock Star or an Imagineer when he grows up
    • Has a very cool new TiLite chair with light up wheels.
    So, I guess that about sums it up. I loved sharing with and learning from all the members years ago and I am so lost without the support.

  2. #2
    Join Date
    Oct 2007
    Location
    Sacramento, CA
    Posts
    13

    Default

    Barb, I am glad your boys are doing good. I am a 37 yr old woman with SB. I work as a school teacher of kids ages 0- 5 with special needs. I was using crutches for my whole childhood. I went to using a chair most of the time in my early twenties and have found that I am more active now being a chair user than I was when I was using my crutches. I also have a Learning Disabled. I had problems with my reading that I had until I was a senior in high school.

  3. #3
    Join Date
    Sep 2007
    Location
    Denver,CO USA
    Posts
    1,156

    Default

    I used to be a teacher! Do you work for an early intervention program?

  4. #4

    Default Hello

    Hello Barb my name is jr. I have a beautiful lil girl who will be turning 6 this month. She is now in kinder. "full inclusion" she is the reason i've joined because my wife and i have so many questions. Our daughter is very bright and independent but there are a couple things we are not quite sure how to teach her. One of the main things is teaching her how "cath" herself. Any suggestions will be greatly appreciated. thank you

  5. #5
    Join Date
    Sep 2007
    Location
    NW, Ohio, USA
    Posts
    143

    Thumbs up

    I guess it is time that I join in here I do not have SB or have a child that does but I consider Barb an extremely good friend and she has taught me so much about SB! Her son C is an absolute delight and he really cracks me up! I may not be able to answer all of your questions as well as her but I am doing my best and I will help in anyway I can. Feel free to educate me if you want me to know something!. I am tech savvy so I can figure out any site problems/questions you might have Thanks for letting me be a part of your community and advancing my knowledge of SB!

  6. #6
    Join Date
    Feb 2008
    Location
    PA
    Posts
    1,658

    Default New

    I am new. I am looking everywhwere for forums on SB and can't find very many active ones anymore. I am 30 i have L4/L5 Myleo. I am the mother of an 11 year old who also has a neural tube defect. Looking forward to the discussions

  7. #7
    Join Date
    Jan 2008
    Location
    South Africa
    Posts
    68

    Default

    Hello Angel!

    Welcome to the site. I also struggled for long to find a decent SB site.
    Stop your search - this is it!!

  8. #8
    Join Date
    Jan 2008
    Posts
    100

    Smile

    Quote Originally Posted by junior View Post
    One of the main things is teaching her how "cath" herself. Any suggestions will be greatly appreciated. thank you
    I have a 12 yo son who had been cathing himself for quite some time. However, due to the lack of sensation, he ended up creating a false passage which produced a blood clot. Doctors now say that rather than self-cathing below, having a port for him will be the ideal way to conquer this task.

    I also have a 9 yo daughter. Due to her developmental disabilities, the question of self-cathing was not raised until recently. Will she be able to do so? I honestly don't know at this time. However, due to one wonderful nurse who called into the Mentor/now Coloplast company, they have little backpacks that are filled with things to help the child learn about the process before attempting to do so.....things such as beading a necklace (to help with fine motor skills, which are also rcv'd in OT), to a deck of cards sequencing the steps (ex: gathering supplies, washing hands, etc).

    I thought it was a wonderful idea and can only wish we had this option with son as well.

    If anyone would like any more info (contact #, etc), please let me know.

  9. #9
    Join Date
    Feb 2008
    Location
    PA
    Posts
    1,658

    Default Thanks

    I have to agree i do like this site already!!

    I don't know much about cathing to be honest but i do know that when i tried it it really hurt!!! I do have sensation and always in a way thought the ones who couldn't feel it were so lucky. ( i look for the perks in every situation lol) I am sorry to hear about the trouble your son had. I didn't know you could create a false passage!!!

  10. #10
    Join Date
    Jan 2008
    Posts
    100

    Default

    Now that I read my post over, I want to make note that the false passage occurs in males....sorry, should have been more specific. At any rate, it was quite the experience, yet we learnt from it!


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