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  • 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.
    "All you need is faith and trust... and a little bit of pixie dust!" --Peter Pan
    Read about our lives and travels on my blog Mom Off Track
    I am on twitter if you ever need to get me quickly or just want to chat about something!


  • #2
    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.

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    • #3
      I used to be a teacher! Do you work for an early intervention program?
      "All you need is faith and trust... and a little bit of pixie dust!" --Peter Pan
      Read about our lives and travels on my blog Mom Off Track
      I am on twitter if you ever need to get me quickly or just want to chat about something!

      Comment


      • #4
        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

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        • #5
          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!

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          • #6
            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

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            • #7
              Hello Angel!

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

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              • #8
                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.

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                • #9
                  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!!!

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                  • #10
                    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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                    • #11
                      After a lifetime of struggling with CIC which seemed to have little to no effect on the rate of leakage, I got an artificial sphincter, unfortunately it failed due to being "strangled" by the formation of tough fibrous scar tissue. A few years ago I had a continent diversion done, known as an illeal T-pouch. Problems solved! I now catherterise through a small stoma in my navel. No leaks, no smells, no bags, no hassles! My catheter simply goes everywhere I go. I have a very good capacity (about 400-500cc), enough to sleep through most nights (unless there was beer involved before bedtime!) LOL!
                      Roger
                      Sumus semper in excretum sed alta variat!

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                      • #12
                        That is good info to have i have a son and though he doesn't cath now you never know if he will have to in the future.

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                        • #13
                          My 13 year old was diagnosed today

                          Hi everyone...I'm a little surprised and curious. My 13 year old daughter was diagnosed with SBO today, after a long history of progressively worsening pain and muscle spasm. She's going for a CT on Monday and starts physical therapy next week for the spasms. Online descriptions of older child and adult diagnosed SBO have caused me reason for serious concern, regarding bowel and urinary problems and neurologic damage. Does anyone have any experience in this area? I could use some info from another parent or person in the same boat. Thanks.

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                          • #14
                            I have an 11 year old boy with SBO. Feel free to ask me anything!!

                            Angel

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                            • #15
                              hi there,my name is Harmesh Singh. I'm 31 yrs old & working as a lawyer in Kuala Lumpur. i just got married some time last year to an able bodied person. Its been a pretty interesting experience marrying someone different. Am pretty new to this whole blogging thingy so if there are any shortcomings just ignore em :-) i have spina bifida cystica at the L4 level...Coz of this i have urinary & bowel tract incontinence. I also have hydrocephalus for which a VP shunt was inserted when i was very very young. Of course the shunt has been revised repeatedly over they years and so far so good...:-) I think this is more than enough for an intro. If anyone has any questions pls dont hesitate to drop me a line...till then i'm signing off

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