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About

About Us

Spina Bifida is a part of my life.  This neural tube defect is accompanied by shunted hydrocephalus, club feet, cathing, bowel programs, physical therapy, wheelchairs, walkers, and a host of other things that typical families don’t have to contemplate on a day to day basis.  Before adopting Anna in 2005, I did research online to gather information about “myelomeningocele” as the doctors called it.  What I found on line was not particularly comforting.  Don’t get me wrong- there were some sites that provided good information, but I felt the need to keep searching and searching for more details.  It seemed that I was reading the same thing over and over without learning anything new, practical, or helpful.  Most spina bifida articles seemed a bit clinical and generic, and I still had a lot of unanswered questions.  With this in mind, I decided to design a page that would bring together all the information people with spina bifida need.  I wanted it to be fun and attractive, and updated frequently.  I started working on the site November 9th, 2008, and launched the forum a couple of weeks later.  My goal is to provide a place where you can find what you need all in one place.  Hence the name- Lifestyle Accelerator.  Spina bifida is part of your lifestyle, and we want to streamline your life by putting information at your fingertips.  Please enjoy the site.  Participate in the forum.  Email me with suggestions for any of the pages.  I want this site to be interactive and fun.  Bookmark it for future reference.  You may find that we become a second family to you.  I certainly hope so.

Annie Beth Donahue

anniebethbrown@hotmail.com

15 Responses to “About”

  1. Rose Mary says:

    I love your web-site and I didn’t know your Anna was adopted. Keep up the good work.

  2. brent says:

    Thanks for all you do Annie. You are a blessing for all of us.

  3. donna carley says:

    annie
    its so comforting to have others to discuss things about SB that only we understand.. thanks for your wonderful website!
    donna carley
    russellville, ar.
    adult with SB

  4. Jacqui Morel says:

    Hello,

    We also adopted our son, Gavin who has SB. He has officially been our for two years now. Some people think we are crazy for adopting someone with SB, but I wouldn’t trade him for the world.

    I just watched your video on you tube about the cone enema, as we will be starting this with Gainv, who is 3 1/2. On the video you state that the formula for how much water to use is on your website but I am not able to find it. Can you please tell me where to find it.

    We live in Wyoming and have no specialits near by, and the ones we have don’t know about the cone enema. Our GI doc finally said to go ahead but said to only use a couple of ounces of water. She is not familier with the cone eaither, but we have tried suppositories and digital stimulation with no results.

    Thanks for your help.
    Jacqui and Gavin

  5. Annie Beth says:

    The formula is under “Health”, and then “Bowel”. It’s in step three of the cone enema program. I will send you an email with the link. Sorry you don’t live near any doctors that have experience with the cone enema. Our GI doc had never heard of it either, but the urologist was the one that gave us a hand out and had the bags on hand to purchase in the office. I’m always glad to hear positive reports from other adoptive families. We are very pro-adoption.

  6. Jacqui Morel says:

    Thank you again for responding to my post. Our urologist didn’t want us to do the cone enema because he said it would dialate the rectum. So, we went with the referal from the GI doc. We will be adopting another foster baby within the year, she is fine physically and will be a nice addition for the two boys I already have.

  7. Jacqui Morel says:

    Hello Annie Beth,

    We have started the cone enema and I am wondering if what we are experiencing is normal or not. We are on Day 4. The first night everything went fine and the next day there was no poop. Day two there was not much that came out with the enema, the next morning he woke up with a poopy diaper, and then about 45 min before we were going to start the enema he had another poopy diaper. All day today we hav had poopy diapers, not as many as usual though. Is it typically to still have poopy diapers when you first start the enema process?

  8. Annie Beth says:

    It is. Your body has to get used to the routine of voiding at a certain time. Changing the time of day can help- first thing in the morning or after dinner are two good times when your body is naturally stimulated to poop by either the digestive process or just the effects of waking up. Making sure the poop is the right consistency is also very important. It needs to be soft enough to clean out effectively. If it is too hard, you can have residual poop. It really can take weeks to get the right routine down. Poop that’s too soft can also leak out during the day. It’s not at all unusual to struggle to get it right in the beginning. Same goes for the MACE procedure.

  9. Sarah says:

    I am looking for more info about making our bathroom accessible for our children with SB. Can you help by sharing your bathroom set up? I thought I saw it on here somewhere but can’t find it now. :)
    Thanks!

  10. Annie Beth says:

    Sure! I will email you about that.

  11. Melissa says:

    I have a friend who has Spina Bifida – she is 31 and I feel really needs a mentor with SB who can help her reach her potential. I and my friends have tried, but I feel she needs to hear and be motivated by someone who has SB. She lives with her parents, is depressed – no matter what we try – it doesn’t work – she really needs her own place where she can feel independence….she needs to find employment that can accommodate her needs….but no matter what we do she just cannot get motivated. It breaks my heart to think that she might spend the rest of her life so sad depending on others…. Any advice on how to find her a mentor to show her it can be done would be appreciated.
    Blessings,
    Melissa

  12. Annie Beth says:

    I will email you privately about some great resources.

  13. Anna says:

    Hello, my name is Anna.I have a son 4,5 years old with SB. I speak Russian, so I’m sorry for my mistakes.Today I found video on youtube where you show how to use the cone enema.I never heard about it before.And i want to try it for my son. My question is where to find this cone enema and is this kit just for one use or you can use one kit for many times?And I want to thank you for your site!It is a GREAT HELP for me and I’m sure for other parents too.On that video I saw a toilet system that you use.I wish we have one too and maybe you have some advises for me how to get it with the help of our insurance company. We always have problems with them when we need to get any equipment.I really like that toilet system and it’s very need. I will wait for your answer!Thank you!

  14. Anna says:

    Hi, it’s me again :D I found this question to you….

    “I am looking for more info about making our bathroom accessible for our children with SB. Can you help by sharing your bathroom set up? I thought I saw it on here somewhere but can’t find it now. :)

    Could you please email same info for me?

  15. Hi Annie,
    What an amazing resource you have created! Thanks so much for including us as a catheter resource.

    Kieranne

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