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:
Now the IMPORTANT stuff:
- shunted hydrocephalus (programmable)
- slit ventricle syndrome
- chiari II malformation (decompressed at age 3)
- autistic spectrum (very high functioning)
- latex allergic (has had anaphytic reaction)
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.
- 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.
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.
I used to be a teacher! Do you work for an early intervention program?
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
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!
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
Welcome to the site. I also struggled for long to find a decent SB site.
Stop your search - this is it!!
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.
Originally Posted by junior
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.
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!!!
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!