Last post Thu, Jul 31 2008 12:34 AM by Becky. 29 replies.
Hello! My name is Claire and I am a proud Mommy to a FANTASTIC 3 year old boy with Spina Bifida (mylomeningocele). He is L5-S1, but functions at the S1 level. He has hydrocephalus but no shunt. he walks with and without his AFO's. He is quite incredible and his personality attracts everyone he meets. People are constantly stopping us wherever we go saying he is so cute! (MOST peole out in public have no idea he has SB because you cannot tell if you cannot see his AFO's).
Anyhow, my journey has been tough but so incredibly rewarding. I found Disaboom because of my googling on the mitrofinoff...something our URO has mentioned. I decided last April to start cathing Van (my son) for social reasons. I knew it was inevitable anyway, so why not start now, right? Poop....well the poops stuff is another post all together....wow.
Anyhow, back to the mitrofinoff............cathing has NOT been going well. Van says it hurts and battles us every time we try to cath him. We have tried all sorts of caths and reward systems...he keeps saying it hurts....so the URO suggests the mitrofinoff. I am part of a wonderful support group for Mom's of kids with SB, but I thought if I could talk to actual people with SB that have had this surgery, I could get more helpful info. i always thought Iwould wait until Van was old enough to understand and make the decisin for himself about the mitrofinoff.
So, anyway......I am excited about this community and am glad Ihave found all of you!
Claire
Hi Claire,
Welcome to Disaboom. Thanks for joining our community. Read articles, join in discussions, post a weblog, make comments. Learn, teach, tell your story, and have fun!
How about adding a bio under your profile so we can get to know you better.
I've copied your welcome post to Any Parents With Disabled Children? and Mitrofanoff Surgery to help you get some more feedback from our members.
Glad you found our community,
Bruce
DISALIFE click to see my blogs
Hey Claire,
Welcome! Welcome! I'm Kara, 27, and I have Osteogenesis Imperfecta so I can't give personal advice on specific SB issues but I do have many friends with your son's condition....I'm working on my Ph.D. in psychology and one of my focuses is on the social development of children with disabilities so I'm really glad to read you are already fostering such a nurturing environment for him in that regard. Thanks for posting and I hope to see you around here more!
~Kara
I'm the same Nightnegale who lurks around the SB forum.
I'm here for my own CP, chronic pain, Type 1 diabetes and etc. A friend of a friend sent me the link to this site. Anyway, welcome!
Hey Nightengale! Funny meeting you here!!! If you have been reading my posts, I am just trying to get as much info from the people that live it...so I googled and found this.....
This has led me on a wild goose chase of blogs. i never really read blogs, but I am kind of hooked on jumping from one to the other.
Anyhow, hello!!!
The online disablity community is only "so" big. I see the same usernames on a number of different sites. But too often, the parent sites and adults-with-disability groups don't overlap enough.
Lemme know if you ever make the leap from blogs to Livejournal. I have one, and there is a somewhat active SB community as well.
I have no idea what that is. however, arming myself with as much resources and knowledge as I can is what I am all about...so if you can school me on that and lead me there, I will check it out!
Thanks!Claire
Hi Claire -
So nice to "meet" you. I'm a blogger here at Disaboom and I have spina bifida (the same level as your son: L5/S1). But as I'm a female, I'm not sure what to advise you on the cathing issue. I remember that I learned to cath myself around the age of 4 or 5 (I think). It's worked for me ever since. I hope you're able to find answers for your sons issues soon.
Feel free to check out my blog here as well as my personal blog at:http://www.spinabifidamoms.blogspot.com. I blog about being the disabled mom of a healthy little girl.
I look forward to hearing more about you and your son and "seeing" him develop into a wonderful and active human being.
Take care and good luck.
Amy
welcome to disaboom, claire!
i'm a c4-5 quadriplegic and use an indwelling catheter for my bladder management, so i can't give you any advice on the mitrofanoff, but i know some people who had it done and love it!
i wish you all the best and congrats for being such a caring and wonderful mother!
hugs, lola
Hi Amy,
I have already been to your blog...love it! I am so glad that I have an adult to ask questions with! I am part of two wonderful online support groups and have been since BEFORE Van was born....so I feel lucky....it's just nice to get to know adults with SB!
If you want, check out Van on youtube.....here is a link to one of the videos.....
http://www.youtube.com/watch?v=Pg19IpRFEaw
this video is of Van when he was 27 months old.....when he FIRST walked by himself....then you can see the other videos by looking at "more from this user" tab. You probably already know that feature, but just in case!!!!! The spiderman one is Van in the spidey costume and his cousin. We like that one because Van is just so rad in it.
The doctor told me that Van would be "mentally retarded, unable to walk, and will need to wear diapers for the rest of it's life." Well, I left that doctor......a$$!!!
Van has no shunt, wears AFO's and can walk with and without them....
I am glad I "met" you!!!!!
Until then,
Thanks Lola!!!!
I have decided to wait until Van is old enough to make the decision on his own. I sort of want him to be mr. independent and I think that might help....to make the decision.......we'll see!!Anyhow, nice to "meet" you!!
Cheers!
Hi Kara,
I plan on Van leading an independent life to the fullest......I hope I do a good job!
So far, Van's friends are great and so are people in general. I do admit that sometimes I worry a bit about how people will react. I get nervous they will make a judegement or an assumption before they know Van....and that is a shame, really. However, I don't give people enough credit because people have been wonderful for the most part!!!
Hey claire
The best thing to do for Van is to allow him to be as independant as possible. encourage him to do what he can and assist him in step to achieve what he is unable to do at the moment. I was born with sb Occulta, basically I didn't know that I had SB until my teen years, then just after high I was in an accident that left me a functioning Quad. When I growing up I was "normal" and was able to keep up with the able bodied kids. In junior high I started having some difficulty running, climbing stairs and physically keeping up with my classmates (I thought it was from when I had fell and twisted my knees downhill skiing), it slowly progressed to to loosing some bladder control, I tried to hide it by using adult diapers, but the smell of urine was annoying. In High school I switched to self cathing because I had been having too many accidents, boy did it hurt, and it still and just recently I switched to a hurts now (10 years later). I had used a basic straight cath with lubricating jelly, I just switched to a hydrophillic coated catheter (which means the lubricant is on the catheter, some you have to wet, some come with a liquid packet you need to break and some are packaged in sterile saline solution). I have been using Coloplast's SpeediCath for about a month, it still is uncomfortable, but nowhere near what it used to be.
dont worry about how other people will react. Yes, people will make assumptions before they know a person, I admit I still sometimes do that too, but dont let that affect you in any way. After a while people who have been around Van long enough forget about him being disabled. sometimes people are amazed to what a person with disabilities can do. I salute you with raising a great gift from heaven like Van.
Tara
Livejournal is a community of bloggers. Try www.livejournal.com. You can read a bit without joining but you have to join to post or to read locked entries.
It consists of individual journals (mine is at Nightengalesknd - http://nightengalesknd.livejournal.com/ - although many of the entries, including most disability-related ones are locked only to specific livejournal members) and communities (No_Pity, for people with all sorts of disabilties, is one of my favorites http://community.livejournal.com/no_pity/.) I haven't participated in the SB community but I have peeked in there a few times (http://community.livejournal.com/spina_bifida/.) It doesn't seem to be very active but people do respond to posts including those of moms/moms-to-be.
Hi Claire - welcome. How awesome that Van is doing so well, and I wish you success with the cathing.
