Last post Thu, Jul 31 2008 12:34 AM by Becky. 29 replies.
hi claybay, somehow i missed saying hi and welcome..
Hi, Claire! I wanted to let you know that you are doing exactly the right thing with Van! I am a 30 year old woman with Spina Bifida, I had a mylomeningocele that I had permanently taken down when I was 19. Until that time, I couldn't lay on my back without getting an excruciating headache, and I had a doctor actually put me into seizure one time (the only time i ever seized) by laying me on my back, bending my leg at the knee, and pressing down! This was a neurologist that did this!! I was about 8 or 9 when this happened, and my mom snatched me up and ran me out of there, we were actually in the state's crippled children's program. I don't know if it's still called that or not, I would hope not!
Anyway, my whole point here (you thought I didn't have one, didn't ya?) is that my parents raised me to be terribly independent, although I am stubborn, I quit wearing my AFO's when I hit puberty and was too embarrassed to wear them, so my feet turn in, but oh, well! I do use a wheelchair as opposed to a walker or crutches, and a lot of that does have to do with vanity. I hate the way I look sliding around on cuff crutches, I actually haven't used them in years. Between hating the way I look on them, and my hips deteriorating the way they have, the wheelchair is more convenient and more comfortable.
I was determined to drive, so I took drivers ed at fifteen, got my license at sixteen, with all my friends. My daddy bought me a car at sixteen just like he did my brother and my sister. I went out drinking on my 21st birthday (well, I'll be honest, I went out drinking well before my 21st birthday!). I guess my point is that I have a more "normal" life than some "normal" people. I give all the credit to my parents, and how they raised me to be independent and not let anybody tell me I couldn't do whatever I wanted to do. I have a career, a car, (i refuse to drive a van or use an electric wheelchair, even though the ol' arthur is setting in pretty good!) bills, (woo-hoo!) and if I ever get out of bankruptcy, (i like shopping) I'll buy a house. I hope to get married, just can't find a man that I don't have to babysit! I can have kids, but I don't want them. Don't get me wrong, I love kids, but I also love giving them back! :)
I could ramble for longer, but I won't!
for anyone who self-caths like i do, i use a metal tube, it used to be called a "sound", i don't really know what it was called the last time my mom ordered one for me, but you can find them in a medical catalog. my urologist started me on these when i was like 8 yrs old, that's what i learned to self cath on. you don't have to throw them away, so you're not spending all that money on catheters, they are not cheap. really the only maintenance is to boil them in hot water every day or so. i love my metal cath, i have one for home and one for my purse, it just fits inside that little inside pocket with my tampons, i wrap it up in a paper towel after i boil it.
i'm sorry to hear about your son.well my family is going through the same with our unborn grandchild was diagnose with what your child has.we are alll praying for the baby to be alright.it is scary to hear that and child very young to have that. i wish that your son and our grandchild did'nt have spina bifida.
I know it is hard for you right now,not having that wonderful baby to hold and love yet, but please try not to worry too much. If you read my original post, then you will remember what a wonderful son I have. I am not sorry. Yes, I would be lying if I told you that sometimes I wish he did not have SB, but really I do not think about it anymore.
I cna hear your pain and I extend a cyber hug to you.
All the children with spina bifida that I have met are some of the most wonderful people.
I look at it this way....you grandchild will be born with what people call a disability. However, I believe it is only a disability if it keeps that person from being the most they can be. So what if your grandchild will not be able to walk.i know plenty of people that can walk and are awful people.
This world needs more angels that can help others see that what is inside is the beauty of the human.
I belong to an online support group, if your daughter (or daughter-in-law) is in need of some support. We are a great group of Mom's of children with spina bifida. Without these women I would not be doing as well as I am.
Fell free to contact me and I can send you my email!
Claire
Chandradavis, My Heart goes out to you. I have a wonderfull grandson who just turned 3 today, He cannot walk at all he has to use braces and a walker, and has a wheelchair. At first i think i felt like you . It's hard, I feel God dosen't give you any more than you can handle.
My grandson son's name is C. J. he is my 2nd grandchild and is the light of our life. He has the best mother that any child could ever have.
He may not be able to walk , But the Doctors told us when he was born that they fixed him the best that they could for today. and with medical techlogy who nows what will happen down the rode, He is Very bright, and loving, He has been chosen as a poster child in our aera. He does have a shunt. At fist the doctors said that he had downe syndrom. Not true. Just learn all you can talk to anyone who will listen.
and love that baby with all your heart. My daughter in law is now pregant with her second child. In march we will find out if this baby will have Spina Bifida. good luck and lots of prayers
Hi,
My name is Lisa I am a 23 year young lady that has SB, my level is at L4/L5, I do agree to wait on the surgery for the cathing, but I know its been success for all my friends with SB, it gives them the freedom and the confidence. I am in the early childhood education and will be graduating next year in may, You may try having your son bring a toy to distract him while you cath him and during the process ask him questions about that toy that he has, I don't know this will work but I was taught to try to distract a child if something is uncomfortable or its going to hurt, let me know if I can help any further. Lisa
Hi Claire-
I just joined Disaboom and this is my first post.
My son is seven, has SB - sacral - and has had a Mitrofinof. His Uro told us about it years ago and he said he wanted to do this before he entered school to have him out of diapers and as much like the other kids as possible. We had been cathing him for a few years and then the Uro gave him a stoma to free drain into his diaper. The Mit works very well - usually. He has had a couple of revisions.
At the time the Mit was done, the Uro also did a MACE (Malone something something enema) for his bowel care. The Mace was so worth it because my son was getting impacted all the time.
I hope this helps.
WELCOME! I GREW UP A DISABLED CHILD MYSELF AND ALL I CAN OFFER YOU IS TO GIVE VAN LOVE LOVE MORE LOVE !!!!!!!!!! RAINEY
Hi Claire,
I'm a 46yr old female with Spina Bifida. I came from the old school so not sure what a mitrofinoff is. My bladder stopped working early in life & I had an ileostomy done. If I can be of any help to you bouncing off issues or concerns you have please feel free to contact me.
Kim
Hello Claybay, Welcome to Disaboom. I'm sorry to hear about your troubles. Hope it gets better for you. Hang in there.
Becky
I can't help you with the details since im a female and have an L3 L4 issue but I know of a great hospital that got me thiough everything it's Shriner's hospital for crippled children. Chances are you have already been told about them..but any info helps i guess. The hospital in Portland Or is tops.
Hi my name is Miranda and I have a 7 year old with spina bifida her name is Lydia and I always like talking to other parents of children with spina bifida and we probably have a lot in common it sounds like when it comes to our kids so please feel free to contact me via e mail at clarkbarr69@yahoo.com I hope to hear from u soon! Thanks.
Hey Miranda! Welcome to Disaboom. Lydia is a beautiful name. I am a right below-the-knee amputee and cancer survivor. You should start a thread of your own to introduce yourself and Lydia to the members! Good luck to you both.
