I'm new here so here we are......

[lisamarie6801]

Hello everyone. My name is Lisa and I am 28 years old. I am a single mother of 4 children. Shyann girl (11) who has spina bifida, Dakota boy (9), Joshua boy (7) and finally Mackenzie girl (6). I got an early start in life and found myself pregnant with Shyann at the tender age of 16. I found out at about 4 1/2 months pregnant that she would be born with SB. My OBGYN informed me it was to late to have an abortion here in Oklahoma but urged me to drive to Kansas to have the procedure done. My husband at the time and I refused. I learned as much as I possibly could as quickly as possible and went foward with the pregnancy. Terrified in a sense, but all with the mentality of an invincible 16 year old. I figured I could adapt to this just like I had the rest of my troubled childhood. I was naturally given the worst case scenario by doctors concerning Shyann's condition at birth. I went in for a scheduled c-section. I was nervous. At 8:07am Shyann was born. One of the first things I remember is waking up in my room a few hours later. The nurses for 2 days straight refused to let me see Shyann. I had plenty of stitches and I was not allowed to get out of bed. Right after the c-section they took Shyann in and closed the opening on her lower back. They also placed a shunt in the same day. She was also born with club feet. Her prognosis was great however. She had feeling throughout her entire body except her left leg. She would be able to use a walker. We were pretty sure however her kidney's did not function as they should. I got to see her the second day as I wheeled into the babies ICU in my wheelchair. It looked so painful and I felt horrible for her. I knew she had to be in tremendous pain. I had great faith and hope for our future together however. I went in several times a day to feed her thru her tube and watched her grow quickly. 2 weeks after birth the closure on her back broke open. They had to immediately take her back in and reclose it. A month later Shyann left the hospital and came home. I never knew the detailed care she required until we were all on our own. It was tremendously stressful and mentally/emotionally tiring. I changed dressings constantly. During this time my marriage started falling apart. It had nothing to do with Shyann and everything to do with her alcoholic father. I was left on my own to care for Shyann 24/7. I soon left once I was capable of getting out on my own and supporting myself. My mom and I had always had a horrible relationship and living with her was impossible. I moved out and learned to make it on my own. During the years leading up to now, Shyann had several more surgeries. She had her club feet corrected at the age of 3. One negative thing we did face was a surgery when Shyann was 5. Her orthopedic doctor suggested Shyann have a surgery to fuse her spine and place 2 rods in her back. This was to assist her posture and also prevent it from any further curvature. I was concerned since they would be working around all the nerves that she would possibly lose feeling/movement in her right leg. The doctors reassured me that they knew what they were doing and she would pull thru fine. To this day Shyann has not regained her feeling/strength/function in her right leg. She is in a wheelchair for mobilizing. I remarried years later and had 3 more children. We were divorced last summer.

Granted this time was a stressful period in my life. It hasnt been easy by any means. It's the hardest thing I've ever had to face but wouldnt take back a second of it. I feel Shyann saved me from years of turmoil ahead unknown to me. I instantly went from a spoiled/invincible/selfish/irresponsible teenager to a loving, yes fantastic mother. I learned and developed just as quickly as she did. I have always remembered one key moment in my pregnancy. Not long after I found out and confirmed with my doctor that we were going thru with the pregnancy, one of the nurses told me a story of her handicapped child. He was mentally handicapped to an extent but could still perform daily tasks. 11 years later, this is what her words mean to me....I do not cater to him, I do not jump every time he needs me, I let him attempt things on his own. I refused from the day he was born to let him be independent on me and his father. I took those words and ran with them and because of that, Shyann is a very independent, happy child. By no means is she ever allowed to do something that would possibly hurt herself. But thru these lessons she has learned what she can and can do with help, that if she can do it on her own, she will. She will only ask for help if she genuinely needs it. I would hate to see her at the age of 18 or 25 or whatever be totally dependent on me. She has a life to lead just like the rest of us and will live it to the fullest right along with the rest of us. She is NO DIFFERENT than anyone else nor is she treated no differently than her siblings. She may have to try harder to do certain things and face more obstacles but has every right the rest of us do. I am very proud of the way I have raised this angel and I owe her everything I can possibly give her for she made me the mother I am today ;)

[Barb]

It is very nice to meet you. You have been through a lot! I know you will find some support and friendship here.

[Spokie]

Hi Lisa! Congratulations on fighting through the hard times and making the best of it. Welcome to our family! I am also a single parent, and, like all other parents here, have learnt so much from my child - they really are wonderful and inspirational!

[angel]

I took those words and ran with them and because of that, Shyann is a very independent, happy child. By no means is she ever allowed to do something that would possibly hurt herself. But thru these lessons she has learned what she can and can do with help, that if she can do it on her own, she will. She will only ask for help if she genuinely needs it. I would hate to see her at the age of 18 or 25 or whatever be totally dependent on me. She has a life to lead just like the rest of us and will live it to the fullest right along with the rest of us. She is NO DIFFERENT than anyone else nor is she treated no differently than her siblings. She may have to try harder to do certain things and face more obstacles but has every right the rest of us do. I am very proud of the way I have raised this angel and I owe her everything I can possibly give her for she made me the mother I am today ;)

I was so happy to read this part of your post. My mom raised me the same way. I am 31 i have myleo L4/L5 and am totally independant. I am married, i have a child of my own, my own home, i run my own business, i drive, i do it all.
My mom never catered to me. I was expected to do the same things as my brother and sister and a lot of people thought my mom was mean for making me do all this. They are eating their words now and she is finally getting the apologies she deserves because she was right. Because of the way she raised me i am happy and living my own life my way.
My son is 11 years old and has SB occulta although it is a less severe form he has had surgeries and has the bladder problems and extream bowel problems. I was also young when i had him so i can identify with you there as well. I was 19 years old when i had my son. Before him i was just a total party girl. Nothing mattered i was young and invincible and eventhough i had sb i was totally accepted by most people i went to school with and was having a great time. If not for him i don't know where i would be right now. I doubt i would have grown up and realized the things i have now. Although it was tough i grew up and turned into a pretty good mom (at least i am trying)
It sounds to me like you are doing a great job!!!!
I just sent my son to camp for the first time this morning. He is going with his 5th grade class and i admit i am a little nervous about it. I am more worried about him taking care of himself and not having a bladder or bowel accident in front of his friends. If he does it won't be the end of the world but will be embarassing for him. We had a big talk about it. He is capable of taking care of everything himself my concern is that he will be to busy playing with his friends to pay attention to what his body is telling him. He is continent as long as he pays close attention but if he has his mind on other things then who knows what will happen. It is so hard to let them go on their own but a necessary part of growing up even if they have a disability.

I think you are doing a great thing by helping her become independant!!!!!

Angel

[Spokie]

To Angel's son at the camp: Good luck and good for you!

I've also been told I'm too strict on my son - but he has learnt to be independent and to try everything himself first... except when he's at grandma's... then the poor special child is a complete invalid! I have spoken to my mother about this and she's trying to change, but it's hard for a grandmother not to spoil her grandchild rotten. ;)

[angel]

Me and my mom have gone rounds on this issue. Not that she thinks he can't do for himself it is just the spoiling him rotten issue!!!!! I live a thousand miles away and she will send the toys to him eventhough i tell her to stop buying him things all the time!! ugh! I don't know where this woman came from. If my son burned her house to the ground she wouldn't get mad!!! She also tells me i expect to much of him????? I swear i think the day my son was born aliens kidnapped my mom and replaced her with this woman lol.

[Dodger67]

Thats just the usual grandma syndrome.
Don't worry about it.
It causes no harm and its incurable anyway.
I "suffer from" a related condition called uncle syndrome.
LMAO!

[angel]

You are right i try to give up but it is hard. I am sure i will be the same way with my grandkids someday.

[lisamarie6801]

I havent yet figured out how to place what a previous member has said in mine but, I was reading Angels I believe it was. Shyann has been in pull ups her entire life. (More comfortable than diapers for her) She is cathed 4 times daily and has no bladder control what so ever. So sometimes she does have accidents at school as far as bowel movements. It is often embarassing for her if she starts feeling self-concious before her aid gets there or she gets out of the classroom. That's unfortunately just part of life for her. On an upside, she is scheduled to have the ACE procedure (and the other one....technical term has left my brain momentarily) May 28th!!! Her posture has not allowed her to cath herself the "standard" way via mirror etc. Were both thrilled and although she is starting to worry and stress as the upcoming month arrives, she is trying to see the sun thru the clouds and realize this will dramatically change her life for the better and make her even more independent than she already is. As far as your son, if he does have an accident with friends around, naturally he will be embarassed but hopefully he will learn from this and it will only assist him in the future! I look back on alot of my childhood experiences that at the time seemed like the world was coming to an end, (granted they wernt SB related) but now it was just part of childhood and it means absolutely nothing. Hopefully thats the way our children recall these situations when they're our age! Anyhow, Shyann and I are planning a date to go :Dpanty shopping:D before her surgery!!! We can't wait and this is definately a major part of both of our lives, it will make her more independent, give me more free time and the biggest thing for her....she will suddenly be available for sleepovers!!! Yeah!!!!! Has anyone else had experience with this surgery? They say she'll be down for 4-8 weeks, and given me the standard procedures etc, is there anything that is pertinent information they may of failed to include?

Thanks to everyone for the welcoming!!! It's great to talk to someone else who has a clue and doesnt need a 30 minute explanation on SB before conversation goes any further!! Yall are great!!;)

[angel]

I am sure he will be fine. i have embarassed myself in every way imaginable in relation to SB and things that were not. he will get over anything that happens and it may just give him to motivation to make sure that taking care of himself is top priority. My husband worries about it so much he don't want the other kids to make fun of him. I just tell him maybe something like that is what he needs to realize that taking care of himself comes before everything else.

I have never heard of that proceedure until i got on here. A lot of things were never available to me as a child it was just learn how to hide the stuff you didn't want people to know about and learn how to deal with it. I am now taking a much higher dosage of ditropan and i am in heaven. I can actually have a good bit of control over my bladder. Before this it totally had a mind of it's own. I am so glad that the children now days have these options things are so much easier to adapt to as a child.

I wish my son could take something to help him out with his. Now he just takes septra to ward off infections. He can't take ditropan or anything like that because of his severe bowel issues. His urologist just thinks it would intensify an already very big problem.

Good luck on the procedure and have fun panty shopping!!! (I have to admit i am so jelious of all that have little girls. If i buy underwear for my son he will walk 20 feet behind me in the store) Teenagers!!!!!

Carla

[lisamarie6801]

Good luck on the procedure and have fun panty shopping!!! (I have to admit i am so jelious of all that have little girls. If i buy underwear for my son he will walk 20 feet behind me in the store) Teenagers!!!!!


^^^^
I'm hoping that came out right!!!! Don't be jealous!!!! There ALL DRAMA! I'm thinking she's hitting the stage early! She's only 11! It seems like I was at least 12/13! I sware it was like, overnight! She somehow out of all 4 of them has always had the best attitude, greatest outlook, and the sweetest of them all! Then one day......It was like, Mom's lame, Where's the phone, get out of my room, and when are we going shopping?! In 24 hours I went from being a GOD to just another annoyance in her life, all with a roll of the eyes.....cant ever leave that out. My boy's seem so much simpler!!!:o

[Michelle]

On an upside, she is scheduled to have the ACE procedure (and the other one....technical term has left my brain momentarily) May 28th!!!

I am curious...what is the ACE procedure? My son is only 4 months, but I am continuously trying to learn all the different things that are available.
Thanks!

[lisamarie6801]

I am curious...what is the ACE procedure?
Thanks!

Well instead of giving you all the gibberish her doctor gave her, here my friend mommy terminology:

Firstly, the other one is called the mitrofanoff bladder augmentation. I've had 24 hours to rethink that. She will have the ACE procedure performed at the same time.

The ACE is for the bowels/the Mitrofanoff is for the urine. Lemme see if I can explain this correctly...

They will go in and place two holes around Shy's lower stomach. They will use the appendix for one, possibly two holes depending on it's size as a route from the stomach wall to Shy's large bowel to form 2 artificial openings. As I stated before because of Shy's posture she has been unable to cath herself via the standard route. This will allow her to basically cath herself thru those 2 artificial openings. As it was explained to me, she will get up in the morning and thru the ACE opening she will do something like an enema with lots of water/solution. She will flush out her bowels within minutes. Thru the Mitrofanoff opening she will cath herself for her fluids. She will only have to perform the ACE once per day on normal circumstances. The other one is alot like me cathing her, 4 x's a day under normal circumstances. I hope that all makes sense!!! I looked up a good site to explain it in more accurate terminology I'm sure :o

http://www.ich.ucl.ac.uk/factsheets/families/F050008/

PLEASE.....anyone who cares to correct me on any technicalities please do so!

[angel]

^^^^
I'm hoping that came out right!!!! Don't be jealous!!!! There ALL DRAMA! I'm thinking she's hitting the stage early! She's only 11! It seems like I was at least 12/13! I sware it was like, overnight! She somehow out of all 4 of them has always had the best attitude, greatest outlook, and the sweetest of them all! Then one day......It was like, Mom's lame, Where's the phone, get out of my room, and when are we going shopping?! In 24 hours I went from being a GOD to just another annoyance in her life, all with a roll of the eyes.....cant ever leave that out. My boy's seem so much simpler!!!:o

I know they are all drama because ALL of my friends have girls about the same age as our kids. To be totally honest i feel kind of sorry for them because they go though a lot more than i do. I guess i just thought it would always be fun to have a girl that you could do girly things with. It is so funny though i know exactly what you mean. On his 11th birthday it was all of a sudden he knew everything and i knew nothing and i get the eye rolls, and he even likes to cop attitude with me for nothing. I can ask him if he put his socks on and you would think i kicked his puppy or something!!!

I find the funny parts of it though. Since he thinks he knows everything he is getting into using words he isn't clear of the meanings, he uses his infinate 11 year old logic to try and solve everything. Most of the time he doesn't even understand the subject so the solutions can get pretty funny. I am enjoying it. He comes back from camp today i miss my little drama king lol.

Angel

[Dodger67]

I have an "Illeal T-Pouch" which is something like the Mitrofanoff except that my "original" bladder is not used. I have a tiny stoma "semi-hidden" in my navel and my catheter goes everywhere with me. It was rather strange learning to recognise the "full bladder" feeling.

About the kids who catheterise 4 times a day: That is nowhere near often enough! 6 to 8 times is more likely to get results. I used to do it at least every 2 hours.

With my new "illeal t-pouch" I do it as needed because I can feel fullness, but it still comes to 6 to 8 times a day with usually 300 to 400 cc urine produced at a time.

[kali]

you all sound like awesome parents,huggsssssssssss

[angel]

Thanks Kali i needed that. I am not feeling like such an awesome parent today. Let me fill you guys in. Well he went to camp and sucessfully hid his accident from everyone. When i opened his bag and i swear i saw green smoke come out of it. Now on one hand i am not happy with him cause i know he just didn't go to the bathroom because he was to busy doing something else. But on the other hand a part of me is proud that he figured out a way to hide it. Does that sound messed up or what???
I got his report card right after he returned from camp. I may have mentioned this somewhere else on the board but he TOTALLY dropped the ball with his grades this period!!! He is an A B student. I expect that from him because that is what he delivers more than not. Education is his key cause any hard physical labor with his SBO isn't going to happen. He is grounded and really pissed at me about that although i kept reminding him it wasn't ME who chose not to turn in my homework so i didn't really see how this was my fault!!
Then you add my stepson into the mix who is a great kid but is having issues. He and my son for some reason has stopped getting along. My son would take everything that the other would dish out and not say a word then finally enough happened and my son just told him off. Now i am trying to figure out what the heck is going on between them and how to get peace back into my home. I don't do drama well at all and both my boys are full of it right now!!!!!!!

Sorry needed to vent
Angel

[kali]

hugs angel, and smiles, life does have its up and downs, and boys will be boys. his solution at camp sounds interesting...hugggsss your son sounds like my son