| Name: emily | Date: Jun 12th, 2009 1:55 AM |
| oops sorry i forgot my email address! emilym_s@hotmail.com. Im 21. Im looking for advice from any parents who could help me gain support from my dad about my struggles at school, the stress has given me severe depression because he believes im just lazy so i would love any suggesttions ↑ |
| Name: opal | Date: Jun 26th, 2009 10:43 AM |
| hello ,i have a daughter who is 13 and was wondering if anyone would like to chat with me ↑ |
| Name: opal | Date: Jun 27th, 2009 4:18 AM |
| sarahj how are you ,I have a 13 year old with SB in the lower back with diplomelia and diastematamelia .She has had several ops and due to have her next op on her head where she has to get some of her skull removed . it gets very stressful ↑ |
| Name: Catherine | Date: Jul 1st, 2009 2:25 PM |
Hey! im 17 and i have spina bifida. live in scotland and sometimes i feel im the only one with it! but im happy most of the time and i'v been told im "very independant". im on crutches and wear splints, or braces and have a few other problems but they dont get me down often. :)
if you'd like to chat the email is: catherine678@hotmail.co.uk ↑ |
| Name: peter ainoo nyarko | Date: Jul 2nd, 2009 11:03 AM |
| hi ineed a christaian friend am happy to meet you , you are welcome to meet peter byeee see you there ↑ |
| Name: opal | Date: Jul 7th, 2009 3:24 AM |
| hi CHICKY how are you I'm opal why are sad things can't be that bad . I have a daughter who is 13 with spina bifida as well as diplomelia and diastematomelia now is going in for a operation called the arnold chiari decompression . What is making you so sad it's always good to talk okay ↑ |
| Name: Michelle | Date: Jul 9th, 2009 10:52 PM |
| Hello everyone. My name is Michelle and I have Spina Bifida. I have recently made the decision to get my tubes tied. I saw my doctor today and he told me that me having the disability I have isn't going to pass on to my children. I was wondering if there is any women in here who have Spina Bifida and had children who don't have that. I would greatly appericate a response. Please contact me at a_nice_girl_in_az_200756@yahoo.com ↑ |
| Name: AmyLouise Hudd | Date: Jul 11th, 2009 8:42 AM |
heya, my names amylouise and i have a 3 week old daughter who has spina bifida and hydro, shes amazing and the best thing to happen to me and my husband.
i completely agree with all of you that say they have nothing wrong with them.
i found out at my 20 week scan and i didnt flinch she is my daughter and it doesnt matter that she would be differant than wat people see as normal.
i was moving house that day and my family was trying to get me to put it off for a while and i thought why? they told the estate agents that we had devistating news and i was so angry! i didnt we had great news im having a baby for god sake! the doctors made it sound terrible but all we cared about was weather she would be in pain and they said no so we didnt need any more info
and if we can have that attitude so can she when shes old enough and other people will not see her as that poor lil girl. ↑ |
| Name: opal | Date: Jul 12th, 2009 2:46 AM |
| hi everyone my email address is lxhatch76@bigpond if anyone would to chat. I didn't know about spina bifida until my daughter was 3 yrs old and the doctor told us that she would get some back pains but nothing to worry about . We then went another doctor who sent us to a specialist and within a week she had her first operation . But the best thing is she's a fighter and i'm proud of her with everything she does. ↑ |
| Name: Leeann | Date: Aug 2nd, 2009 3:29 AM |
| my son was born with spina bifida i had him when i was 19 he is nearly 3 now and doin so well wen i was pregnant it never showed up on scans i only found out as soon as i gave birth 2 him but it didn fase me i love him no matter what and i couldnt live without him yes am young but he's my son and no matter what life throws at us we have each other i dont get the women who want 2 termanate a baby no matter wat his/hers condition its a baby who can still bring u a lot off happiness my son brightens up my day every single day yes its diffacult but isnt every baby my son in my eyes is a star and i wouldnt change him 4 the world x ↑ |
| Name: angefahey | Date: Aug 3rd, 2009 11:48 AM |
| hi all my name is angela im 5 and ahalf months pregnant and my baby has lumber spina bifida would love to chat as i want to keep him i have an mri scan on wednesday to find out how bad it is and get my results on friday im not giving up on him at all i dont have msn but i do facebook angefahey@live.co.uk would love to chat to anyone going through the same and things have been ok please thanks angela ↑ |
| Name: opal | Date: Aug 23rd, 2009 1:22 AM |
| hello angefahey how are you going how was the scan ↑ |
| Name: martina | Date: Aug 23rd, 2009 6:34 PM |
| hi my name is martina &am new to the chat room. i have a little girl with spina bifida called kerry louise & she is 4years old. i found out at my 20week scan. at the time i was anxious but delighted i was getting my girl! kerry has been through a lot but has been great.she is a lovable little girl & my pride & joy. any parents that want a chat im at martinashortt@MSN.com ↑ |
| Name: martina | Date: Aug 23rd, 2009 7:00 PM |
| Name: nancy | Date: Aug 27th, 2009 5:39 AM |
| hello im nancy and im a girl who is 10 years of age and im single ↑ |
| Name: Brianne | Date: Sep 5th, 2009 11:12 PM |
| I agree. I am starting high shool next week and when i went to the open house people kept asking what i had, and when i said spina bifida, most of them said something like, " oh thats too bad. i feel sorry for you" It makes me upset that they pity me. ↑ |
| Name: lili | Date: Sep 13th, 2009 11:52 PM |
| hi, i have a 5 year old beautifull girl with sb. she just started kinder and the first week was hard an all of us especially because all the questions and the feeling sorry for us. if anyone there who went through the same? ↑ |
| Name: lili | Date: Sep 14th, 2009 12:31 AM |
| i see brianne is going through the same thing. Well i guess it`s up to us to make people aware that everyone is different and no perffect ↑ |
| Name: Stephanie | Date: Sep 14th, 2009 1:22 AM |
| i have S/B and have a w/chair i'm 13 yrs old i would like to chat with kids my age so i could see what we have in common and talk and meet new friends.Im from chicago il any one out there from chicago?email me so we can chat chitownstef@hotmail.com or stephaniegirl13@myspace.com ill like to hear from more kids like me. ↑ |
| Name: jenna | Date: Sep 15th, 2009 3:06 PM |
| i was wondering if any of you knew if closed neural tube defects show up on AFP tests or quad screens. I just had these tests done and am waiting for the results. I am 16 weeks pregnant. Everything i look up says open neural tube defects, but i was just wondering about the closed also. Any info you have would be appreciated. thanks ↑ |
| Name: Catherine | Date: Sep 19th, 2009 6:29 AM |
Lately i'v just been straight with people who ask me why im on crutches. i just say, i have spina bifida, and they have either been shocked or embarressed! or they say, are you coping? This one girl who asked, i told her, and she was so embarressed she just walked off!!
thought it was a little odd! lol ↑ |
| Name: opal | Date: Sep 29th, 2009 12:05 AM |
| hi everyone anyone like to chat ↑ |
| Name: Reann | Date: Oct 9th, 2009 6:36 AM |
| PONSETI. Hi as anyone older had ponseti on clubfeet ( talipies)that as spina bifida ,my daughter is almost 3 and as just started ponseti on only one foot because person who's doin it doesn't think it will work on her , please email me Reannlouisejenkins@yahoo.com , also anyone who would like to chat please email ↑ |
| Name: Tyiece | Date: Oct 20th, 2009 9:00 AM |
| Hello is anyone have difficulties learing math with Spina Bifida ↑ |
| Name: Catherine | Date: Oct 27th, 2009 2:11 PM |
| I'm not good at maths lol ↑ |
| Name: sharlene | Date: Nov 1st, 2009 3:08 PM |
| did anyone here if anyone else had two kids with spina bifida? ↑ |
| Name: trinette | Date: Nov 2nd, 2009 8:15 PM |
Hi, my name is Trinette and i have a 5 year old son w/ spinal bifida and was just looking to see if anyone wanted to chat? i have
some experiences with the issue but also have question myself. ↑ |
| Name: trinette | Date: Nov 2nd, 2009 8:22 PM |
| i had forgotten to add my email it's bessiejvic@aol.com ↑ |
| Name: bryce | Date: Nov 16th, 2009 3:42 AM |
| Hi, my names Bryce, im 19 years old with myelomeningocele, I was one of the first to obtain the cecostomy tube, i also have an artificial sphincter. i can walk without the help of any devices and i would love to attempt to answer any questions you may have. bgiroux7@hotmail.com ↑ |
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