Hello, My name is Kelley I am the grandmother of baby Jaedyn. She was born in Feb of 2008(this year), with a very large myelomeningcele, her legs were...
Cathing does take a lot out of you but I have been told by more than one urologists that you have to cath a child no less than once every 6 hours or it really...
Hey Grandmu! I actually don't know anything about the wholistic medicines, but I do know another Yahoo group that talks a lot about it... it's SPD-TIPS in...
Grandma Kelley, I'd tend to agree with the hospital about cathing babies, and also Stormie's brilliant explanation. I'm an adult with Spina Bifida, aged 49,...
Hi! First of all, rest assured, your grandaughter is in good hands at Cincinnati Children's.? My best friend, who also has SB, had her care there while she...
Amber's hips were out also they started out triple diapering her then a brace and finally gave up saying it would be more panful 2 do surgery so they opted 2...
hi grandmu kelly My daughter is 3 and she has spina bifida, hydrocephalic, and chiari malformation. and many other medicle issues. but we live 1 1/2 hour...
Hi, I am a young mother myself with a child that has spina bifida. When I was carrying her it hadnt been detected until she was born, as you can imagine it has...
Hi Donna, I'm not sure if I sent the last message to just Tena or the whole group. It went into a little detail about where Jaedyn's mom is about going into a...
Oohhhh! I just understood the triple diapering, was it a step toward lining up ball and socket joint? Or am I still going to have to ponder this some more? Be...
Hello, Im jaedyns mom, my name is celeste and im 18. my mother told me that you had e-mailed her and said that i could contact you if i was interested. I would...
Hello. I wrote in awhile ago and want to say thank you for all of your support. Here I am again. The situation is that my son, 9 months old, had corrective...
Brent, I am sorry your son is having such trouble.I would say the pooping 30 times a day may be due to severe constipation. It sounds strange saying...
hi, no i didnt get the message. At the moment she doesnt use pacifiers (well only her thumb). She hasnt had her back surgery yet, still waiting for a date, its...
Hi im glad you have replied. I understand what you say about your friends. They show compasion but they dont really understand how im feeling or what i am...
My daughter had a rod surgery August 07. We had a time getting her dry after surgery. After a year she is finally getting there. The pooping sounds like...
My name is Deana and I am 21 weeks 5 days prego. I was told last week that my baby has spina bifida myelomeningocele. Forsure the opening is at S1 down and...
I can understand being scared. My husband has spina bifida and in addition to that we are in the process of adopting a toddler from Korea who also has spina...
Hi Deana! My name is Rachelle and my son is 5 now. The doc's gave us the doom speach as well. He has to be cathed 3x a day and takes benefiber everyday...
... Hi Brent ~ My son, Joshua, has lipomyelomeningocele, as well. He is cathed 4x/day because he doesn't pee much on his own and he has very little anal tone,...
Deana, I just want to let you know that no child with spina bifida is the same. My son's opening was at L1 and he had function of this legs and control over...
Deana, my husband and I adopted a beautiful 3.5 year old girl from China who was born with the same condition. Her back was closed when she was about 6months...
Dear Deana, my name is Kelley. I'm the grandmother of Jaedyn, and My daughter found out at the same point of her pregnancy as you have. Jaedyn's mom and dad...
Thanks to you and Christy, we went forward and had an x ray done today. Guess what? He is constipated. We are treating it but more importantly what does this...
Hi, Deana, I understand about being scared. My daughter is 9 months old with spina bifida. I can still remember vividly those first few weeks after we were...
Hi Brent and Shannon, I know I haven't posted much, but just wanted to add my two cents about this. Keep up the hope, no two people with SB are exactly the...
Hi Deana, My son in now 2 and has his lesion at the L3 level. He is extremely happy & content. We have bowel & bladder issues, a shunt for the hydro and PT...
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