Mom Seeking Other Moms with Child and Spina-Bifada.

Being a realist myself, I know that what ever you happen to be currently experiencing in your life can be looked at (by choice) as either you are along for the ride, or you have an opportunity to see this situation from a new and different perspective. It is not easy at first to see things in a different light. Your reality changes and evolves though based on your feelings. So choosing better feelings is critical to changing your outer world (which happens from the inside out) As Dr. Wayne Dyer says, "believe it then you will see it"

I would love to meet with you some time as I am in Sacramento near the corner of Watt and El Camino. Give me a call and we'll just chat.
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Love, L.

Hi,
Are you already hooked up with Alta California Regional Center? Your child would probably qualify for their Early Intervention program (for children birth -age 3), and receive a variety of support services at least until age 3. You can also contact the Warmline, which is a family resource center, who can look in their database for other parents of children with Spina Bifida and connect you guys.

Blessings to you as well.

Im also looking for other mom's with children who have Spina-Bifada. My daughter is 9 months old I would love to have other mom's to talk to and have other children for my daughter to play with, it would be a dream come true for me. thank you for posting it helped me not feel so alone.

My child doesn't not have spina bifida but I do know of where you can get support Warmline Family Resource Center. They have an office in Sacramento, they have been so supportive to me and my son's disabilities. I do know of another family with a child with spina bifida occulta I don't know if it is the same as you. I also have an online support group for families in the greater Sac area you are welcome to join. The families are very helpful and very supportive.
Email me and I will give you the info.

J.

Wow! I have been wondering how to get in touch with other moms also, for support, and for someone who really, truely understands what we are going thru. My daughter is 18 months old. I live in Elk Grove, and am involved with Warmline, as well as the Infant Developement Program and Alta Regional Center. My daughter gets lots of help. We dont currently use Shriners, but we go thru Kaiser Oakland. They have a wonderful Spina Bifida Clinic there, and her doctors are just great. Anyway, feel free to email me, ____@____.com and we will go from there. ;o)
~ J.

Hi there,

I forwarded this message and the responses to my dearest friend whose middle son was born with spina bifida. He is now 7, doing great, is in regular classes (with some help), wears pull ups but rarely has accidents, has near-normal walking/climbing ability, still has some sensory issues (but works on them with an OT.) Therapy, therapy, and more therapy, loads of support from OTs, counselors and family/friends seems to have made a huge difference. She was told her child would never walk, never have sex, never function normally, and would probably not live very long or healhfully. From what I remember, he had two large lesions and was born early/traumatically, with meconium in the AF. Really tragic, but he survived, just like your child!

She has 2 other kids too, so hopefully she will be able to PM you with some good advice, or post here. She's definitely got my vote for Amazing Momma. In fact, no one feels sorry for her at all, because no one realizes her son has any issues! I think that might be the hardest part for her, since he's rarely given slack by adults or other kids and she also doesn't want to give him any excuses for not pushing himself.

Anyway, I just wanted you to know that there are other mommas sending you gentle, healing thoughts and hoping you (and all the other affected moms) have as much success as my friend. Hopefully she'll pop on to share some of her advice, since she's apparently outsmarted the neurology department at Shriner's who said her child would never walk (they were also the ones who told her her son was too fat and she had to be careful with SB babies, because they have a tendency to gain weight due to inactivity---but he was crawling a lot and he was getting all of his calories from breastmilk because at age 2, he still wasn't able to "eat/swallow" etc. and she was feeding him on demand/watching him throw up half of what he'd sucked down every meal.)

Now he plays soccer.

Go figure.