Spina Bifida Links

Utah has a great support group for spina bifida families. The first activity we went to was when I was pregnant with Davey. I wanted to see how kids with spina bifida look and acted. The families there were so kind as they shared their support and experience with us. It's always nice to visit with other moms who "get it".
http://utahspinabifida.org/

I had fetal surgery on Maggie's back when she was 25 weeks in utero. Children's Memorial Hermann Hospital in Houston performed the surgery. We were so blessed by this wonderful team. They will forever be our miracle workers. This link has a video detailing spina bifida and the fetal surgery. It was a great resource for us as we tried to decide whether or not to do the surgery...not an easy choice.
http://childrens.memorialhermann.org/texas-fetal-center/spina-bifida-myelomeningocele/

Facebook has a few groups for moms who have had the fetal surgery. For women who choose the fetal surgery, it can often be a lonely road. These groups connect you to other families who have been there, done that.
https://www.facebook.com/groups/SpinaBifidaFetalSurgery/
https://www.facebook.com/groups/119828200230/

Kids on the Move is fantastic! Davey started receiving services when he was just two weeks old. Now Maggie does too. These therapists and workers become an integral part of our kids reaching their potential.
http://www.kotm.org/

At The Moment

Josie was reluctant to go to school today. Friday was her "worstest day ever" of kindergarten. According to her account, nobody would play with her at recess. "I would ask different girls but they said they wanted to play with somebody else." Then on the bus ride home, a girl kept pulling her pigtails, sang a mean song making fun of her and yanked her backpack. I asked Josie how she reacted. Her response, "I just sat in the corner." When Matt heard the story he said, "Nobody puts Josie in a corner." Just like Patrick Swayze. I think it's easier to say goodbye to a daughter being wheeled into an operating room than watch her venture into the great unknown of kindergarten. Speaking of surgery, we are still in limbo for Maggie's surgery... ETV-CVF . We are scheduled for this Thursday, but I'll meet with the neurosurgeon on Wednesday and reevaluate whether or not we should proceed. We don't know what to do...

She's Here!

The c-section went beautifully, Maggie was delivered at 10:17. She's 6 lbs 13 oz and has a smattering of Davey's hair, my chin, Millie's voice, Kate's ears, and Josie's temperament. Her lungs seem pretty immature so she's in the Newborn ICU for now. Millie is back in her pre-op room and has not yet been able to really see Maggie. Immediately after delivering her the doctors whisked Maggie into the NICU in the adjoining room. I've been able to see her in there and have shown Millie the pictures. The lesion on her back looks good--it looks like a patch of skin covering what used to be the hole that was there. Her feet don't have any noticeable clubbing and she definitely has more sensation there than Davey did. We are so grateful that she is here. Posted with Blogsy

Flippidy Floo Flah Folic

Last time I was at Shriners, one of the doctors asked if I had checked my folic acid levels after having Davey. I responded that I'd never heard of anything like that and had not checked them. The doctor then proceeded to say she had spoken with a geneticist about our family...two kids with spina bifida. The geneticist said that I most likely don't metabolize folic acid properly, so that's why my last two children have spina bifida. In summary, they thought that if I had checked my folic acid levels after Davey, I would have seen that something was wrong and could have prevented Maggie from having spina bifida. As I listened to these burning words, I thought, "Do you know what you're saying?" I turned away, bounced with Maggie, and wiped my tears. I'm often asked about folic acid. It's an integral part of spina bifida prevention , and I should lecture about how everyone should take their folic pills. But I'm not in t...

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