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/

Curse Educators Mutual Insurance

Went to the hospital this morning to check in for surgery. Bottom line, we were sent home after hours of battling with the insurance company. Our insurance has denied our claims and all of our efforts thus far. We are not alone though. All day we've been surrounded by amazing doctors and staff. They spent the majority of their day right next to us battling it out with insurance. We are exhausting all our resources, and I'm hopeful that things will still work out. We also have an attorney who wrote a letter and called the insurance on our behalf. The hospital will not do the surgery without medical coverage. Bottom line, the expenses could be more than we could imagine or ever hope to pay off if there are complications. And remember, only 20% do NOT have complications. I just don't believe that we've come this far only to walk away. We are spent and deflated. How much longer can this go on until we fly back to Utah and fight this battle from home? Our absol...

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...

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...

Get used to the Stairs

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